Mariana Broussard 

Associate Director, Global Patient Advocacy, Multiple Myeloma 

Dr. Brian Englehart, MD, MSCI 

Multiple Myeloma Medical Engagement Lead  

Robert Pugh 

Long-Term Multiple Myeloma Survivor Patient Advocate 

Robert Pugh was preparing for an upcoming sporting event when he was diagnosed with multiple myeloma. The life-changing news arrived out of nowhere for the active man who considered himself the picture of health. “ I do not and did not ever have a history of illnesses of any kind,” he told the audience at the Black Health Matters Fall 2025 Health Summit & Expo in Charlotte, North Carolina.  

Pugh shared what it was like learning that he was facing multiple myeloma. “I was preparing for a race, a 15K, and I went in simply for an examination,” said Pugh. He wanted to get a jump on the minor pain he was feeling. It didn’t strike him as cause for serious concern. “As a runner, you’re accustomed to pain.” His doctor examined his back pain and raised an alarm. “He recognized that my white blood cells had decreased. They were not below the average number, but for me, they were below what he was accustomed to,” said Pugh. The physician recommended additional tests and ultimately gave him a referral.  

“I need you to go see this guy,” the doctor told him. Pugh was shocked to learn the guy was an oncologist.  

How Common Is Multiple Myeloma In Black Households? 

Pugh’s experience was not uncommon in the Black community. The International Myeloma Foundation reports that “In the U.S., African Americans are about 14% of the country’s population, but they constitute about 20% of all myeloma patients.”  

“Multiple myeloma is the second most common blood cancer in the United States,” said Mariana Broussard, Associate Director, Global Patient Advocacy, Multiple Myeloma at Bristol Myers Squibb.  It progresses over three stages. Treatments are advancing. There have been innovations in regimens including stem cell transplants but there is no cure. She described the way that the condition disproportionately impacts the Black community.  

“African-American patients are twice as likely to be diagnosed with multiple myeloma compared to white patients. We also often experience worse outcomes due to delays in diagnosis and treatment. Mortality is also about twice as high in the African-American community,” she continued.  

How Does Multiple Myeloma Show Up Differently?  

Unlike the dramatic moments people watch on television where a character finds an oversized lump they can’t ignore, this was not as clear-cut of a process. “’It’s disseminated. It is spread throughout your blood and bone marrow, which is unlike solid tumors, which you know generally begin as a lump or a bump in a solid organ,” explained Dr. Brian Englehart.  

Multiple myeloma is a common form of cancer, but Pugh had zero information about the condition when he received his diagnosis. “I had no idea what that was,” he said. “It just kind of threw me.”  

Pugh sprinted towards denial. He refused to believe what he was told initially. “When I was diagnosed, I thought they had the wrong person,” he said.  

According to a 2022 study in the American Journal of Hematology, “Multiple myeloma accounts for 1% of all cancers and approximately 10% of all hematologic malignancies,” and “each year over 32,000 new cases are diagnosed in the United States, and almost 13,000 patients die of the disease.”  

Diagnosing Multiple Myeloma Can Be Difficult 

Englehart noted that Pugh’s experience of a simple annoyance symbolizing something more serious was not uncommon. “His course was kind of very typical for many patients with multiple myeloma,” he said. “Patients can often present with pain, and it’s in the back, it can be in the hip or ribs.”  

A person’s lifestyle, like Pugh being a runner, or their stage of life can impact how these symptoms are masked. “The other thing is we all, especially as we get older, we all experience pain,” said Englehart. He taught the room the differences in pain that might accompany a serious illness, and not just a stressful day.  

“There are some symptoms that are more worrisome than others, like pain that wakes you up at night or pain that doesn’t go away after a week or two of rest or pain that you can’t attribute to some strenuous activity or something that you’ve done in the preceding couple of days,” he continued. There are other symptoms that can be overlooked as well. “Patients can also have fatigue from anemia. Recurrent infections are also fairly common too, so multiple myeloma is a very tricky disease.”  

Myeloma Can Exist Without Symptoms  

He explained that firming up a diagnosis can be difficult due to the protocol. “There is no one test generally used for diagnosis,” Englehart added. “It’s really a series of tests.”  

“Some patients with myeloma are asymptomatic. They have no symptoms whatsoever and are diagnosed incidentally,” said Englehart. “You go for a routine checkup, and your doctor finds out that you’re more anemic or your kidneys aren’t functioning normally. Sometimes that can lead to a diagnosis.”  

Routine screenings can help patients learn their status and begin treatment sooner. Accessing these can be difficult for those without the necessary resources. “Economic and social characteristics can play a large role in the diagnosis, treatment, and management of multiple myeloma,” said Englehart. “If healthcare access is limited, symptoms may go undiagnosed or untreated.”  

Treating Multiple Myeloma Requires Collaboration  

The trickiness of multiple myeloma is best fought as a unit. Patients have to advocate for themselves and coordinate with different health care providers to improve their outcomes.  

“It really takes a team and a village to help treat and care for patients with multiple myeloma,” said Englehart. “Patients who are diagnosed with multiple myeloma, it’s also important to know that their usual treatment course is dictated by a multidisciplinary team. Meaning it’s groups of different doctors, nurses, clinicians involved in their care. That can be hematologists, oncologists, it can be radiation doctors, radiologists, pathologists, supportive care.  

Multiple Myeloma Can Impact One’s Mental Health  

It can be helpful for one’s healthcare team to include a mental health professional as well. A 2025 article in the Journal of Clinical Lymphoma Myeloma and Leukemia identifies mental health considerations as a gap in the treatment protocols for multiple myeloma patients. It found that “People with myeloma often report high levels of anxiety and depression and are reported to have the lowest quality of life of any cancer type likely due to the incurable nature of the disease.” Pugh confirmed the mental health challenges. “I was the mover and the shaker. I wasn’t moving or shaking. So, I found myself avoiding people, you know? Because you’re just not who you thought you were.”  

His trust and relationships with his providers helped him work through those challenges. They helped him establish a routine for a maintenance phase to keep his health in mind during his day-to-day life. It would look different, but he could make it look the best possible with proper intervention.  

“Myeloma is not something that that comes you take care of it, and it’s over,” he acknowledged  

Pugh advised those recently diagnosed to take the advice they are given to heart to pursue the best health they can and define their own maintenance phase routine.  

“You have to take ownership for what you’re being told,” said Pugh.  

The post Patient Power Insights from the Front Lines of Myeloma appeared first on Black Health Matters.

•  Red blood cells, which carry oxygen throughout your body
• White blood cells, which fight infection
• Platelets, which control bleeding, are regularly generated in a healthy body to replace old, dying ones. The excessive production of white blood cells in the bone marrow leads to blood cancers.

There Are Different Types of Blood Cancer

Leukemia, lymphoma, and Myeloma are some of the most common types of blood cancer.

Leukemia

• Leukemia is the most common blood cancer in the U.S. and the most common form of childhood cancer. There are many types of leukemia, but in general, it occurs in the bone marrow when abnormal white blood cells are produced at an abnormally high rate. This interferes with the bone marrow’s ability to produce red blood cells and platelets.

Subcategories of leukemia:

• Acute erythroid leukemia, Acute lymphoblastic leukemia (ALL), Acute megakaryoblastic leukemia, Acute myeloid leukemia (AML), Acute promyelocytic leukemia (APL), Chronic lymphocytic leukemia (CLL), Chronic myeloid leukemia (CML), Chronic myelomonocytic leukemia (CMML), Childhood leukemia, Hairy cell leukemia (HCL), Large granular lymphocytic leukemia (LGLL), Mast cell leukaemia (MCL).

Lymphoma

•  Lymphoma is a type of cancer that affects the lymphatic system, which plays a crucial role in the body’s immune response to infection. Lymphoma cells can form tumors in areas such as your lymph nodes. There are two primary forms: Hodgkin and non-Hodgkin lymphoma.

Subcategories of lymphoma

• Burkitt lymphoma, Diffuse large B-cell lymphoma (DLBCL), Double-hit lymphoma Follicular lymphoma, Grey zone lymphoma, High-grade B-cell lymphoma not otherwise specified (NOS), Hodgkin lymphoma, MALT lymphoma, Mantle cell lymphoma, Nodal marginal zone lymphoma, Nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL), Non-Hodgkin lymphoma, Peripheral T cell lymphoma (PTCL), Primary central nervous system lymphoma (PCNSL), Skin lymphoma (cutaneous lymphoma), Small lymphocytic lymphoma (SLL), Splenic marginal zone lymphoma, Triple-hit lymphoma, Waldenström macroglobulinemia (WM).

Myeloma

• Myeloma originates in the bone marrow and affects white blood cells called plasma cells, a type of white blood cell that plays a crucial role in the immune system by producing antibodies to combat germs. Multiple Myeloma is the most common subtype of plasma cell neoplasms. Symptoms usually don’t appear until the cancer is widespread and advanced. Rarer forms of blood cancer include:
  • Myeloproliferative neoplasms (MPN). In this type of cancer, the bone marrow produces an excessive number of white blood cells, red blood cells, or platelets.
  • Myelodysplastic syndromes (MDS). With MDS, your bone marrow makes abnormal blood cells. Sometimes, blood cells are abnormal because they fail to develop fully. Immature cells are called blasts.

• Non-cancerous blood conditions: MGUS

Risk Factors

For Blood Cancer

• Certain factors may play a role in increasing your blood cancer risk, including:
• Age. Your risk of developing a condition increases as you age.
•  Sex. Blood cancers are more common in males.
• Smoking. A smoking history or exposure to secondhand smoke may increase your risk.
• Exposure to toxic chemicals. Long-term exposure to benzene and formaldehyde can increase your risk of specific health issues. You’re more likely to encounter them if you work in an industry like manufacturing.
• Previous cancer treatment. Previous chemotherapy or radiation therapy may increase your risk of developing blood cancer.
• Biological family history. Some types of blood cancers may run in families. But most people who receive a diagnosis don’t have a family member with blood cancer.
•  Several autoimmune diseases, genetic disorders, and conditions that cause long-term inflammation are associated with increased blood cancer risk. Blood cancers aren’t avoidable.

But even someone with a clean bill of health can develop blood cancer. However, you can lower your risk by avoiding certain risk factors, such as smoking.

Additional Risk Factors for Leukemia, Lymphoma, and Myeloma

Leukemia: Advancing age, being male, family history of blood cancer, smoking, genetic disorders like Down syndrome, Chronic exposure to high doses of radiation or industrial chemicals, and a History of chemotherapy or radiation cancer treatment.

Lymphoma: advancing age, although people between the ages of 15 and 35 are at risk for Hodgkin lymphoma; being male; a family history of blood cancer; and a History of infection and disease. For example, the Epstein-Barr virus, which causes mono, can increase the risk for Hodgkin and autoimmune disorders, such as rheumatoid arthritis, a weakened immune system, Chronic exposure to certain industrial chemicals, and radiation.

Myeloma: Advancing age, being male, being African American, Family history of blood cancer or other plasma cell diseases, such as monoclonal gammopathy of undetermined significance (MGUS) or solitary plasmacytoma, being overweight or obese, and Chronic exposure to radiation and chemicals.

Symptoms

People with blood cancer may experience a range of symptoms, including:

• Fatigue
• Shortness of breath
• Swollen lymph nodes
• Frequent infections

Other symptoms include: Bone pain, Drenching night sweats, Enlarged liver or spleen, Joint pain, Persistent fever, Unexplained weight loss, Unusual bruising or bleeding (warning signs include tiny red skin spots or purplish skin patches), rash, or itchy skin that is unexplained. Learn more about the symptoms of blood cancer.

Bruises: On lighter skin, bruises start red and gradually darken. However, on darker skin, bruises may be hard to see at first but become darker than the surrounding skin over time.

Rashes: They often appear as clusters of tiny spots or larger blotches. On lighter skin, rashes look red or purple. On Black and brown skin, they appear as dark purple or darker spots. These spots don’t fade when pressed.

Paleness (A Loss of Pallor): Easier to spot in light skin as unusual paleness. In individuals with Black or brown skin, pallor may appear grayish or manifest as paler palms, lips, gums, tongue, or nail beds. For all skin types, pale inner eyelids can also be a sign.

How is Blood Cancer Diagnosed?

• Leukemia: Your doctor will order a complete blood count (CBC) test, which can help identify abnormal levels of white blood cells in relation to red blood cells and platelets.
• Lymphoma: Your doctor will need to perform a biopsy, which involves removing a small portion of tissue for examination under a microscope. In some cases, your doctor may also order an X-ray, CT, or PET scan to detect swollen lymph nodes.
• Myeloma: Your doctor will order a CBC, as well as other blood or urine tests, to detect chemicals or proteins produced as a result of myeloma development. In some cases, bone marrow biopsy, X-ray, MRI, PET, and CT scans can be used to confirm the presence and extent of the spread.

How is Blood Cancer Treated?

Common treatments for blood cancer include:

• Chemotherapy. Chemotherapy is a primary treatment for blood cancer. It kills cancer cells to either slow down the disease’s progress or eliminate the cancer. Healthcare providers use various types of chemotherapy drugs to treat different blood cancers.
•  Radiation therapy. This treatment uses radiation to damage the DNA in abnormal cells, preventing them from replicating. Providers may use radiation to ease symptoms (palliative care). They often combine radiation therapy with other forms of treatment.
•  Immunotherapy. This treatment improves your immune system’s ability to fight cancer. Some of the most commonly used immunotherapies for blood cancer are monoclonal antibodies and CAR T-cell therapy.
• Targeted therapy. These treatments target weaknesses in cancer cells related to abnormal genetic mutations.
• Autologous stem cell transplant. Providers can collect bone marrow stem cells from your body before giving you high doses of chemotherapy. Once chemotherapy kills the cancer cells, they’ll give your healthy stem cells back to you. They’ll develop into healthy blood cells.
• Allogeneic stem cell transplant. Sometimes, damaged bone marrow needs to be replaced with healthy bone marrow. Providers identify a suitable bone marrow donor and use the donor’s cells to replace your damaged ones.
•  Stem cell transplantation: Healthy stem cells can be infused into your body to help resume healthy blood production following therapy to destroy malignant blood cells.

Resources

Blood Cancer United.org

Yale Medicine: Blood Cancers

Summa Health: Leukemia Risk Factors

Blood Cancer UK symptoms and signs

International Myeloma Foundation

Race and Ethnicity Risk Factors for Leukemia

Cleveland Clinic

The post Understanding Blood Cancers appeared first on Black Health Matters.

The temporary policies that allowed broad telehealth access and coverage across state lines were set to expire in 2024, with an extension of some services through March of this year. The purpose of this paper is to advocate for the expanded use of telehealth beyond 2025 in the management of blood cancer. Advocates warn that this critical resource may soon disappear unless action is taken.

Why This Matters

“Telehealth wasn’t just about convenience. It lifted real burdens for people who couldn’t easily get to a doctor’s office,” said study co-author Deanna Darlington, a health equity expert and advocate. “It became a lifeline. Taking it away now would only further restrict access to care.” Blood cancers like leukemia, lymphoma, and myeloma disproportionately affect Black communities. Black Americans are twice as likely to develop and experience poorer outcomes from multiple myeloma specifically. Telemedicine removes two big barriers: travel distance and time out of work or caregiving.

The benefits of telehealth are clear, but the stakes are high for Black Americans. Multiple myeloma, a cancer of plasma cells, disproportionately affects individuals of African ancestry, who face a significantly higher risk of developing the disease compared to those of European descent.

“This increased risk is thought to be influenced by a combination of genetic and environmental factors,” explained co-author Mimi Choon Quinones. “Research suggests that genetic differences, particularly in white blood cell traits, and the prevalence of conditions like MGUS, may play a role. Obesity and chronic infections, which are more common in some African populations, may also contribute to the higher incidence and mortality rates.”

While the science is still evolving, Choon-Quinones emphasized that telemedicine offers a critical path forward, not just for treatment, but also for early detection. “We see telehealth as a tool to help identify who may be at risk, even before a diagnosis, and especially for those who don’t live near a specialist,” she said.

How Telehealth Works

The study team conducted a combination of scientific review and direct engagement with blood cancer advocates, reflecting real-world experiences.

They found that telemedicine:

• Helped patients stick to their treatment plans
• Improved quality of life and emotional well-being
• Reduced time and financial burdens from traveling long distances
• Allowed earlier access to expert consultations, which sometimes occurred across state lines
• Was well accepted by clinicians, especially for follow-up visits and care management

Darlington points out that many of the patients most impacted by blood cancers, especially Black patients, are also the most likely to face access barriers. “You might live in Kansas, and the expert is in New York. Before COVID, state laws prevented you from doing a virtual consultation across state lines, but during the pandemic, those barriers came down. People were finally able to talk to the experts they needed,” she said. “Think about how many people don’t have access to specialists. This gave everyday people that access.”

Times Are Changing

“Right now, there’s no permanent provision to keep telehealth reimbursed,” said Darlington. “If we lose this, we lose the progress we’ve made. This is especially damaging to communities that are already underserved.”

Choon-Quinones agrees and emphasizes that this issue should be a community-wide call to action. “The focus needs to be on how we, as a community, can leverage the regulations that still exist. If they expire, we need to rally, go to Capitol Hill, and raise a strong voice,” she said. “We’ve already engaged with the chairman of the health committee once to extend coverage and succeeded. But I don’t know that we’ll be able to count on this administration to do it again.”

The Passion Behind the Paper

Choon-Quinones joined this project while working on her systematic review of blood cancers, as other co-authors had already spent much time collaborating prior. But she quickly realized that science alone wasn’t enough. By collaborating with advocates, she created a combined evidence base that is both scientifically informed and community-driven.

“I’m passionate about this because it could make an enormous difference to the families and communities that blood cancers like multiple myeloma impact,” she said. “This is a real chance to reduce disparities.”

Darlington echoes that sentiment and urges people to think about the daily realities patients face. “When people are working full-time, caring for family, and managing other chronic conditions, the ability to have a telehealth visit can mean the difference between getting care and going without,” she said. “This is especially true in communities of color, where people are often further away from specialized care, less aware of available resources, and facing more barriers to better health.”

What’s Next?

Telehealth expansion was born out of a nationwide pandemic. It has opened doors that have long been shut for many people.

Telemedicine shouldn’t just be a pandemic-era convenience. It’s a chance to redefine equity in blood cancer care. Initial evidence suggests promise in improving outcomes, reducing costs, and overcoming longstanding racial disparities. For Black Americans, who face higher disease rates and access challenges, virtual care opens a path toward more timely and patient-centered care.

Telemedicine is more than a temporary fix. It’s a vital tool for closing healthcare gaps. For Black Americans living with blood cancers, it can mean earlier diagnoses, easier access to experts, and fewer financial and logistical hurdles. The question now is not whether telehealth works, but what we can do to protect our access to it.

References

 Mikhael, J., Darlington, D., Howell, B., Hydren, J., Hernandez, T., Werner, S., … Choon-Quinones, M. (2025). The benefits of telehealth in promoting equity in blood cancer care – results of a multi-stakeholder forum and systematic literature review. Journal of Medical Economics, 28(1), 788–802.

American Cancer Society. What Is Multiple Myeloma?

The post How Telehealth Can Help Us Fight Blood Cancer appeared first on Black Health Matters.

BHM: What motivated you to start Chronic Fitness and focus on helping individuals with chronic conditions?

Yolanda Sarrabo:  I am also part of the community I serve. I was diagnosed with multiple myeloma many moons ago. During treatment and everything that came with it, I wanted to continue exercising.

After interviewing a few personal trainers, I realized it just wasn’t a good fit. Even though there are trainers who target specific communities, I felt my needs weren’t being met. So, I thought about it, prayed on it, and realized there was a niche for special populations. From there, I decided to start my own initiative, Chronic Fitness was born to fill the gap for people like me.

BHM: How does fitness help individuals living with chronic conditions improve their physical and mental health?

Yolanda Sarrabo: Fitness, along with proper nutrition, is essential for making lifestyle changes. Treatment, including medications, can alter one’s daily life, and people often forget about the nutritional and physical aspects.

Nowadays, you might hear doctors recommending exercise alongside treatment. For something like hypertension, a good doctor will include exercise in the plan, not just medication. Years ago, it was all about the meds, but now it’s more holistic, with physical, mental, and nutritional health all working together.

BHM: What are the biggest challenges people face when starting or maintaining a wellness routine?

Yolanda Sarrabo: One major barrier is financial concern. People often ask, “Can I afford this?” You might think, “I can’t afford a trainer, so I won’t exercise,” but you don’t need a trainer to stay active. You can walk, follow exercise videos on YouTube, or try activities like Zumba or cardio. There are countless ways to move your body that don’t require spending a lot of money.

BHM: You’ve spoken about advocating for one’s health. Can you elaborate on what patients should do to take control, particularly in the Black community?

Yolanda Sarrabo: I really push this concept of participatory medicine. It’s about having transparent conversations with your doctor. If you’re diagnosed with something, whether it’s cancer, hypertension, or diabetes, don’t stop at the diagnosis.

At your next visit, ask questions such as, “What does this mean? How does it change my daily life? Should I adjust my diet or exercise routine?”

This is a partnership; you’re not just a passive patient. You’re an active participant. If your doctor isn’t answering your questions, that’s your sign to seek a second opinion.
In the Black community, trust in the healthcare system can be tricky, especially for older generations who’ve faced bad experiences. But you need to have open conversations with your healthcare provider and collaborate on your survivorship.

BHM: How can people set realistic fitness goals and maintain discipline when they’re feeling overwhelmed or impatient with results?

Yolanda Sarrabo: Write it down; seeing your goals on paper makes a huge difference. Keep a food diary and track your body measurements. This helps you understand where changes need to be made and whether your habits align with your goals. Start small, like losing 2 to 5 pounds instead of aiming for 30 in two months. Gradual progress builds consistency, and as you grow stronger, you’ll naturally push for more challenges.

BHM: If you had one piece of advice for someone feeling overwhelmed by their health challenges, what would it be?

Yolanda Sarrabo: Embrace your new normalcy. Things are different now, whether good or bad, and you need to embrace where you are while staying open to change. Many people feel they’re not healthy because of their condition, and that mindset can block progress. But there’s room to make changes.

Life doesn’t stop with a diagnosis; there’s always room for improvement. Even I had hypertension. I did what I needed to do, took the meds, and all of that. Then, my numbers went down. I was able to get off the meds.

I think a lot of people just get stuck on how life stops. Based on what they are being told, they start to think there’s no wiggle room to make improvements, but there is. Embrace it all. This is your new normalcy, and within your new normalcy, there’s room to change.

Kickstart Your 30-Day Fitness Routine.

Yolanda recommends a simple, effective fitness plan to help you build consistency. These low-impact routines are great for all fitness levels:

Low-Impact Cardio (Monday, Wednesday, Friday):

Option 1: Modified jumping jacks, windmills, bicep jabs (10 reps, two sets)
Option 2: Sumo squats, side-to-side twists, forward bends (10 reps, two sets)
Option 3: Squats, squat with overhead reach, wall push-ups (10 reps, two sets)

Upper Body Routine (Tuesday, Thursday):

Option 1: Wall push-ups, crossbody punches, wood chops (10 reps, two sets)
Option 2: Seated shoulder press, arm circles, bicep curls (10 reps, two sets; with or without weights)

Through her work with Chronic Fitness, Yolanda Sarrabo has identified a need for more motivation around exercise. Take inspiration from her example; you can take charge of your journey with small steps, consistency, and the right mindset. And don’t let chronic conditions get in the way.

Be sure to check with your HCP before beginning any exercise program. 

The post Motivated to Move: Exercising With a Chronic Condition appeared first on Black Health Matters.

Dr. Amany Keruakous, MD, shared vital information about multiple myeloma with the audience at the Black Health Matters 2025 Health Summit & Expo.

Multiple myeloma disproportionately impacts the Black community in major ways. According to the Journal of Blood Advances, “AAs have a higher risk of MM and the precursor condition monoclonal gammopathy of undetermined significance compared with White individuals.”

Multiple myeloma is a chronic disease but is not a hopeless one. “There are so many treatment options available,” said Keruakous. “The 10-year survival has significantly gotten better than what it was 20 years ago.”

Keruakous explained that the jarring statistics regarding adverse outcomes of Black patients with multiple myeloma could be a result of improper care and not inherently low chances of successfully fighting the condition. “If it’s treated properly, they do better,” she said. “Unfortunately, because of lack of resources for African-American patients. The survival rates for African-Americans, they have not kept pace.”

Access to care makes a significant difference in the outcome of multiple myeloma cases, according to research done by Keruakous. “Data shows that under equal opportunity treatment settings. The African-American patients, they actually do better than caucasian when they’re treated properly,” she said.

Proper treatments can not be developed and implemented without the type of information obtained from clinical trials. Trials that do not include Black patients prevent Black people from being fully involved in medical innovations.

Bristol Meyers Squibb and SparkCures have partnered on a screening tool that can help healthcare providers determine whether their patients are available to participate in studies.

Keruakous shared information about her research on fighting multiple myeloma, including a cooperative group study. “These two studies actually have a goal of enrolling African-American patients specifically,” she said. She was inspired to diversify participation by the facts surrounding the outcomes in the Black community. “The prognosis is poor if they’re not treated properly,” Keruakous added.

What Do You Need To Know About Multiple Myeloma?

Treatments for Multiple Myeloma are Advancing.

“There have been remarkable improvements in myeloma, research, and treatment, and myeloma will continue to improve,” said Keruakous.

She explained that structures are in place to keep these pricey treatments accessible to those fighting multiple myeloma. “The treatments are extremely expensive, but it is all covered by your insurance, and even if it’s not covered by your insurance, all of the drug companies, they actually have a financial assistance program,” said Keruakous. “I have never had any problems giving the care that we need to our patients, and even if the drug is expensive for the patient, we ask for financial assistance programs to help get the right treatment to the patients.”

There is No Stage Four

Popular culture frequently reinforces the idea that cancer comes in four stages, but Keruakous clarified that does not apply to every type of cancer. “Myeloma has only three stages,” she explained. “Three is the worst. But even with stage three, the treatments are very promising.”

Understanding the details of multiple myeloma’s progression can empower patients to speak confidently with their doctors.

Multiple Myeloma Can Look Like Other Things

Multiple myeloma can be deceptive, according to Keruakous. “Symptoms of myeloma mimic many other conditions,” she said. She cited kidney issues, bone lesions, and anemia as some of the symptoms that could be confused by patients unaware that they are dealing with multiple myeloma.

“60% of people present with anemia, which comes with weakness, fatigue, losing energy, and recurrent infections,” she said.

Screenings Save Lives

Keruakous advised those in the room to take action to mitigate their risk of being diagnosed with multiple myeloma suddenly by ensuring that they are being screened appropriately. The presence of a family member facing multiple myeloma can be a sign to move up one’s screening. She explained that multiple myeloma runs in families due to its pervasiveness. “There is really no conclusive evidence for myeloma being an inherited disease,” she said. “It actually runs in the family just because it’s more common in this race.”

“If you have any relative who has multiple myeloma, go ask your doctor to be screened,” she said passionately. “Just tell your doctor I need to be checked for multiple myeloma.”

Age At Diagnosis Can Impact Outcomes

Keruakous revealed that the majority of diagnoses occur in older patients.

According to the Journal of Blood Advances, “Age at onset affects prognosis for patients with MM, with younger patients generally having better outcomes compared with older patients.”

The post Rewind the Session: Multiple Myeloma in the Community appeared first on Black Health Matters.

What Are Precursor Conditions?

Precursor conditions to multiple myeloma are early, often symptom-free stages of the disease where abnormal plasma cells (crucial to your immune system) are present but haven’t yet caused significant damage. The two main types are:

Monoclonal Gammopathy of Undetermined Significance (MGUS)

This is the earliest stage, where abnormal plasma cells produce M-protein, but no symptoms exist. Most people with MGUS never develop multiple myeloma, but some do, which is why doctors monitor it closely.

Smoldering Multiple Myeloma (SMM)

This is a more advanced precursor stage with higher abnormal plasma cells and M-protein levels. People with smoldering myeloma are at a greater risk of progressing to active multiple myeloma and need regular follow-ups.

Who’s Most at Risk?

Anyone can develop MGUS or smoldering myeloma, but some groups are at higher risk than others.

One key fact: Black Americans are two to three times more likely to be diagnosed with MGUS and multiple myeloma than white Americans.

Researchers are still working to understand why, but it may be due to genetic factors, environmental influences, or disparities in healthcare access. Additionally, precursor conditions are more common as people age.

MGUS is typically found in individuals over 50; the risk increases with each passing decade.

Do Precursor Conditions Cause Symptoms?

Most people with MGUS or smoldering myeloma feel perfectly fine, which is why these conditions are often discovered by accident during routine blood tests. However, some people with smoldering myeloma may experience mild symptoms, such as fatigue or bone pain. These should be discussed with your doctor immediately.

If you have been diagnosed with MGUS but have symptoms like neuropathy or renal failure, you should also visit a myeloma specialist. They can help you make sense of your case and try to help appropriately alleviate symptoms.

How Are Precursor Conditions Diagnosed?

Doctors use a combination of tests to diagnose precursor conditions:

• Blood tests to check for M-protein and other markers
•  Urine tests to detect abnormal proteins
• Bone marrow biopsy to assess the number of abnormal plasma cells
• Imaging tests (like MRI or PET scans) to check for early bone damage

What Happens After Diagnosis?

If you’re diagnosed with MGUS or smoldering myeloma, your doctor will likely recommend regular check-ups instead of immediate treatment. The goal is to monitor your condition closely and catch any changes early. For some patients with high-risk smoldering myeloma (HRSMM)—meaning they have a greater chance of progressing to multiple myeloma—early treatment or participation in a clinical trial may be an option. Ongoing research is helping doctors determine the best ways to delay or prevent its progression.

What Can You Do?

Figure out if you’re at risk. If you have a first-degree relative—a parent, child, or sibling—who has been diagnosed with myeloma or a related blood disorder, you may be at a higher risk of developing it. Taking proactive steps can help with early detection and better outcomes. Consider enrolling in the PROMISE study, which offers free prescreening for individuals at increased risk.

Talk to your doctor about routine blood tests to monitor for early signs, stay informed about risk factors, and prioritize a healthy lifestyle to support overall well-being. Knowledge is power—being proactive could make all the difference in your health journey. If you’you’ven diagnosed with a precursor condition, there are steps you can take to stay on top of your health:

•  Follow up with your doctor regularly to track any changes in your condition.
• Maintain a healthy lifestyle, including eating a balanced diet, staying active, and managing stress.
• Learn about clinical trials, especially if you have high-risk smoldering myeloma.
•  Advocate for yourself, particularly as a Black American, as you are part of a higher-risk group. Make sure you have access to the latest information and quality care.

Visit Black Myeloma Health for more resources.

Looking Ahead

A diagnosis of MGUS or smoldering myeloma does not mean you will develop multiple myeloma. Many people live for years without any progression. However, staying informed, keeping up with regular monitoring, and working with a multiple myeloma specialist can help you confidently navigate your condition.

About HealthTree Foundation

HealthTree is a global nonprofit organization using innovation to save lives. Our cutting-edge technology unites patients and researchers to help people with blood cancer live better and longer and leads the search for a cure. Learn more at healthree.org.

Sources:

• HealthTree- How Many Different Types of Multiple Myeloma?
• Multiple myeloma: 2020 update on diagnosis, risk‐stratification and management
• Racial disparities in the prevalence of monoclonal gammopathies: a population-based study of 12,482 persons from the National Health and Nutritional Examination Survey
• Prevalence of monoclonal gammopathy of undetermined significance
• Monoclonal Gammopathy of Renal Significance | New England Journal of Medicine
• Monoclonal gammopathies of clinical significance | Hematology, ASH Education Program

The post Understanding Precursor Conditions to Multiple Myeloma appeared first on Black Health Matters.

Led by Urvi A. Shah, MD, a myeloma specialist at MSK, the NUTRIVENTION clinical trial enrolled 20 participants diagnosed with precancerous blood disorders. Notably, forty-three percent of those enrolled in the trial were Black, Hispanic, or of mixed race, reflecting the study’s commitment to diversity. Additionally, 60 % of the participants had monoclonal gammopathy of undetermined significance (MGUS), and the other 40 % had smoldering myeloma (SMM). Both conditions are known precursors to multiple myeloma. Obese individuals with an elevated body mass index (BMI) are also at significantly higher risk of progression.

Participants in the trial followed a 12-week regimen of high-fiber, plant-based meals and engaged in 24 weeks of health coaching. The results were remarkable: two participants who had been experiencing disease progression before the study showed significant improvement in their disease trajectories.

None of the participants progressed to multiple myeloma during the one-year follow-up period.

Empowering Patients with Knowledge and Nutrition

“This study showcases the power of nutrition—specifically a high-fiber, plant-based diet—and unlocks a better understanding of how it can lead to improvements in the microbiome and metabolism to build a stronger immune system,” said Dr. Shah. “These findings further support how we as physicians can empower patients, especially those with precancerous conditions, with knowledge on reducing their cancer risk through dietary changes.”

Multiple myeloma is the second most common blood cancer (leukemia is first) and typically develops from precursor conditions such as MGUS and smoldering myeloma.

Research has shown that individuals with poor diets and a low intake of plant-based foods are at greater risk of developing multiple myeloma.

Unique Challenges for African Americans

Unfortunately, “African Americans face a disproportionate burden when it comes to multiple myeloma. Dr. Shah says, “There may be multiple mechanisms at play, including genetics, immune dysregulation, socioeconomic factors, dietary factors, and metabolic disorders like obesity and diabetes.”

Obesity, diabetes, and poor diets are more prevalent in Black communities compared to white populations, contributing to increased risks. Research by Dr. Shah indicates that 10-19 percent of multiple myeloma cases in the United States are attributable to excess body mass index (BMI).

Elevated BMI alone accounts for 2.1-3.3 percent more multiple myeloma cases among non-Hispanic Black Americans than non-Hispanic white Americans.

The NUTRIVENTION trial was designed to explore whether a dietary intervention could alter these odds. Those enrolled were encouraged to eat as much as they wanted, as long as their meals consisted of whole, plant-based foods such as fruits, vegetables, nuts, seeds, whole grains, and legumes.

Diet and Delayed Disease Progression or Transformative Results

Clinical trial partakers discovered that making the recommended diet changes led to the following significant health benefits:

• Weight loss: Participants lost an average of 8% of their body weight within 12 weeks.
• Improved quality of life: Many participants reported feeling healthier and more energetic.
• Better metabolic health: Improvements were observed in insulin resistance and inflammation.
• Gut microbiome health: A more diverse microbiome—a key factor in immune system strength—was noted.

Dr. Shah adds, “Four of 12 participants using prescription medications self-reported stopping them, saving a median of $65 per month.” The discontinued drugs were insulin, bupropion, potassium supplement, and hydroxychloroquine.

The trial’s findings were further validated by preclinical research in a smoldering myeloma mouse model. In the study, 44 percent of mice fed the recommended diet did not progress to multiple myeloma, compared to 100 percent progression in the group fed a standard diet.

These results encourage Dr. Shah and her team to proceed with multiple dietary clinical trials. NUTRIVENTION3, in particular, has 150 participants with precursor disorders. “We’re only beginning to understand the profound impact that nutrition can have on cancer prevention,” Dr. Shah emphasized. “This research represents a major step forward in showing how plant-based diets can serve as a powerful tool not only for managing weight but also for reducing cancer risk and improving overall health.”

Making Dietary Changes for Better Health

While diet alone cannot cure multiple myeloma, research increasingly suggests it plays a vital role in delaying progression and improving quality of life. Regarding diet, Dr. Shah recommends that “people try to get at least 80-90 percent of their calories from unprocessed plant foods.”

Acknowledging that that might sound a bit overwhelming, Francesca Castro, MS, RDN, CDN, Clinical Research Dietitian Nutritionist in the Myeloma Service at Memorial Sloan Kettering Cancer Center, assures that “dietary transitioning becomes much more manageable when you take a step-by-step approach and focus on one meal at a time.” She says, “I encourage folks to set realistic daily goals and gradually build from there. For instance, start with Meatless Mondays and expand as you feel more comfortable.” Once a day, Castro also encourages her patients to add legumes (like lentils, chickpeas, or black beans) to pasta, salads, or whole grains for a boost of protein, fiber, and micronutrients. She says, “It’s important to focus on progress, not perfection.”

Here are diet transition tips that Castro says have worked well for her patients:

1. Start Small: Incorporate plant-based ingredients or meals you already enjoy, such as oatmeal, nut butter, stir-fried vegetables, or fresh fruit.
2. Batch Cook: Prepare staples like beans, whole grains, tofu, or roasted vegetables in advance for quick and balanced meals.
3. Learn and Explore: Utilize resources from the American Institute for Cancer Research (AICR) and the American College of Lifestyle Medicine (ACLM).
4. Involve Family: Cooking and transitioning with loved ones can foster support and encourage a collective shift to healthier eating habits.

Healthy, Delicious Dishes Made Easy

 

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For many Black people, integrating culturally relevant dietary strategies is essential.

Traditional ingredients like collard greens, okra, and black-eyed peas can provide crucial nutrients while honoring heritage.

The catch? Preparing these foods healthily—such as steaming them instead of frying them—maximizes their benefits.

“I always encourage patients to cook to their own flavor preferences and experiment with modifying their own recipes and making them plant-based,” says Castro. “One of our patients was Jamaican-American and predominately ate Caribbean food in the household. We found ways to modify one of her favorite recipes of ackee and saltfish by substituting the fish with hearts of palm.

Plant-based recipes to try:

Vegan Ackee and “Saltfish”: Jamaican-inspired, with hearts of palm replacing fish.

Chickpea-Stuffed Sweet Potato and Vegetarian Callaloo Soup: Nutrient-dense and flavorful dishes from MSK dietitian Karla Giboyeaux.

Apple Cinnamon Oatmeal Cups: Easy, portable breakfast packed with fiber.

Tofu Scramble: A protein-packed alternative to eggs, perfect for breakfast.

Pumpkin Spice Bread: A warm and comforting dessert.

Go to Sweet Potato Soul or Forks Over Knives for more culturally sensitive recipes.

The post  Diet May Delay Progression to Multiple Myeloma appeared first on Black Health Matters.

According to the Cleveland Clinic, multiple myeloma is a rare blood cancer that affects about seven people out of 100,000 people.

African Americans are twice more likely to be diagnosed with this cancer than other ethnicities. Currently, there is no cure for multiple myeloma, but there are a variety of treatments that can help patients live full, healthy, and increasingly long lives after diagnosis.

What Should You Do When You Experience a Relapse?

Relapse is common with multiple myeloma, even after successful treatment options like chemotherapy, immunotherapy, and stem cell transplant.

Patients who are experiencing a relapse may find themselves with concerns and several questions. For example, how do I ask my doctor questions about my treatment plan?

What if I want to get a second opinion? What are my options if I hope to recover from this again? We interviewed survivors and oncologists to get the answers.

Take Notes

Your oncology team is there to offer advice, diagnose, and recommend medication or treatment plans based on your labs and tests. However, as the patient, you are your best barometer, and you must pay close attention to the signs your body is giving you.

Keeping a notebook to stay on top of your symptoms and concerns is wise, and staying abreast of new developments in multiple myeloma medications is beneficial.

Many new developments could turn out to be helpful for you and your oncologist.

Know Your Options

Find an Advocate

Where should you begin your research? “Look into myeloma support groups – there are lots of Facebook groups that I’m aware of, as well as the American Society for Clinical Oncology (ASCO) as well as the American Society of Hematology (ASH) —they have really good patient advocate groups, and they try to educate patients on what’s new in multiple myeloma,” says Dr. Yazan Numan of Northwestern MEDICINE’s hematology and medical oncology department. Additionally, you can read articles on Black Health Matters, the Multiple Myeloma Research Foundation, and Reddit’s multiple myeloma group to see if there are new medicines or if your symptoms match up with others sharing your experience.

Know Your Body

Pay attention to subtle changes in your body and keep your team informed. Multiple myeloma patient and MMRF mentor Evelyn Huntley offers sage advice. “As myeloma patients, we have to listen to our bodies, and if it’s not within the norm, it’s time to call the healthcare team or at least send them a message in MyChart. You may have to follow up. They get busy too, and they may not respond right away, so it’s on us as patients to follow through on anything that the doctors tell us that they’re going to do or that we need from physicians.”

Know When to Seek a Second Opinion

You’ve been taking notes and asking tough questions. But how do you know when it’s time to consider finding another doctor for a second opinion? Communication is key, and the signs are in your engagement with the team, says MMRF mentor Evelyn Huntley. “When your doctors are not listening to you, or you’re unable to communicate with them…when you’re asking your physicians questions, and they appear as if they don’t want you to ask them questions, it’s time to move on. Because as a patient, they work for you.”

Be Your Own Healthcare Boss

Your doctor may be the most experienced on your care team, but if a treatment option makes you feel unwell or uncomfortable, don’t hesitate to ask questions or speak up.

Address your concerns in specific terms and keep your medical team informed about any issues that have come to light and the changes you would like to see them make in your care plan.

“I think the first thing is to really be empowered early; you know, the best defense is a good offense. As a patient, you know exactly what’s happening to your myeloma – you should be discussing that with your doctor on each visit,” says Dr. Craig Cole of the Karmanos Cancer Institute in Detroit and associate professor at Wayne State University’s medical school.

From a patient perspective, consider yourself as the manager of your team. “Your healthcare team works for you. You’re their employer — their service is not free; we pay them for that service, and they are supposed to listen and answer our questions. And when they can’t do that, or they can’t follow through on what they’re supposed to do with us as patients, then it’s time to move on,” says Huntley.

Consider Clinical Trials

Historic fears and concerns about clinical trials have led to underrepresentation in diversity in arenas like multiple myeloma research. This cancer aggressively affects the Black community, and more research is needed to address our specific needs as treatment plans are developed.

According to Dr. Craig Cole, there’s no better time to be involved in clinical trials than now. “The reason I say that is, the quality of the drugs that are in those clinical trials are at the highest level…now we have response rates that are in the 80 and 90 percentiles for a lot of these drugs. To be in the clinical trials…that means your drug has worked at an extremely high level to make it to a clinical trial for myeloma in 2024 and 2025.” The MMRF offers an avenue to explore potentially helpful clinical trials. Click here to learn more.

Relapse is common amongst multiple myeloma patients in remission. Know that you are not alone in facing this disease; hope is on the horizon. You can read more about treatment options via Northwestern MEDICINE. For more information on living as a multiple myeloma survivor, read more at Cancer.org.

The post How to Advocate for Yourself as a Multiple Myeloma Patient appeared first on Black Health Matters.

What is Multiple Myeloma?

To begin, we need to clear something up: We’re talking about Multiple Myeloma, not melanoma which are often mistaken for each other, but are very different. Melanoma is a skin cancer and myeloma is a type of blood cancer —and that’s our focus here. Myeloma is a blood cancer of the plasma cells that live in the bone marrow. Plasma cells normally make antibodies to help us fight infections. Myeloma cells are abnormal plasma cells. In Multiple Myeloma, these abnormal plasma cells can become cancerous and multiply, making it harder for our bodies to fight infection.

What are the Risk Factors for Multiple Myeloma?

The median age at diagnosis is 69 years. African Americans are younger at diagnosis by about 5 years compared to White patients. Interestingly enough, men are at a higher risk than women.

Genetics can be a factor:

Having a family history of the disease raises a person’s risk of developing Multiple Myeloma. If you have a sibling or parent with a Multiple Myeloma diagnosis, you are at an increased risk.

MGUS can be a factor:

In addition to family history, certain medical conditions can also elevate the risk. One such condition is MGUS—Monoclonal Gammopathy of Undetermined Significance—which involves the presence of an abnormal protein in the blood. Individuals diagnosed with MGUS may have a higher likelihood of developing Multiple Myeloma.

If you or someone you know is diagnosed with Multiple Myeloma, know your options.

How You Can Act: Know Your Options

Start by speaking with your healthcare provider about your personal risk factors and any available screening methods. Early conversations can help guide informed decisions.

Explore Clinical Research Opportunities

Participating in clinical research can provide access to cutting-edge research options and contribute to advancing care for others.

This communication is sponsored by Kite Pharma, A Gilead Company. Kite is committed to ensuring diverse representation in its clinical studies.

To learn more about Kite’s investigational efforts in treating Multiple Myeloma, visit: A Study Comparing Anitocabtagene Autoleucel to Standard of Care Therapy in Participants With Relapsed/ Refractory Multiple Myeloma (iMMagine-3).

Disclaimer: Clinical studies are investigational in nature. Participation is voluntary and there is no guarantee of benefit or specific outcomes. The safety and efficacy of the investigational treatments have not been established.

© 2025 Kite Pharma, Inc. All rights reserved. | VV-TMF-6286882 11/2025.
KITE is a trademark of Kite Pharma, Inc. GILEAD is a trademark of Gilead Sciences, Inc.

The post Hope & Healing: Myeloma News appeared first on Black Health Matters.

Why Your Participation Matters

Blood cancers are complex, and they can impact our community in unique ways. Black/African American patients have often been underrepresented in clinical research. This creates gaps in understanding the disease and treatments that we are working hard to close. By participating in clinical research, you can help change that – ensuring that future treatments are more equitable and inclusive in care.  This form of research paves the way for potential breakthroughs and personalized care.

A Commitment to Inclusivity and Access

At Kite, a Gilead Company, we are actively working to make participation easier and more inclusive – reducing barriers, helping every patient feel seen, respected, and empowered. We want you to feel welcome, heard, and valued every step of the way.

What You Can Expect

• Access to Cutting-Edge Research: Clinical research often provides investigational therapies that are not yet publicly available.
• Expert Oversight: Your care is closely monitored by a team of specialists who are deeply familiar with your type of cancer.
• Empowerment and Knowledge: Your participation may contribute valuable knowledge that supports the scientific community’s efforts to develop potentially safer, more effective treatments.
• Helping Others: Every participant contributes to medical progress, helping develop better care for people with the same or similar condition.

Be a Part of the Breakthrough

Choosing to participate in a clinical research study is a powerful way to contribute to cutting edge science.

Talk with your healthcare provider to learn if Clinical Research may be an option.

To learn more about how you can participate in one of Kite’s Clinical Trials for Blood Cancer, please visit Kite Clinical Trials.

This communication is sponsored by Kite Pharma, A Gilead Company. Kite is committed to ensuring diverse representation in its clinical studies.

Disclaimer: Clinical studies are investigational in nature. Participation is voluntary and there is no guarantee of benefit or specific outcomes. The safety and efficacy of the investigational treatments have not been established.

© 2025 Kite Pharma, Inc. All rights reserved. | VV-TMF-6286708 11/2025
KITE is a trademark of Kite Pharma, Inc. GILEAD is a trademark of Gilead Sciences, Inc.

The post Help Shape the Future of Blood Cancer Treatment appeared first on Black Health Matters.

Myeloma Link, a national initiative of Blood Cancer United (formerly known as the Leukemia and Lymphoma Society), aims to empower Black communities in 15 metropolitan areas by offering free education, enhancing access to quality myeloma care, and connecting patients to the latest treatments and clinical trials. Blood Cancer United is the global leader and innovator in creating a world without blood cancer. Blood Cancer United’s mission: Cure blood cancer and improve the quality of life of all patients and their families. BCU is focused on accelerating research, providing free support and services, and advocating for policies to ensure access to quality, affordable care.

Why It Matters

Multiple myeloma is the most common blood cancer among Black Americans, who face at least twice the risk of developing the disease compared to other racial groups. They are also more likely to be diagnosed at a younger age.

While overall survival rates have improved in recent years, progress has been slower for Black individuals, who:

• Receive advanced treatments such as autologous stem cell transplants and novel drug combinations at lower rates.
• Often experience delays in starting therapy.
• Remain underrepresented in clinical trials, perpetuating disparities in outcomes.

For lower-income Black Americans, barriers to care can be even more pronounced, leading to suboptimal treatment, higher hospitalization costs, and poorer quality of life.

Approach

Myeloma Link meets people where they are, partnering with trusted national and community-based institutions like fraternities, civic organizations, barbershops, churches, senior centers, and community health centers to break down barriers to care. The program leverages a network of BCU staff, trained community outreach volunteers, and healthcare professionals to:

• Raise awareness about myeloma symptoms, treatment options, and disparities in care.
• Connect patients and caregivers to trusted, free information and support services.
• Encourage participation in advanced treatment options, including clinical trials.
• Equip healthcare providers in Federally Qualified Health Centers (FQHCs) with up-to-date myeloma education resources.

Impact

Since its launch in 2017, Myeloma Link has:

• Reached more than 350,000 people, including patients, caregivers, healthcare providers, and community leaders.
• Hosted over 500 education events for patients, providers, and the general public.
• In FY 25 alone, BCU engaged 20,000+ Black community members through tailored patient and community education programs, national webinars, health fairs, provider outreach, and other national and local events.

The insights gained from implementing Myeloma Link across these cities have enabled BCU to position the program as a nationwide outreach to Black communities.

While Myeloma Link remains active in its original markets, its outreach strategies are now being applied more broadly to guide BCU’s efforts in expanding access to information and support for Black individuals in other regions across the country.

Key Learnings

• Listen first: Engage patients and community members early to shape outreach strategies and ensure materials resonate.
• Invest locally: Hire outreach specialists who understand and promote the well-being of the communities they serve.
• Collaborate widely: Partner with local and national organizations that hold trust and influence in the community.

The Bottom Line

Black Americans are disproportionately affected by multiple myeloma, yet with culturally informed outreach, trusted partnerships, and equitable access to cutting-edge care, disparities can be reduced. Myeloma Link demonstrates that when communities are empowered with knowledge, resources, and support, lives can be changed—and saved.

For more information about Blood Cancer United’s programs and services for blood cancer patients, visit BloodCancerUnited.org or call +1-888-557-7177.

The post Myeloma Link: Bridging Gaps in Care for Black Communities appeared first on Black Health Matters.

CAR T-cell therapy has emerged as a promising treatment option for a range of blood cancers. It utilizes genetically modified T cells to help target and eliminate cancer cells. CAR-T cell therapy has expanded and offers new hope for patients with previously limited treatment options.

CAR T-cell therapy is an example of how immunotherapy is transforming cancer treatment

The process of CAR T-cell therapy

CAR T-cell therapies are personalized for each patient. They are made by obtaining the patient’s T cells and recreating them in a specialized laboratory through an intricate process that can take several weeks.

NIH. National Cancer Institute.  CAR T-Cell Therapy Infographic

Cell collection

Patient’s blood is drawn, and T cells are collected, removed, and separated from the blood.

Cell creation

CAR T-cells are created in a special laboratory through a process. CAR genes are inserted into the T cells. Millions of CAR T-cells are produced.

Cell infusion

CAR T-cells are returned to the patient’s bloodstream via IV infusion in a hospital or clinic.

Cell activation

The CAR T-cells circulate in the bloodstream, attaching to the cancer cells and killing them.

Cell expansion

The CAR T-cells can continue to multiply which helps provide long-term activity of these cells with the goal of preventing cancer relapse.

Learn more about this process here.

Which blood cancers are available for CAR T-cell therapy?

The field of CAR T-cell therapy is rapidly evolving. Ongoing research is expanding its use to include additional blood cancers and solid tumors. CAR T-cell therapy provides viable treatment options for patients who may not have many options left.

Patients with blood cancers should discuss treatment options and eligibility for CAR T-cell therapy with their healthcare team to determine the most appropriate course of action based on individual patient factors.

CAR T-cell therapy can help treat the following blood cancers:

• B-cell Acute Lymphoblastic Leukemia (ALL)
• B-cell Non-Hodgkin Lymphoma (NHL)
  • Diffuse Large B-cell Lymphoma (DLBCL)
    • Primary Mediastinal B-cell Lymphoma (PMBCL)
  • Follicular Lymphoma (FL)
  • Mantle Cell Lymphoma (MCL)
• Multiple Myeloma (MM

These treatments are typically appropriate in patients who have tried and failed other treatment options. Consider discussing with your provider if CAR T-cell therapy may be an option for you.

Hope for the future

CAR T-cell therapy continues to develop with ongoing research aiming to improve its safety and effectiveness. For patients facing challenging blood cancers, CAR T-cell therapy represents a treatment option that offers hope for remission and improved quality of life.

– – –

References

• National Cancer Institute. CAR T Cells: Engineering Patients’ Immune Cells to Treat Their Cancers
• American Cancer Society. CAR T-cell Therapy and Its Side Effects

The post What is CAR T-cell Therapy? appeared first on Black Health Matters.

CAR T-cell therapy

Chimeric Antigen Receptor T-cell (CAR T-cell) therapy has shown great success in treating some blood cancers. This type of treatment uses a personal approach to target and destroy cancer cells using the immune system.

CAR T-cell therapy uses gene changes to the T-cells to effectively target cancer cells. Over the past several years, CAR T-cell therapies have been FDA approved for the treatment of different blood cancers.

Click here to learn more about CAR T-cell therapy.

Treatment for newly diagnosed disease

Treatment options for blood cancers have evolved in recent years. There are several new treatment options and strategies. The treatment used depends on many factors including age, overall health, genetics, and the cancer characteristics.

When newly diagnosed with cancer, it’s important to work closely with the healthcare team to determine the most appropriate and effective treatment plan. The treatment plan should be based on individual circumstances and the latest treatment advancements. Early diagnosis is key.

Maintenance therapy

After the first round of treatment, maintenance drug therapy is usually next. Maintenance therapy is a type of long-term treatment that is often used in blood cancers. Maintenance therapy can help prolong remission and improve overall patient survival.

The choice of maintenance therapy should be personalized. There should be shared decision-making with the healthcare team.

Looking forward

The recent advancements in the treatment of blood cancers represent progress in managing these complex and challenging types of cancer. The development of targeted therapies and immunotherapies are promising.

Research and clinical trials continue to promote progress. We must continue to raise awareness by collaborating with healthcare providers and researchers in the ongoing fight against blood cancers.

– – –

References

• American Society of Hematology. Blood cancers.
• National Cancer Institute. Multiple Myeloma Awareness and African American Disparities
• International Myeloma Foundation. Disparities in African Americans
• Leukemia & Lymphoma Society. Understanding Blood Cancers and Treatment Options.
• Multiple Myeloma Research Foundation. The latest myeloma treatment advances from ASCO 2023
• Blood Cancer Journal. Black patients with multiple myeloma have better survival than white patients when treated equally: a matched cohort study
• National Cancer Institute. CAR T Cells: Engineering Patients’ Immune Cells to Treat Their Cancers
• University of Colorado Cancer Center. Blood Cancer.
• American Society of Hematology Education Program. Newly diagnosed multiple myeloma: making sense of the menu

The post Blood Cancers and Recent Advancements in Treatment appeared first on Black Health Matters.

Multiple myeloma is a type of cancer that develops in bone marrow and can prevent the immune system from working properly. Left unchecked, myeloma cells can continue to multiply and spread causing problems in other parts of the body. Although multiple myeloma is considered a rare cancer, it is the most common form of blood cancer among African Americans. In fact, African Americans are more than twice as likely to be diagnosed with multiple myeloma compared to White Americans and are usually diagnosed at a younger age.

Evelyn, who had battled breast cancer years earlier, recalls the shock of this news, “The first few months it felt like a rollercoaster because you don’t want to believe that you have this disease.”

Through her treatment journey, she learned a lot about her condition, recognized the profound impact of a support system and became aware of the lack of representation among African Americans living with multiple myeloma. Determined to ensure that others wouldn’t have to feel alone in their own battle, she became an inspirational mentor, offering valuable insights and a comforting presence to fellow patients. With the wisdom gained through her journey, Evelyn has a wealth of advice to share, encouraging others to advocate for themselves and to never lose hope in their pursuit of a brighter tomorrow.

“Do your research.”

Evelyn knew she needed to get educated about this disease and understand her treatment options, but the heavy emotional burden made it difficult to absorb new information and ask the right questions.

Her oncologist urged her not to rely on basic internet searches for answers, which can often yield outdated information, but to seek reputable organizations, like the Multiple Myeloma Research Foundation (MMRF) and the Blood Cancer United to learn more about what multiple myeloma is and how it affects African Americans specifically. These credible sources kept her informed about treatment options, clinical trials and ways to manage the challenges associated with the disease.

One in five people living with multiple myeloma are African American, yet representation among patient advocates is limited. Evelyn recalls a conversation with an MMRF nurse who said, “A lot of times we get African American patients that call and say they want to speak to someone who looks like them, but we don’t have anyone.” It emphasized the need for better representation and support within the healthcare system, inspiring Evelyn to be that support for others living with multiple myeloma.

She recalls the first patient she mentored with fondness. “I remember pulling over and sitting in the parking lot talking for about two hours. He was crying and just trying to wrap his head around the diagnosis.” Since she had been in that position before, she began to share her experience. He saw that it wasn’t an immediate death sentence for him, but that most cases are treatable,” said Evelyn.

Their connection remains unshaken to this day, a living testament to the power of empathy and shared experiences. “He has a new outlook on life now,” she says.

“Get a second opinion.”

Her most important piece of advice to those who have just received a diagnosis is to get a second opinion from a multiple myeloma specialist. She learned that from her own oncologist who referred her to a multiple myeloma specialist. He felt her myeloma wasn’t responding as well as it could. But this doesn’t mean giving up an oncologist you’re comfortable with.

What worked for Evelyn was adding the specialist to her existing care team, expanding the treatment approaches to consider. She collaborated with her care team and they made those decisions together.

“Advocate for yourself.”

Evelyn’s experience taught her that navigating this complex disease required not only resilience but advocacy. She comes prepared with questions for her specialists, goes in for regular screenings and is keenly aware of how her body is responding to therapy. As a mentor, she empowers other patients to understand their disease and seek answers that help them feel in control of their care.

Clinical trials have played a major role in advancing treatments for multiple myeloma and other conditions, but African Americans are generally underrepresented, making it difficult to understand how treatments impact the community. As a clinical trial participant, Evelyn has encouraged others to strongly consider that option if their treatment regimen is ineffective, they are eligible and the opportunity arises. “People respond differently [to treatments]; it’s not one-size-fits-all for multiple myeloma.”

Evidence shows that African American patients who receive treatment for multiple myeloma can do just as well as, and sometimes better than, White Americans. Yet, research has shown that African Americans have benefited less from recent medical advancements that have led to improvements in survival in more recent years. As of 2022, only 4% of patients in multiple myeloma clinical trials were African American despite making up 20% of people living with multiple myeloma today. Begging Evelyn’s point, “If we don’t participate in the trial, what do we have to say?”

*        *        *        *

Evelyn’s journey has been deeply influenced by the unwavering support of her faith, family, and friends. Her faith provided her with strength, guiding her through the challenges with unwavering hope. Her family and friends, a pillar of support, offered encouragement, love, and a sense of belonging during the toughest moments.

Evelyn admits, “You have days where you give yourself a pity party. But give yourself 48 hours and then you have to get up and let it go.” When times are uncertain, Evelyn offers perspective she can stand by, “I think that with all experiences there’s something good that comes out of it.”

For more information about multiple myeloma and resources to help navigate your care in your discussions with your healthcare provider, visit MyelomaCentral.com.

Real patient compensated for sharing her experience.

The post What One Warrior Wants You to Know About Multiple Myeloma appeared first on Black Health Matters.

Roland S. Martin recalled how former Raiders player Elijah Alexander succumbed to the disease after being dismissed by healthcare professionals at the Black Health Matters Fall 2023 Health Summit & Expo. “He kept complaining about his feet hurting. The doctors kept saying, ‘Oh, it’s from your career.’ He eventually died of this very disease,” said the journalist, author, and media personality.

Advocacy can make a difference in how multiple myeloma is discovered and treated.

Martin moderated a discussion with Denise N. Bronner, PhD Director Diversity, Equity, and Inclusion in Cánical Trials Immunology Portfolio Jansen and Marsha Calloway-Campbell, J.D. Director, Black Myeloma Health, HealthTree Foundation at the summit. They discussed health disparities associated with this form of cancer. The trio was introduced by actor and producer James Pickens (Grey’s Anatomy).

Calloway-Campbell’s husband was misdiagnosed with arthritis in 2017. He had multiple myeloma. She emphasized the importance of self-advocacy. “Nobody’s going to take care of you like you, not even your family, so you have to know what signs and symptoms are of many different diseases,” said Calloway-Campbell.

How can multiple myeloma be misdiagnosed?

Myeloma lesions were mistaken for arthritis on the scans of Calloway-Campbell’s husband. Dr. Bronner was forced to advocate for her father, who suffered from multiple myeloma when healthcare workers interrogated him. They assumed he was taking drugs when he arrived with fluids on his lungs. Without her stepping in, they might not have asked the right questions. Eventually, they got “lucky” with a cardiologist who closely examined the bloodwork and realized that multiple myeloma was a possibility.

Martin cited how medical professionals can stubbornly refuse to set aside their assumptions.

“You have medical folks who say, who are you? I’m the expert,” he said. “I know what’s better.”

He raised the stereotypes of the angry Black person that patients have to fight against when facing this type of challenge.”

Prominent figures of the past are frequently used to illustrate the problem of systemic racism in the medical field. “They always talk about prejudice or racism in a historical sense,” said Dr. Bronner. “They’ll bring up Tuskegee, right? They’ll bring up Henrietta Lacks, but I said this is persistent; it’s been here, it’s ingrained in there. You have a lot of doctors who continue to have these certain ideas about you because you’re Black.”

How can medical misconceptions contribute to misdiagnosis?

Pain is a symptom of multiple myeloma, causing potential friction for patients subject to the horrors of medical racism.

“It’s a notion that Black people have a higher tolerance of pain,” added Dr. Bronner. “That’s also an issue.”

“Myeloma is a journey in and of itself, and when you add the disparities that now we’re talking about, we’re not seen, we’re not heard,” said Calloway-Campbell.

The treatment experienced by Dr. Bronner’s father was not rare. According to the Proceedings of the National Academy of Sciences of the United States of America (PNAS), “Black Americans are systematically undertreated for pain relative to white Americans.”

Calloway-Campbell described how Black patients are treated when seeking help for their pain. “Bone pain, and it’s often in your back. It’s one of the symptoms, so when you present to the ER, that’s what it is,” she said before listing a question Black patients are frequently met with. “What narcotics are you trying to get?”

Dr. Bronner recommended questioning the doctors you’re dealing with. Calloway-Campbell agreed. “Doctors are not proactive in doing the testing to see if multiple myeloma is a possibility,” she said. “When you look at many medical textbooks, we’re not there,” Dr. Bronner added. “When you look at some of the medical research that’s out there, the papers that have been published, we are not there, so you have to say to yourself what their knowledge is based on.”

Take Action!

The session provided valuable and practical tips for advocating for yourself if you suspect you’re experiencing symptoms associated with multiple myeloma.

• The acronym CRAB indicates four common symptoms you might want to consider when deciding if you should ask to be tested for multiple myeloma. C stands for high calcium, R stands for high renal urinal counts, A stands for anemia, and B stands for bone pain.
• Pushing on your doctors can result in better results. Advocate vocally and in writing. They are the experts in medicine, but you are the expert in you.
•  Pay attention to your bloodwork and track any change in the numbers to arrive armed with facts.

This session was presented by Janssen.

The panel:

Roland S. Martin, Journalist, Author, and Media Personality

Denise N. Bronner, PhD, Director Diversity, Equity, and Inclusion in Clinical Trials Immunology Portfolio Janssen

Marsha Calloway-Campbell, J.D. Director, Black Myeloma Health, HealthTree Foundation

The post My Word, My Health: Addressing Health Disparities in Multiple Myeloma appeared first on Black Health Matters.

Substantial strides have been made in enhancing survival rates, yet glaring disparities persist. Black Americans face higher diagnosis rates at younger ages and are confronted with elevated mortality rates. By joining forces, we can strive towards narrowing these gaps and fostering improved prospects for all individuals affected by multiple myeloma.

The Multiple Myeloma Research Foundation facilitates connections with specialized healthcare teams, ensure accurate diagnostic testing, and grant access to tailored treatments. Through relentless research and collaborative efforts, we envision a future unburdened by the shackles of multiple myeloma.

The post Multiple Myeloma and Its Impact on the Black Community appeared first on Black Health Matters.

The History of National Minority Health Month

Raising awareness about minority health goes all the way back to 1915, when Booker T. Washington laid the foundation. National Negro Health Week (NNHW) focused on the poor living and working conditions that plagued mostly Black neighborhoods and employment opportunities.

From there, the US Department of Health and Human Services (HHS) launched Healthy People 2010. This was the third iteration of this initiative, following previous ones in 1990 and 2000, and focused on eliminating health disparities across all ethnic minority groups.

Not long after, the US Congress called for an awareness month to promote the efforts currently underway and encourage further action to reduce the health disparities affecting minorities, establishing National Minority Health Month in April 2002.

Why Do We Celebrate It?

The goal of National Minority Health Month is to help “promote and protect the health of diverse populations through research and communication of science that addresses health disparities.” But what does this mean?

Throughout April, the FDA and other federal, state, and local agencies increase collaboration on a shared initiative, addressing health disparities through awareness and education. To better understand their goals and how they achieve them, you should know a few key concepts.

• Health equity is the equal opportunity to be healthy. While some ethnic minorities are predisposed to health conditions simply because of their race, they should have the same access to insurance coverage, medical care, community resources, language access, and health literacy that any other race has access to.

• Health disparities are the disproportionate health outcomes of one group of people compared to another because of health inequity. The Kaiser Family Foundation found that three months into the Covid-19 pandemic, almost triple the number of African Americans were hospitalized compared to white people and over twice as many had died. There were many underlying health disparities, like lower socioeconomic status and higher risk of other chronic health conditions that were not well managed.

• Health literacy is the understanding of a person’s health or the ability to find the information needed. It also includes the ability to understand the information they find, regardless of language and education barriers. Learning about clinical trials is just one part of health literacy, especially if a clinical trial applies to how your health condition may help both you and future patients.

National Minority Health Month aims to raise awareness of better health for all racial and ethnic minorities by advancing health equity, reducing health disparities, and improving health literacy.

What is This Year’s Theme?

This year’s theme is “Better Health Through Better Understanding.” While the OMHHE supports many initiatives year-round, this theme allows them to share the importance of one in particular. The Enhance Equity Initiative focuses on addressing the underrepresentation of minorities in clinical trials.

Previous National Minority Health Month themes include:

• “Give Your Community a Boost!” to encourage Covid-19 vaccination (2022)

• “Active and Healthy” to emphasize staying physically active and enhancing emotional wellness (2020)

• “Partnering for Health Equity” to raise awareness about current efforts to address the disproportionate burden of various ethnic groups in health care, housing, employment, and more (2018)

• “Accelerating Health Equity for the Nation” to create a better understanding of health disparities and how they affect racial groups (2016)

• “30 Years of Advancing Health Equity” celebrated 30 years of the Heckler Report, which helped to prove the existence of racial inequalities in health care (2015)

Why is This Important?

ProPublica published an analysis of a recent clinical trial of a medication used to treat Multiple Myeloma, a devastating blood cancer. While approximately 20% of all Multiple Myeloma patients in the US are African American, only 13 of the 722 participants in the clinical trial were Black. This is less than 2% of all participants. Because ethnic minority populations, especially Black people, seem to have a genetic predisposition to this cancer, it often leads to more severe disease complications, and they react differently to many treatment options, being so grossly underrepresented in a clinical trial may affect whether this medication is as effective for them as it is for the non-Hispanic Caucasian participants.

However, this new initiative may help raise awareness of these problems, so clinical trials include ethnic minority groups in appropriate numbers and document these participants’ results accurately. Researchers can then work toward improving health outcomes for minority populations, reducing disparities in treatment outcomes. With better communication between the FDA, other research agencies, and health providers, more minority communities can benefit from current and future clinical trials.

Conditions Affecting the Black Community

National Minority Health Month 2023 helps to raise awareness of the benefits of clinical trials through the “Better Health Through Better Understanding” initiative. Those affected by certain conditions may benefit from joining a clinical trial to both test new treatments and play a role in approving effective ones that may benefit many more patients in the future. Some conditions affect African Americans more than others and are, therefore, most important to have an accurate representation of the Black community involved.

Cardiovascular Disease

Health education is vital to the prevention of most heart disease. Some clinical studies in the past have followed those without cardiovascular disease to see who would develop it and who wouldn’t be based on family history, lifestyle choices, and other factors. Learning what risk factors could be affected and to what degree has helped providers adjust treatment based on the health needs of their patients. Current and future clinical trials continue to research risk factors and treatment options, as it is the leading cause of death among all ages, genders, and races in the United States.

Stroke

Closely tied to heart disease is the risk of stroke, which can lead to premature death in Black Americans and other minorities. It is vital that Blacks are accurately represented in clinical trials studying stroke because they are 50% more likely to have one. Black women are at the highest risk. Compared to non-Hispanic White people, over 70% more Blacks will die from their stroke. To truly understand the underlying causes of these health disparities and what can be done to address them, African Americans should be made aware of these clinical trials and encouraged to take part.

Diabetes

Prevention is key, but with so many risk factors, Type 2 diabetes may be unavoidable for some Black Americans. Diabetes comes with the risk of many disease complications, some of them life-threatening. There are ongoing clinical trials to help reduce these risks and perhaps reverse the condition. Every trial is different and may require participants in different stages of the disease or with varying demographics. If you have been diagnosed with diabetes and are interested in new treatment options, be sure to discuss the possibility of a clinical trial with your healthcare provider.

Cancer

While cancer is a leading cause of death among all races, some forms are more prevalent among Blacks. These include breast, prostate, colorectal, and lung cancer. Through various studies over the last several decades, it’s been found that the increased risk for cancer can be linked to poor diet, especially common in low-income households; environmental pollution like smog and asbestos which are frequently seen in underprivileged neighborhoods; poor lifestyle choices like smoking that have much higher rates for Black men than for Caucasians; and family history. Clinical studies for cancer are likely specific to the type, so if you are diagnosed with cancer, discuss the possibility of participating in one with your oncologist or another specialist provider.

Sickle Cell Disease

Sickle cell anemia is most often seen in infants and is a medical emergency. There are some medications available to help control the sickling of red blood cells, decrease vascular blockages, control inflammation and pain, and reduce the chance of disease complications. However, some patients may need blood transfusions or bone marrow transplants to control the disease. There are ongoing clinical trials to help develop new treatment options to better manage or treat sickle cell disease that you or your child may qualify for.

HIV/AIDS

A study published by the American Journal of Public Health found that Black men who have sex with men are 14 times more likely than non-Hispanic Whites to test positive for HIV. The number of Blacks currently living with HIV compared to Whites is nearly double and these numbers are continuing to worsen. The average age of initial infection is declining, meaning many Black men are reaching adulthood with HIV. Another study proved that many clinical trials do not accurately address minority health or even gender, although doing so is vital to improving outcomes from new HIV/AIDS treatments for African Americans and all ethnic minorities.

Conclusion

National Minority Health Month helps to raise awareness of the disproportionate burden that Black Americans face every year because of inequities in our health care system. By addressing disparities through easier access to resources and better representation in clinical trials, we may resolve these inequities soon. Black Health Matters support National Minority Health Month by supporting the well-being of African Americans through education and awareness.

The post What Is National Minority Health Month? appeared first on Black Health Matters.

Multiple Myeloma: Plasma Cell Cancer

Plasma is the fluid part of your blood, making up over half of its volume, that carries blood cells, platelets, water, salt, and other essential components throughout your body. Another vital component created by plasma is the antibodies that make up part of your immune system. It is created in the bone marrow, a spongy tissue inside your bones. “B cells” (B lymphocytes) and “T cells” (T lymphocytes and thymocytes) live in the bone marrow along with plasma. When activated by the immune system, these lymphocytes mature into plasma, giving the body the additional plasma it needs to fight infections.

Cancerous myeloma cells crowd the bone marrow, leaving no room for healthy blood cells and plasma-producing tissue. Myeloma cells produce harmful proteins that cause a long list of symptoms and complications. By the time it is diagnosed, this cancer has usually spread to several locations throughout the body, making it multiple myeloma.

Symptoms of Multiple Myeloma

While many of the signs of multiple myeloma are general and could indicate several health conditions, the most notable symptom is bone pain. This is most commonly felt in your spine or chest and can be persistent and, at times, debilitating. However, in the early stages, the disease may present very mild symptoms or none at all. In fact, routine blood work finds many cases without any complaints of symptoms or ones a patient assumes are because of a common illness like the flu. Still, you should know the symptoms of multiple myeloma that include:

• Fatigue/lethargy
• Brain fog or confusion
• Nausea
• Constipation
• Loss of appetite/weight loss
• Excessive thirst
• Numbness in your legs
• Frequent infections

As abnormal plasma cells grow in number, patients are likely to experience additional symptoms related to complications, like kidney problems. The body’s inability to attack germs leads to frequent infections, resulting in acute symptoms that should be treated as they arise.

Possible Complications

The symptoms of multiple myeloma are because of the breakdown of health bone marrow as myeloma cells crowd the limited space. Fewer healthy blood cells as the cancer worsens results in complications felt throughout the body.

• Anemia: Red blood cells are produced in the bone marrow. With fewer red blood cells, anemia may lead to a lack of energy, rapid heartbeat, dizziness, headache, and more. Some of the treatment options for multiple myeloma may even contribute to anemia in some patients.
• Bone Disease: As myeloma cells crowd the bone marrow, osteoporosis can set in, making bones thinner and more brittle. Eventually bone lesions may form, creating holes. These bones are much more likely to fracture.
• Gastrointestinal Issues: These problems are typically caused by treatments and not necessarily the disease itself. There are many ways to help relieve symptoms, including self care and medications.
• Heart and Lung Problems: Those with multiple myeloma are more likely to suffer from a blood clot, cardiovascular disease, and pulmonary hypertension because of the disease itself, treatment options, and living a more sedentary lifestyle as the disease progresses.
• Kidney Failure: One of the harmful antibodies created by abnormal plasma cells, monoclonal proteins, damages the renal tubes and glomeruli of the kidneys, eventually leading to kidney failure.
• Myelosuppression: Anemia is just one side effect of bone marrow suppression caused by the reduced production of red blood cells. Other disorders that may develop because of myelosuppression include neutropenia (low white blood cells) and thrombocytopenia (low platelets).
• Chronic Pain: The two most common forms of pain experienced by those with multiple myeloma are bone pain and peripheral neuropathy. Peripheral neuropathy is caused by damage to the nerves, especially those of the arms and legs.
• Steroid Side Effects: Long-term use of steroids can lead to both physical and mental effects that can be short-term, returning to normal once the medication is stopped, or long-term. They can include everything from muscle cramps to cataracts to personality changes.

Causes and Risk Factors

Research has suggested that monoclonal gammopathy of undetermined significance, or MGUS, can cause multiple myeloma cells to form. Excess amounts of M protein in your blood begin formation in the bone marrow, which could be the first sign that something is amiss. There is no treatment required for MGUS, but your healthcare provider should monitor it for any changes.

Researchers and providers have determined other risk factors for multiple myeloma that include:

• Age: MM is rare in those under 35, but those over 65 are at highest risk.
• Gender: Men are more likely to develop multiple myeloma than women.
• Family History: Many people with multiple myeloma do not have any family history of the disease. Still, genetics may contribute to risk.
• Health: Pre-existing conditions affecting the immune system or inflammatory conditions like cardiovascular disease increase risk.
• Chemical or Radiation Exposure: Being exposed to some pesticides and herbicides increases risk, as does prolonged exposure to radiation.
• Previous Plasma Cell Tumor: Also known as solitary plasmacytoma, these tumors increase the chance of develop multiple myeloma in the future.
• Occupation: Some studies have shown that those in certain professions are at higher risk, like firefighters.

Multiple Myeloma Treatments

Those with multiple myeloma will likely work with a team of providers to help treat the cancer and improve quality of life. This will include a primary care provider, dietician, physical or occupational therapist, orthopedic surgeon, radiation oncologist, bone marrow transplant specialist, and others. It’s vital for the team to coordinate efforts to ensure you get the best care possible and that treatments are effective at managing symptoms.

Types of multiple myeloma treatment options include:

• Surgery
• Radiation therapy
• Medication
• Stem cell transplant
• CAR T-cell therapy
• Supportive treatments
• Clinical trails
• Complementary medicine
• Palliative care

Multiple Myeloma and Black People

As frightening a disease as multiple myeloma is, it is more so for the black race. From genetics to socioeconomic status, Black people suffer from more risk factors than white people. These risk factors are compounded by clinical trials that fail to account for them.

Startling Statistics

The International Myeloma Foundation estimates that African Americans will make up nearly a quarter of the newly diagnosed cases of multiple myeloma by 2034. Yet, today, they only account for 8% of the participants in clinical trials.

Just as alarming is how many Black people are affected by multiple myeloma today. Black people are typically diagnosed at an earlier age and are twice as likely to be diagnosed as white people. They are also twice as likely to die from the disease. It is the number one most common blood cancer in the African American population, including those of mixed race.

More troubling is that the average African American patient is less likely to:

• Receive a timely diagnosis
• Turn to novel therapies like bortezomib
• Research new treatments
• Utilize stem cell transplant or CAR T-Cell therapy
• Receive inpatient chemotherapy
• Have access to culturally sensitive palliative care options

Biological Factors

Studies published in the Blood Cancer Journal have shown that MGUS and other plasma cell disorders are much more likely in those with family history, making them strong risk factors. Because Black women are already twice as likely to experience MGUS as white women, this increases the risk of developing multiple myeloma as well. Other studies seem to support these findings. Studies have shown that multiple myeloma is closely linked with biological risk factors, such as cardiovascular disease, diabetes, and obesity. These health conditions, and cancer in general, are known to affect the Black race disproportionately.

Socioeconomic Factors

The black community is less likely to receive preventative healthcare because they are also less likely to have adequate health insurance to cover such care. Many cases of multiple myeloma are diagnosed before symptoms even arise, caught early during routine lab work. A primary medical provider can often detect MGUS, a precursor to multiple myeloma, early and monitor it closely. Even with health insurance, Black people may not have a clinic or hospital nearby at which to seek such preventative care, “letting it slide” when they do experience mild symptoms.

If diagnosed, many African Americans don’t have access to the most effective new treatments. Socioeconomic status may mean they have limited or no health insurance to cover them and lack proximity to clinics with modern healthcare technology. When cancer symptoms worsen, lack of access to the most effective treatments, combined with limited palliative care options, may decrease quality of life and life expectancy. Without racial equality in cancer care because of socioeconomic factors, the black population suffers.

Cancer Research

Black Americans are often underrepresented in research studies and clinical trials for multiple myeloma. In one study referenced by WebMD, they estimated that only 18% of those taking part were from various ethnic groups. Non-Hispanic white people made up the vast majority. Considering the biological factors putting black people at higher risk for the disease, this puts them at a disadvantage for developing new and more effective treatment options. There are many reasons for this disparity, from lack of awareness of such studies to proximity to study locations. Still, this inequity in minority representation needs to be addressed for this and other plasma cell disorders, so researchers can better understand what role ethnic background plays in determining risk.

Multiple Myeloma: It’s In Our Bones

Research has shown that, when given an equal opportunity for healthcare and financial stability, outcomes for Black people are similar to those of European ancestry. By promoting clinical trials and researching new treatments, fighting for equality in healthcare and addressing disparities within Black communities, we can improve the well-being of all African Americans, including those suffering from multiple myeloma. By raising awareness, Black Health Matters is helping to address this important issue for African American and multiracial people.

The post Understanding Multiple Myeloma: Answering The Questions appeared first on Black Health Matters.

Multiple myeloma is a cancer of a person’s white plasma cells, the cells that fight infection and disease, and it can permanently weaken bones and damage organs. It’s a rare and incurable disease that often returns even after successful treatment.

Black people are more than twice as likely to be diagnosed with multiple myeloma than White people, and there’s some debate as to why they’re at greater risk. Black patients with multiple myeloma do, however, live longer than White patients with similar disease symptoms when both receive the same treatments.

Most people have never heard of multiple myeloma when they’re diagnosed. We at BHM understand the lack of familiarity could make a multiple myeloma diagnosis more difficult emotionally than other cancers. While it’s more anxiety and stress because you don’t know what to expect, there are ways you can take control of the situation to help you achieve the best outcome.

First, remain hopeful. People with multiple myeloma are living longer than ever before. There is no cure, but many medical advancements have been made over the past decade. In the 1990s, about 3 in 10 patients survived five years after being diagnosed. Today, about half of all multiple myeloma patients may expect to survive five years or more5.

Build a care team. After receiving a diagnosis of multiple myeloma, it is important to build your care team. Your care team should include a multiple myeloma specialist. Given many treatment options, new drug approvals, and ongoing clinical trials, it helps to have a specialist who’s on top of new developments as they come. (If you are interested in learning more about if you are eligible for a trial from Bristol Myers Squibb, click ’s here.)

Keep a notebook. After a multiple myeloma diagnosis, a lot of information will be coming your way from your cancer care team—much of which can be hard to remember. You should start taking notes as soon as you’re diagnosed, regardless of what type of medical professional you are seeing. Keep track of any questions, dates, medicine schedules, and how you are feeling. All of this important information will be helpful to your cancer care team.

Eat a healthy diet. Eating a healthy diet may help improve some multiple myeloma symptoms. Eating well may also help alleviate some psychological symptoms, such as depression and anxiety, that many people with multiple myeloma can experience. Eating well ensures you get the nutrients your body needs to boost your immunity, improve your strength, and positively impact your overall health and well-being.6

Talk openly with your family and friends. Be open about your diagnosis and your needs. Your healthcare team can teach you how to tell others. Many people in your life will want to help and support you. Determine who can be your primary caregiver and ask for their help. MyLifeLine.org7 is one tool that can connect your friends and family with the kinds of help you need.

Try to be mindful and relax. You should focus on being peaceful and present, although it’s not always easy to feel calm when you’re dealing with multiple myeloma. Start with things that help you relax such as a walk, yoga, meditation, or cooking. There are also meditations, mindfulness, and hypnosis apps that can help.

Multiple myeloma is managed over many years, and ultimately, the goal is to make a plan that gives you as much control as possible. There are many organizations, support groups, and other resources you can leverage along the way.

The post Taking Control When You’re Diagnosed with Multiple Myeloma  appeared first on Black Health Matters.

Multiple myeloma is a cancer of a person’s white plasma cells, the cells that fight infection and disease, and it can permanently weaken bones and damage organs. It’s a rare and incurable disease that often returns after successful treatment.^[2]

When you have multiple myeloma, sometimes eating is the last thing you want to do. The symptoms of this illness and the effects of treatment can make it hard to have an appetite or eat as much as you want to. But getting the right nutrients and enough of them is an important part of getting well.^[3]

A few diet tips and tricks can make it easier to eat well and nourish your body. Also, ask your doctor about working with a dietitian, who can help you choose the right foods. Here are some dietary tips from the Leukemia & Lymphoma Society^[4] for individuals undergoing treatment for multiple myeloma:

• Maintain a healthy weight. Depending on what type of treatment you undergo for multiple myeloma, you may experience weight changes. Aim to maintain a healthy weight during treatment, avoiding excess gain or loss. Strict dieting during treatment is not recommended.
• Eat small, frequent meals throughout the day. Eating frequent small meals will ensure your body is getting adequate calories, protein, and nutrients to endure treatment. Smaller meals may also help to minimize treatment-related side effects such as nausea. Try eating 5-6 small meals or “mini” meals about every 3 hours.
• Choose foods that are bland and easy on your stomach. Since medications used to treat multiple myeloma often cause nausea and vomiting, avoid foods that are spicy and fried. Avoid foods with strong odors. Instead, choose foods that are at room temperature and bland such as crackers, cheese, canned fruit, yogurt, toast, potatoes, rice, and pasta.
• Choose protein-rich foods. Protein helps the body to repair cells and tissues. It also aids in the recovery and maintenance of the immune system. Choose to include a source of lean protein at all meals and snacks. Good sources of lean protein include lean meats (chicken, fish, or turkey), eggs, nuts, beans, and soy foods.
• Eat a variety of fruits and vegetables every day. Fruits and vegetables offer the body antioxidants which can help fight against cancer. Choose a variety of colorful fruits and vegetables to get the greatest benefit. Aim to eat a minimum of 5 servings of whole fruits and vegetables daily.
• Stay hydrated. Drinking enough fluids during cancer treatment is important for preventing dehydration. Aim to drink 64 ounces of fluid daily. Avoid drinking large amounts of caffeinated beverages as too much caffeine can lead to dehydration.
• Limit sweets and added sugars. Foods high in added sugars like desserts and sweets provide little nutritional benefit and often take the place of other nutritious foods.
• Drink alcohol in moderation, if at all. Alcohol may contribute to dehydration, can impair the immune system, and provides no beneficial nutrients.
• Be observant of changes in bowel habits. Chemotherapy can sometimes cause changes in bowel habits, such as constipation, bloating, and gas. It is important for you to communicate with your healthcare team any changes in your bowel habits. Changes in your food choices or medications may be necessary to manage these side effects.
• Talk to your healthcare team before taking any vitamins or supplements. Some medications and cancer treatments may interact with vitamins and supplements. Choose food first as the primary source for nutrients.

Nutrition is particularly important for patients who might be considering trials ^[5]. You can find out if you’re eligible for Bristol Myers Squibb multiple myeloma trials here.

Your multiple myeloma journey is unique to you and your treatment. You may experience side effects that affect your ability to follow these suggestions. A registered dietitian can suggest nutrition guidelines that may be appropriate for your particular journey.

^[1] https://pearlpoint.org/i-have-multiple-myeloma-what-should-i-eat/, Accessed September 30, 2022
^[2]  https://www.cancer.org/cancer/multiple-myeloma/after-treatment/follow-up.html, Accessed September 30, 2022
^[3] https://www.webmd.com/cancer/multiple-myeloma/diet-blood-cancer-myeloma, Accessed September 30, 2022
^[4]https://pearlpoint.org/i-have-multiple-myeloma-what-should-i-eat/#:~:text=Aim%20to%20eat%20a%20minimum,broiled%2C%20or%20grilled%20foods%20instead., Accessed September 30, 2022
^[5] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5654371/, Accessed September 30, 2022

The post Maintaining Nutrition When You Have Multiple Myeloma appeared first on Black Health Matters.

Multiple myeloma is a cancer of a person’s white plasma cells, the cells that fight infection and disease, and it can permanently weaken bones and damage organs. It’s a rare and incurable disease that often returns after successful treatment.^[1]

For some people with multiple myeloma, treatment can remove or destroy the cancer, according to the American Cancer Society. For others, the cancer might never go away completely, and you might get regular treatment with chemotherapy and other treatments to try and keep the cancer in check.^[2]

In both cases, there’s a certain level of strength and anxiety involved, either because you’re worried about cancer returning after successful treatment or that you’re learning to live with cancer that doesn’t go away.

But you can return to some familiar things and make new choices as part of your journey after you’ve faced multiple myeloma, advises the American Cancer Society^[3]:

• Follow-up care: During and after treatment, it’s very important to go to all follow-up appointments. During these visits, your doctor will ask about symptoms, examine you and order blood tests or imaging tests such as CT scans or x-rays. Follow-up is needed to see if the cancer has come back, if more treatment is needed, and to check for any side effects. This is the time to talk to your cancer care team about any changes or problems you notice and any questions or concerns you have.
• Ask your doctor for a survivorship care plan^[4]: A survivorship care plan is a record of your cancer and treatment history, as well as any check-ups or follow-up tests you need in the future. Those tests include early detection, or screening, tests for other types of cancer, or tests to look for long-term health effects from your cancer or its treatment. This plan could also include diet and physical activity suggestions and reminders to keep your appointments for your primary care physician, who will monitor your general health care.
• Keep health insurance and copies of your medical records: Even after treatment, it’s very important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think about their cancer coming back, this could happen. At some point after your cancer treatment, you might find yourself seeing a new doctor who doesn’t know about your medical history. It’s important to keep copies of your medical records to give your new doctor the details of your diagnosis and treatment.
• Take steps to lower your risk of multiple myeloma progressing or coming back: If you have (or have had) multiple myeloma, you probably want to know if there are things you can do that might lower your risk of the cancer growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements. Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight might help, but no one knows for sure. However, medical professionals say these types of changes can have positive effects on your health that can extend beyond your risk of myeloma or other cancers.
• What to do if the multiple myeloma comes back: If the cancer does recur at some point, your treatment options will depend on where the cancer is located, what treatments you’ve had before, and your health. Speak to your doctor about approaches, particularly if you should consider clinical trials. You can find out if you’re eligible for Bristol Myers Squibb multiple myeloma trials here.
• Get emotional support: Some amount of feeling depressed, anxious, or worried is normal when multiple myeloma is a part of your life. Some people are affected more than others. But everyone can benefit from help and support from other people, whether friends and family, religious groups, support groups, professional counselors, or others.

^[1] https://www.cancer.org/cancer/multiple-myeloma/after-treatment/follow-up.html, Accessed September 30, 2022
^[2] https://www.cancer.org/cancer/multiple-myeloma/after-treatment/follow-up.html, Accessed September 30, 2022
^[3] https://www.cancer.org/cancer/multiple-myeloma/after-treatment/follow-up.html, Accessed September 30, 2022
^[4]https://www.cancer.org/treatment/survivorship-during-and-after-treatment/long-term-health-concerns/survivorship-care-plans.html, Accessed September 30, 2022

The post Life After Multiple Myeloma appeared first on Black Health Matters.

Symptoms of relapse may be similar to the initial onset of multiple myeloma, different or nonexistent.

Here’s a list of some things you might experience:

• Bone pain (especially in your spine or chest)
• Weakness in numbness in your legs
• Unexplained broken bones or fractures
• Recurrent unexplained infections (sinus, UTI, pneumonia)
• Nausea
• Constipation
• Loss of appetite
• Mental fogginess or confusion
• Fatigue
• Weight loss
• Excessive thirst

Multiple myeloma is rare, with approximately 34,000 new cases diagnosed in the U.S. each year. In total, the disease accounts for about 1 to 2% of all cancers diagnosed, and about 10% of all blood cancers. Multiple myeloma is more common in men than in women and tends to arise in older adults (the average age of diagnosis is 65-70).

Multiple myeloma is twice as common in the Black community and is twice as deadly in Black patients compared to White patients. Additionally, the conditions associated with the development of multiple myeloma (including monoclonal gammopathy of undetermined significance, or MGUS, the existence of an abnormal protein) are seen frequently in Black patients, according to the Multiple Myeloma Research Foundation.

Modern therapies have transformed multiple myeloma from a fatal disease to a chronic, manageable condition for many patients. Some people live 10 years or more with multiple myeloma. As with most types of cancer, early diagnosis and treatment help people live longer. Standard treatment options include targeted therapy, immunotherapy, chemotherapy, bone marrow transplant, corticosteroids, or radiation.

Living with multiple myeloma can be difficult because it’s a remitting and relapsing disease: periods of response to treatment and remission are followed by relapse. Generally, the definition of relapse in multiple myeloma is the reappearance of signs and symptoms of a disease after a period of improvement, while refractory means a disease is no longer responding to treatment, according to the International Myeloma Foundation.

Most patients will experience several remissions and several relapses throughout their disease course. That’s why after the initial treatment for multiple myeloma, follow-up care is essential. Maintenance therapy to reduce the risk of relapse, or catching relapse early, are essential steps to managing the disease. During regular check-ups, the following may be performed to check for signs of relapse:

• Blood and urine tests.
• Biopsies for bone-marrow evaluation.
• Imaging scans for bone evaluation.

You may also experience symptoms when you’re relapsing, which may be similar to or different than the initial onset of multiple myeloma. Symptoms may include bone pain, broken bones from a minor injury, shortness of breath, fatigue, easily bruised skin, or extreme thirst. You may not experience any symptoms. Therefore, it’s very important not to miss your check-ups.

Your treatment plan for relapsed multiple myeloma depends on how long your multiple myeloma has been in remission, the treatment you had before, how well the treatments you have had worked, and your general health. The approach might include:

• Watchful waiting (for slow-progressing, stable disease).
• The same treatment you initially had.
• A stem cell transplant.
• The combination of different therapies.
• Recommendation of a clinical trial with new therapies.

Relapsed/Refractory multiple myeloma, or RRMM, describes when multiple myeloma comes back but doesn’t respond to the same therapies that worked before. It’s important to note that there’s no standard therapy approach for patients who develop the condition.

Multiple myeloma can be difficult to cope with. Knowing that it is going to come back at some point but not knowing when is especially hard. The time between remission and relapse varies from person to person. Some people have months and others have years. Paying attention to your emotional health is critical as is talking to your healthcare provider about your situation so you know what to expect.

While there’s no sure way to lower the risk of relapse, maintaining a healthy weight, getting enough rest, abstaining from smoking, getting regular physical exercise, and eating a well-rounded diet may benefit your general health.

The post Multiple Myeloma—What Happens If It Comes Back? appeared first on Black Health Matters.

Multiple myeloma is a cancer of a person’s plasma cells, cells that fight infection and disease. This disease can weaken bones and damage organs and accounts for about 1 to 2% of all cancers diagnosed, and about 10% of all blood cancers.

Most patients will experience several remissions (when signs and symptoms of the disease are reduced) and several relapses (when the disease returns after a period of improvement) or recurrences throughout their disease course. Many are also told by their doctors they now have refractory disease, when it no longer responds to treatment. Symptoms of relapse may be similar to the initial onset of multiple myeloma, different or nonexistent.

Modern therapies have transformed multiple myeloma from a fatal disease to a chronic, manageable condition for many patients.. As with most types of cancer, early diagnosis and treatment help people live longer.

Clinical research is used for all types and stages of multiple myeloma. Many focus on potential new treatments and combination treatments to learn if they are safe, effective, and possibly better than the existing treatments. In general, these types of studies examine the following:

• New drugs or treatments
• Different combinations of existing drugs or treatments
• New approaches to radiation therapy or surgery
• New methods of treatment

Clinical research has played a major role in advancing the treatment of multiple myeloma, researchers say.  “As recently as 15 years ago, patients with multiple myeloma didn’t have many treatment options,” says Dr. Craig Cole, a hematologist at the University of Michigan Comprehensive Cancer Center in Ann Arbor, Michigan. “But thanks to clinical trials, many new treatments have been approved.”

“Multiple myeloma is twice as common in the Black community, and is twice as deadly in Black patients compared to White patients. While there aren’t specifics as to why Blacks are more likely to get multiple myeloma, it’s likely linked to a genetic cause that is the difference between the races,” says Dr. Cole.

Blacks account for 20% of multiple myeloma cases despite being 13.4% of the U.S. population and they are still underrepresented in clinical trials. Only 8.6% of patients in multiple myeloma clinical trials were Black, an unfortunate figure since it’s estimated that Blacks will represent almost 24% of cases by 2034.

“The number of African Americans enrolled in clinical trials of novel agents or treatments of multiple myeloma has been tragically low,” says Dr. Kenneth C. Anderson of the Dana-Farber Cancer Institute in Boston.  “When they have enrolled, their outcome to treatment with novel therapies has been the same or even better than other patients.”

You might decide to enroll in a multiple myeloma clinical trial/research study if:

• The treatments you’ve tried haven’t worked.
• Your cancer has come back after treatment.
• You want to contribute to cancer research and help other people with multiple myeloma.

The post The Importance of Clinical Research for Patients With Multiple Myeloma appeared first on Black Health Matters.

What is a clinical research study and why is it important?

A clinical trial, also called a clinical research study, is a carefully designed scientific evaluation of an investigational medication. Clinical trials help doctors and researchers determine if an investigational medication is safe and/or effective for use in humans to potentially treat a condition, disease, or disorder. Clinical trials are completely optional and each one has a specific set of criteria a participant must meet to join. Clinical studies, conducted by doctors and researchers, often require a large number of volunteers to participate in a single study, and sometimes thousands are needed to obtain reliable information.

What can I expect if I join a clinical trial?

If you qualify and choose to join a clinical trial, you will first sign an informed consent form (ICF). “Informed Consent” is a process of information exchange before an adult agrees to participate in research. During this process you will be asked to read the ICF, and a study doctor or member of the research team will explain all the details of the study and answer your questions. By signing the ICF you agree to volunteer to take part in the study, you understand the study procedures, risks and potential side effects, and that you can leave the study at any time, for any reason. If you don’t understand what is expected of you or what is written in the document, you should continue to ask questions and talk with the study doctor, your family, or others that you trust, until you feel you understand.

What is the purpose of the AURIGA study?

The purpose of this clinical research study is to determine the safety and efficacy of the addition of an investigational medication to standard of care maintenance treatment. The investigational medication is being evaluated in people who have multiple myeloma.

Am I eligible for the AURIGA study?

You may be able to participate in this study if you:

• Are 18 to 79 years of age
• Have a diagnosis of multiple myeloma
• Have received previous treatment for multiple myeloma and a stem cell transplant, or are planning to receive a stem cell transplant

Additional eligibility criteria will be assessed by the study doctor or staff during the screening process prior to being enrolled in the study and receiving any investigational medication. Not all individuals may qualify to participate in the research.

What can I expect if I join the AURIGA study?

If you qualify and choose to join the study and sign the informed consent form (ICF), you will be asked to attend a screening visit with the study doctor. At this visit, you will undergo tests and procedures to determine if you are a good match for continuing in the study.

• If eligible, you could be in the study for 3-4 years and visit the study doctor or clinical research staff up to 46 times.
• You will be randomly assigned to one of two study groups. This means you may either receive the investigational medication plus standard of care treatment or standard of care treatment alone.
• You will know what group you are assigned.
• Qualified patients may receive an investigational medication and some study-required medical care at no cost.

What is expected during my participation in the AURIGA study?

Your study doctor and research staff will guide you throughout your participation in the study. However, you can expect the following general expectations:

• Tell the study doctor/staff about any health problems you have during the study
• Complete your study diary and bring it to all study visits
• Come to all study visit appointments
• Ask the study doctor/staff any questions you have about the study
• Tell the study doctor/staff about any new medicine you take during the study, as well as any changes to your medicines

How do I learn more about participation in the AURIGA study?

You can talk to your doctor to find out if you are a candidate for a clinical trial. You can learn more about the AURIGA study which is posted on the Sparkcures website, click here to visit the study page.

Where can I go to learn more about Multiple Myeloma?

There are several online resources available. For further information and research support groups consider visiting the following websites. Consider asking your doctor if they can recommend local support groups near you.

• American Cancer Society’s Cancer Survivors Network: Connect with other people with cancer and their families through discussion boards, chat rooms and private CSN email addresses.
• International Myeloma Foundation’s Smart Patients Myeloma Community: Learn about available treatments and clinical trials for Multiple myeloma. Learn about the experiences of other people living with the condition, as well as the experiences of their families and caregivers.
• Cancer Hope Network: Talk or engage in a live chat with a cancer survivor who’s faced and recovered from a situation similar to yours.
• International Myeloma Foundation: You can find more support groups by visiting this website.
• Multiple Myeloma Research Foundation: Learn more about treatments and clinical trials
• SparkCures: Learn about treatment options, multiple myeloma specialists, and find available clinical trials near you.

 This article is brought to you by Janssen.

The post Newly Diagnosed With Multiple Myeloma? Learn If a Clinical Trial Is Right For You appeared first on Black Health Matters.

I expected a splint or maybe a cast, but the doctor insisted on running routine blood and urine tests, which showed less than routine results. I was told I had elevated protein levels and was referred to a hematologist, urologist, nephrologist, and oncologist to learn more. After a few months of more tests and questions, my hematology and oncology team officially diagnosed me with multiple myeloma, a blood cancer, in January 2018. 

A lifeline of support for me was The Leukemia and Lymphoma Society’s Information Resource Center (IRC) where I received free one-on-one educational resources from trained oncology staff. Through the IRC, I learned more about my condition and lifestyle needs from dietitians, oncology social workers, nurses, and other health educators. 

It was through LLS’ IRC I learned that Black Americans have at least twice the incidence of myeloma as any other race or ethnicity. Black men have the highest risk of anyone. We also receive less care and more frequently experience treatment delays. I was lucky enough to avoid these issues. Cancer is an incredibly expensive disease, and while I had the insurance to cover these charges, others do not. 

LLS has made it part of their mission to provide access to care for Black communities through Myeloma Link: 

• Myeloma Link is a grassroots effort that directly connects Black patients and caregivers to free myeloma education, information, support, and access to care.   
• Community Outreach through myeloma awareness community education programs, patient education programs, and partnerships with senior centers and libraries help LLS reach these communities to share these critical health resources. 
• Caregiver Support is offered through LLS. As my caregiver, my wife also called the IRC with questions about my treatment. Being able to talk one-on-one with experts helped us both feel empowered and encouraged about my treatment. 

LLS was critical to my treatment and support plan, and now that I’m in remission, I’ve joined their mission to address health equity in Black communities.  In 2019, I became a community outreach volunteer, which allowed me to interact with families going through blood cancer diagnoses and guide them to LLS. In 2021, I joined LLS staff as a Myeloma Link Community Outreach Manager. My role helps bring LLS’ myeloma support and resources to the Black community.  

When working with patients and their families, I always stress the importance of people getting accurate and medically backed information. Folks should first focus on listening to their care teams and providers, then clarifying any further questions or confusion with the free education available from trusted sources like the blood cancer experts at LLS. I strive to guide patients toward evidence-based information. 

If you or someone you love is struggling with myeloma, call us at 1-844-955-LINK or email MyelomaLink@LLS.org to get free support services and education. 

The post Myeloma Support and Resources From The Leukemia & Lymphoma Society appeared first on Black Health Matters.

So, what exactly is multiple myeloma and why do these disparities exist? Multiple myeloma is a type of cancer that develops in plasma cells in bone marrow—the soft, sponge-like tissue in the center of bones.

Plasma cells are white blood cells that secrete antibodies that help our bodies fight off bacteria, viruses, infection, and disease. Multiple myeloma occurs when plasma cells become cancerous and grow out of control so much so that they outnumber normal cells.

Individuals diagnosed with multiple myeloma can either have primary refractory myeloma (multiple myeloma that does not respond to initial treatment) or relapsed and refractory myeloma (multiple myeloma that initially responds to treatment but then stops responding to it after a time).

If you have been diagnosed with relapsed and refractory myeloma, you may want to consider participating in a multiple myeloma clinical study. By volunteering as a study participant, you’ll have access to healthcare professionals that will answer your questions and provide support to help you understand for which investigative treatment you may qualify.

Genetic disparities

Multiple myeloma is the most common type of blood cancer that affects African Americans. One factor that can explain why African Americans are at a higher risk of developing multiple myeloma, is genetics. For example, the pre-myeloma condition MGUS (monoclonal gammopathy of undetermined significance) is found to be more common in African Americans. MGUS is a condition in which a higher-than-normal level of an abnormal protein is present in the blood. MGUS is mostly benign, but it can develop into multiple myeloma.

A recent study sampled and compared bone marrow DNA from patients of African and European ancestry who had been diagnosed with a monoclonal gammopathy. The study found that those with 80% or greater African ancestry were also more likely to have certain cytogenetic abnormalities that are observed in multiple myeloma. Research is still ongoing, however, the findings in this study may help explain why multiple myeloma shows up differently in African Americans than in white Americans due to certain genetic markers.

African Americans who have been diagnosed with multiple myeloma are also more likely to have a genetic mutation called translocation—which is an abnormal change in the DNA where chromosomes break off and connect to other chromosomes. Translocations may contribute to the aggressiveness of multiple myeloma and certain translocations are linked to poorer outcomes.

Because multiple myeloma shows up differently in African Americans, it’s critical for African Americans to be represented in clinical studies. African American participation is valuable because it allows researchers and healthcare professionals to further understand multiple myeloma in African Americans and develop potentially better treatment options for them in the future. Without participation, African Americans will continue to be at a disadvantage in health outcomes.

Healthcare disparities

Healthcare disparities and a lack of representation in research studies contribute to higher fatality rates in African Americans. What does this look like? Access to healthcare is a major contributing factor to health outcomes and African Americans account for 23.1% of uninsured adult persons nationwide. In addition, African Americans are more likely to experience a delayed diagnosis and are less likely to be offered novel treatment options and resources.

To address these disparities, African American representation is needed in multiple myeloma disease research. Today, only 6% of multiple myeloma research participants are African American, yet African Americans make up 20% of all multiple myeloma cases in the U.S.

To see if you’re eligible for a study on multiple myeloma, visit SparkCures.

The post African Americans at Higher Risk of Developing Multiple Myeloma Cancer appeared first on Black Health Matters.

Like most blood cancers, multiple myeloma starts developing in the plasma cells of the body’s bone marrow, the spongy tissue in the center of most bones, and spreads to other parts of the body. Multiple myeloma can be either primary refractory myeloma, which means it does not respond to treatment, or relapsed and refractory myeloma which means that the disease will go through phases where it responds or does not respond to treatment or when a person with myeloma experiences a progression of myeloma within 60 days of receiving the last dose of treatment.

African Americans are twice as likely to develop multiple myeloma than other ethnicities and are faced with greater mortality rates. In addition, studies have shown that multiple myeloma is different in African Americans than in white Americans. For example, African Americans on average have an earlier age of onset of multiple myeloma compared to white Americans. Research is ongoing to find out why these disparities exist. However, genetic predispositions to pre-myeloma underlying conditions such as MGUS (monoclonal gammopathy of undetermined significance)—a benign condition in which the body produces abnormal proteins in the blood—may explain why African Americans are more at risk for developing multiple myeloma.

Increased survival rates and better health outcomes for multiple myeloma patients are often the result of autologous stem cell transplants, newer drugs, using these newer drugs in combination, and early care. Despite being more likely to develop multiple myeloma and experiencing lower survival rates, African Americans only make up 6% of all multiple myeloma clinical study participants.

Disparities in health outcomes for African Americans living with multiple myeloma can be attributed to several factors. African American patients are significantly less likely to be offered a stem cell transplant, and experience extended average time to first-line therapy initiation which impacts the likelihood of early care. African Americans are also less likely to be referred as patients for clinical studies by their healthcare providers. This could be because of poor patient-provider relationships, conscious and unconscious bias, cultural insensitivity, and a lack of available minority investigators. In addition, socioeconomic barriers such as transportation, cost, and access to healthcare limit African Americans’ access to timely and quality healthcare.

While disparities in multiple myeloma diagnoses and mortality rates are evident in African American health outcomes and multiple myeloma remains incurable, currently approved treatment options are available and can aid in prolonging or sustaining remission.

If you have been diagnosed with multiple myeloma, you may be eligible to participate in a multiple myeloma clinical study. As a study participant, you may have access to investigative drugs and healthcare professionals that will be able to answer questions you may have about the study.

To see if you’re eligible for a study on multiple myeloma, visit SparkCures.

The post For African Americans, Health Disparities in Multiple Myeloma Can Be Addressed by Greater Participation in Research Studies appeared first on Black Health Matters.

So what should you know about this disease? From what symptoms to look out for to how to influence the care you receive after a diagnosis, you will learn everything you need to know in our “Multiple Myeloma: Don’t Guess” session.

Held during our recent Black Health Matters Kappa Summit and moderated by Bill Whyte (Head, Janssen North America Pharmaceuticals, Strategic Partnerships), this discussion featured the expertise of Dr. Brandon Blue, Dr. Bishop Horace Smith and patient advocate, Dr. Tiffany Williams.

According to Dr. Blue, the best way to learn about this disease is to talk about it. Let’s start with symptoms. Early signs of multiple myeloma include severe fatigue, low white blood cell count, anemia and in severe cases, bone fractures.

But you shouldn’t wait until you notice symptoms to check in with your doctors. Dr. Smith encourages African Americans to get regular check-ups so that if there is a diagnosis, the treatments can start earlier. “Often, we wait until we have symptoms to get a diagnosis,” he explained.

African Americans are getting multiple myeloma at younger ages, with higher rates of diagnosis, as well as having the highest rates of mortality. They’re also more likely to be misdiagnosed with renal dysfunction, anemia, bone fracture, and hypercalcemia. Doctors often brush off key symptoms as “typical” health issues that African Americans experience instead of doing the bone marrow biopsy test to confirm if it is multiple myeloma.

Though these disparities exist, communicating well with your doctor can play a role in receiving the care you deserve. Fortunately, there are various treatments available including chemotherapy, stem cell transplantation and anti-cancer drugs like Darzalex.

Even better, multiple myeloma patients can live in remission for many years. For example, stem cell transplant is one of the best therapeutic options available, but black people are not receiving this treatment at the same rates white people are. So it’s beneficial to ask your doctor about options, educate yourself, and get a second opinion as well.

“I am so encouraged and excited by the advancement in treatment because I know that this is an incurable cancer that I am living with and one day I might need more treatment,” shared Tiffany Williams, who was diagnosed with multiple myeloma at 46.

Want to learn more? Watch the full session in the video below.

This article is brought to you by Janssen.

The post What You Need to Know to Take the Guesswork Out of Multiple Myeloma appeared first on Black Health Matters.

It is common for someone with MM to go through several of these cycles. The time between receiving medicine, response, and relapse—as well as the number of cycles—can vary from person to person.

As the symptoms and needs of the person you’re caring for change, your role as a caregiver may also change. But there are some things you can do consistently to help, no matter where in the cycle the person’s MM may be:

• Understand how the disease can impact the person with MM physically. Below are the most common medical issues associated with MM and the medicines for it. If the person you’re caring for experiences any of these symptoms, contact his or her healthcare team.

• Keep track of all the medicines the person with MM is taking. Medicines used to treat MM can also cause changes to the person’s health.
• Keep an open dialogue with the person with MM. Make sure the person is comfortable talking with you about how he or she is feeling.
• Keep a running list of changes in health and other issues. Bring this list to each doctor appointment to discuss anything of concern. It’s important to be open and honest about any changes the person is going through, so the healthcare team can provide the best care and medicine for MM.
• Talk with the person’s healthcare team about the options available at each stage in the journey. That way, you can stay informed and educated about his or her care and become an active participant in making decisions.
• Help the person with MM stay as healthy as possible. It’s important to encourage people with MM to eat and drink right, rest, and reduce physical activity. To reduce the risk of infection, people with MM should limit contact with sick people and maintain personal hygiene. As MM progresses, you will also likely need to help with more everyday tasks.

This article is brought to you by Janssen.

The post Caring for Someone With Multiple Myeloma appeared first on Black Health Matters.

In people with Multiple myeloma, however, cancerous plasma cells grow uncontrolled, taking up real estate normally occupied by healthy blood cells. This proliferation of cancer cells produce abnormal proteins that lead to complications, including compromised kidney function, brittle bones, anemia, neuropathy, fatigue, fractures and even death.

If you don’t know much about multiple myeloma, it’s because it accounts for only 2 percent of all cancers. But as you may expect, multiple myeloma, like many other diseases, hits Black folks harder. It is the most common blood cancer for us, and we account for about 20 percent of all patients living with this disease. We are often younger than our white counterparts at diagnosis, and we are two to three times more likely to die of the disease.

So why do we bear the brunt of this cancer? Though experts don’t know for sure—there’s some thought that African Americans may have a genetic predisposition to the mutations that cause multiple myeloma—what is clear is that we typically present at a later stage of the disease.

Multiple myeloma doesn’t “happen completely brand new,” said Neha Korde, M.D., an assistant professor in the multiple myeloma department of the Memorial Sloan Kettering Cancer Center at the recent 2021 Black Health Matters Winter Summit.

In fact, this cancer is always preceded by a more benign condition, Monoclonal gammopathy of undetermined significance, or MGUS. People diagnosed with MGUS are usually just watched by doctors as the condition doesn’t cause the organ damage multiple myeloma does.

This is “important,” Korde said, “because it implies it can be caught early and tracked along the way.” If the disease is caught earlier, in the MGUS stage, the outcome is better than if someone is diagnosed with full-blown multiple myeloma.

Key, Korde said, is education. “Multiple myeloma is considered incurable, but it’s very treatable. Therapy takes a multidisciplinary approach that begins and ends with knowledge.”

For more information on multiple myeloma and the treatment options available, visit cancer.org.

This article is brought to you by Janssen.

The post Multiple Myeloma – More Common in Blacks appeared first on Black Health Matters.

At the recent Black Health Matters Winter Summit, Dr. Neha Korde of the Memorial Sloan Kettering Cancer Center, discussed Multiple myeloma and the 4 pillars of treatment available.

Today, Multiple myeloma is considered incurable, but it’s very treatable” says Korde. That multidisciplinary therapy approach is built from what Korde calls, the Four Pillars of Treatment.

1. Patient advocacy. Community forums, resources and peer groups are important to getting knowledge out.

2. Access to care. Another reason African Americans fare worse with Multiple myeloma is due to delays in treatment. “Thirty-one percent of African American patients underutilize injection therapies,” Korde said. “This may be because of a lack of access to care.” but when we start therapy earlier, our survival outcomes are often better than that of other races with Multiple myeloma.

For this reason, Korde suggests patients find centers with novel treatments. “Start with your local oncologist,” she said. She also recommends seeking academic centers doing research and organizations such as the International Myeloma Foundation and the Multiple Myeloma Research Foundation, which can help patients find experts. “It takes a village to treat myeloma patients,” she said. “High level expert care is really going to help you.”

3. State of the art diagnostics. Technology has improved detection methods, Korde said. “Multiple myeloma survival outcomes are improving,” she said. “ [with early diagnosis…] Patients are living a lot longer compared to just a couple of decades ago.”

4. Immunotherapy. “We’re using immunotherapies in clinical trials, which is another reason why I recommend patients seek care in a research center,” Korde said, though she realizes black patients are underrepresented in clinical trials. Research shows only about 4 percent to 6 percent of clinical trial participants are African Americans. “Trials are necessary for scientific discovery and research. They really help your doctors help you.”

Next Steps in Multiple Myeloma Therapies
“It’s an exciting time for Multiple myeloma treatment,” Korde said. “We’re looking at CAR-T cells and how can we engage the immune system to attack multiple myeloma.”

If someone has received an MGUS or Multiple myeloma diagnosis, Korde had this advice: “Keep asking questions of your doctors. Empower yourself with knowledge.”

This article is brought to you by Janssen.

The post New Multiple Myeloma Treatment Options Provide Hope appeared first on Black Health Matters.

Unfortunately, the symptoms including bone pain, mental fogginess, excessive thirst may develop slowly over time and don’t usually appear until the disease reaches an advanced stage. In some cases, the disease is only discovered during a routine blood test or a test to diagnose another condition.

So how do you know you’re at risk? According to the American Cancer Society, there are a few factors that may increase your chances of developing Multiple myeloma. They include the following:

AGE
The risk of Multiple myeloma increases as people age. Less than 1 percent of cases are diagnosed in those younger than 35. Most people diagnosed with Multiple myeloma are 65 or older.

GENDER
Men are a little bit more likely to develop this form of cancer than women.

RACE
Multiple myeloma is twice as common—and twice as deadly—in Black Americans. Additionally, the incidence of conditions associated with the development of myeloma (including monoclonal gammopathy of undetermined significance or MGUS) is high in Black Americans.

OBESITY
An American Cancer Society study found being overweight or obese increases the chances of developing myeloma. African Americans, especially women, carry the biggest obesity burden of all the populations in this country.

FAMILY HISTORY
Multiple myeloma appears to run in some families. People who have a parent or sibling with the disease are four times more likely to get it. That said, most patients have no relatives with the disease, so this accounts for a few cases.

RADIATION
Exposure to radiation (even at lower levels) may also increase the risk of Multiple myeloma, though experts say this accounts for only a small number of cases.

OTHER PLASMA CELL DISEASES
Many people with monoclonal gammopathy of undetermined significance (MGUS) or solitary plasmacytoma will eventually develop Multiple myeloma.

Now that you know the risks, there is a silver lining if you do develop the disease. People with Multiple myeloma are living longer than ever before thanks to new treatments including stem cell transplant and gene therapy.

This article is brought to you by Janssen.

The post Are You at Risk for Multiple Myeloma? appeared first on Black Health Matters.

Learn as much as you can about Multiple myeloma. Making informed decisions about your care can make you feel more in control of the situation. Ask your doctor about available treatment options and the benefits and risks of each. You can also find additional information at your local library or online, such as on the National Cancer Institute website.

Maintain a strong support system. Let your family and friends know you need emotional support. Consider joining a support group for people coping with cancer, where you can learn about strategies others have used to successfully cope with sadness and anxiety. You might even make new friends, which could have a positive impact on your well-being.

Ask your doctor if he or she can recommend cancer support groups in your area. Consider online support groups as well including the following:

• American Cancer Society’s Cancer Survivors Network: Connect with other people with cancer and their families through discussion boards, chat rooms and private CSN email addresses.
• International Myeloma Foundation’s Smart Patients Myeloma Community: Learn about available treatments and clinical trials for Multiple myeloma. Learn about the experiences of other people living with the condition, as well as the experiences of their families and caregivers.
• Cancer Hope Network: Talk with a cancer survivor. Talk with or engage in a live chat with a cancer survivor who’s faced and recovered from a situation similar to yours.
• You can find more support groups by visiting the International Myeloma Foundation website.

Take care of yourself. Cancer treatment can put a lot of stress on your mind and body, so it’s important to minimize stress in other areas of your life. Prevent or reduce stress by adopting or continuing to practice healthy habits:

• Eat a healthy diet.
• Get lots of rest.
• Take part in activities you enjoy.
• Spend time with people you care about.
• Exercise. It can raise your energy level and help you feel better. Make sure to talk to your doctor before you begin an exercise program.

What if emotional side effects persist? If your sadness doesn’t fade or worsens over time or if it starts to get in the way of your daily life, you may be experiencing depression, which may require treatment. Tell your doctor if you have any of the following symptoms persisting most of the day, nearly every day:

• Feeling sad, empty or worthless
• Feeling irritable, frustrated or angry over small matters
• Loss of interest or pleasure in activities you used to enjoy
• Difficulty falling or staying asleep, or sleeping too much
• Lack of energy even for small tasks
• Excessive worrying that may be accompanied by compulsive behaviors, such as pacing and hand-wringing
• Slowed ability to think, speak or move your body
• Thinking obsessively about past failures, or blaming yourself for things you couldn’t control
• Trouble concentrating, making decisions and remembering things
• Thoughts of suicide
• Headaches, back pain or other physical problems with no physical cause

If you have depression, your doctor might prescribe medication to help manage your symptoms. He or she may also suggest you see a therapist for additional support.

This article is brought to you by Janssen.

The post How to Cope With a Multiple Myeloma Diagnosis appeared first on Black Health Matters.

These cells grow out of control, weakening the bone around the marrow, leading to bone lesions that may cause pain or fractures of the damaged bones. Over time, these cancerous cells can spill out of the bone marrow, traveling to other parts of the body and damaging organs. The disease can cause anemia and kidney problems.

Scientists don’t know what causes plasma cells to become malignant, but research suggests several possible culprits, including a genetic abnormality; environmental exposure to herbicides, insecticides, benzene, hair dyes and radiation; inflammation or infection. You’re also at an increased risk of developing multiple myeloma if you are 65 or older, male, African American and overweight or obese. Your chances go up even more if you have a family history of the disease.
People with multiple myeloma may not have any symptoms at first. As the disease becomes more advanced, however, they may experience weakness due to anemia, bone pain and damage to the kidneys. Other symptoms of multiple myeloma include:

Anemia
Bleeding
Loss of appetite
Nerve damage
Skin lesions
Enlarged tongue
Bone tenderness or pain
Weakness and fatigue
Shortness of breath
Infections
Bone fractures
Weight loss
Kidney failure

There is no cure for the disease, but current treatments are more effective and less toxic than they were in the past. Therapy may reduce the occurrence and severity of symptoms and prolong life. Ultimately, the prognosis for multiple myeloma varies depending on the stage at diagnosis and response to therapy.

This article is brought to you by Janssen.

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It’s another week, and there’s more evidence that we need to get up out of our seats. A new study reveals women who sit too much have an increased risk of cancer.

A growing database of research from the past couple of years shows too much sitting carries risk above just lack of exercise. Most notably, studies have looked at the connections between excess sitting and heart disease, diabetes, stroke and obesity.

The new study included 184,000 adults aged 50 to 70, who were enrolled in American Cancer Society Cancer Prevention Study II Nutrition Cohort. Participants answered a questionnaire about how many hours they work, exercise, perform household activities and sit for leisure (sitting to watch TV, reading or playing with electronic gadgets). Researchers followed the 69,260 men for about 13 years and the 77,462 women for about 16 and compared their behaviors to their health.

For women, the results are distressing. Those who sat more than six hours a day had a 10 percent greater risk of getting any cancer compared to ladies who sat for less than three hours. Those who sat for more than six hours a day had a 65 percent increased risk for multiple myeloma, a 43 percent higher risk for ovarian cancer and a 10 percent increased risk for invasive breast cancer than their peers who sat for three hours or less each day.

Too much sitting can impact metabolism and may also increase body fat and estrogen levels, which can lead to common female cancers, according to experts.

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How Multiple Myeloma Starts

Multiple Myeloma is cancer of a type of immune cell called a plasma cell. The plasma cell is a type of white blood cell that is made in your bone marrow (the tissue inside your bones). These cells produce antibodies that help your body fight infection, disease, and even cancer.

But when you have Multiple Myeloma (MM), changes to your cells’ genetic makeup cause your normal plasma cells to transform into malignant (or cancerous) myeloma cells. These malignant myeloma cells then connect with other cells in your bone marrow, giving them a foundation to grow even more myeloma cells.

How Multiple Myeloma Continues Over Time

Once myeloma cells begin to grow in your bone marrow, a continuous cycle of growth begins. There are 2 different, but equally important, parts of the cycle of MM:

1. Myeloma cells grow and multiply within your bone marrow. They overcrowd the tissue space, leaving no room for your healthy immune cells to grow. Myeloma cells also release chemicals (called cytokines) that can stop healthy immune cells from working.
2. When your healthy immune cells can’t grow, they can’t fight off diseases, including MM. Your weakened immune system then allows more myeloma cells to grow.

This cycle keeps going around and around — and this is what makes MM a chronic and progressive disease that requires a long-term plan to help manage it.

How Multiple Myeloma Can Affect Your Health

Untreated MM can cause a range of harmful effects to your body. This is why it’s so important to work with your healthcare team to help manage the disease. If myeloma cells continue to grow in your bone marrow, they can cause symptoms commonly referred to as CRAB (Calcium, Renal, Anemia, Bone) and infection:

• Calcium in your blood: Myeloma cells connect with other cells in your bone marrow, which can eventually lead to extra calcium in your blood. This puts a strain on your kidneys, which are responsible for filtering your blood, and can lead to other symptoms such as fatigue (extreme tiredness), loss of appetite, increased thirst and/or urination, restlessness, nausea and vomiting, and even trouble thinking or confusion.
• Renal (or kidney) problems: In addition to the problems caused by extra calcium in your blood, myeloma cells also release a type of protein (called M-protein) that can damage your kidneys. You need your kidneys to help prevent waste and extra fluids from building up in your body, to keep levels of electrolytes (such as sodium, potassium, and phosphate) stable, and to make hormones that help keep your bones strong and your blood pressure in check.
• Anemia: With less space in your bone marrow for healthy red blood cells, you have a higher risk of anemia. This means that your blood cannot carry enough oxygen to the rest of your body. Anemia can cause symptoms such as fatigue, headache, shortness of breath, and feelings of being very cold, dizzy, or irritable.
• Bone problems: Myeloma can cause bone destruction, which can result in bone pain. This damage occurs as MM interferes with 2 ways that bones normally develop: reducing the activity of osteoblasts, which usually help build new bone; and promoting the activity of osteoclasts, which usually break down old bone.
• Infection caused by a weakened immune system: When myeloma cells crowd out the other cells in your body, you are left at higher risk of infection and disease. A weakened immune system also allows more myeloma cells to grow.

If you have questions about multiple myeloma, please see your healthcare professional.   For additional articles on multiple myeloma see: https://blackhealthmatters.com//?s=multiple+myeloma.

This excerpt was taken from Myeloma Central.  For additional information on multiple myeloma go to www.myelomacentral.com.

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Brown then delved into how scientific research aimed at developing better treatments for specific diseases is being done all over the country every day, but she pulled no punches about the lack of inclusion of African Americans in this research.

“They say it’s all in the genes,” Brown said. “That’s very true. What’s in the genes is something about the type of cancer that African American men and women get is different than the type they have in Sweden. Prostate cancer, breast cancer, colon cancer, uterine cancer, multiple myeloma—these are the cancers with huge disparities. We need men and women of African descent to participate in trials.”

Brown also outlined how ageism can play a part in keeping us out of medical research.

“Government agencies say women after age 65 with adequate screenings for the previous five years, no longer need Pap smears,” Brown said. “This isn’t true. The death rates start increasing exponentially after age 65. Many of us are sexually active after age 65. If you have a cervix after age 65, you still need to get screened.”

But the biggest indicator of cancer diagnosis and survival? Poverty. It’s even bigger than race, Brown said. “If you have Medicaid, you do worse with breast cancer no matter what color you are, even worse than people with no insurance.

“Medicare Advantage plans do not let you go to NYU or Sloan Kettering. They want you to go where the care is cheapest. You don’t want cheap cancer care. You want the best cancer care.”

Where is that care? According to Brown, most cancer centers have programs dedicated to eliminating disparities. It is at these centers where cutting-edge scientific study is done. And it’s critical for black folks to be part of that research.

“You’re going to get the best, latest advances and better care,” she said. “You can help get rid of some of these disparities, particularly if you’re a person of color. Clinical research plus underserved populations equals cancer health equity.”

So why are so few of us taking part in clinical trials? The easy answer is our fear of research borne out of medical experimentation—think: Tuskegee Experiment and Henrietta Lacks. But the truth is that most people aren’t old enough to remember this mistreatment.

Brown suggested the culprit is deeper than that.

Some of our reluctance centers around cost. We worry we won’t be able to afford the treatment. “Medicare does cover all of the costs associated with participating in a clinical trials,” she said, giving credit for this to legislation passed during Bill Clinton’s administration. “Medicaid does not. But there’s a bill in Congress right now to make this mandatory for Medicaid. There is no study in New York City where someone should not be given access to a clinical trial because of costs.”

Another roadblock to minority involvement in clinical trials comes from the medical profession itself.

“A lot of oncologists assume poor patients, homeless patients, old patients, or patients of color won’t be able to deal with this clinical trial, so they think, ‘I’m not going to tell them about it,’” Brown said. “We have to get past that.

Sloan Kettering works hard to avoid those assumptions. It’s not the only center actively seeking people of color for research, but it’s the place Brown knows best. “We are very aggressive about informing patients about research and clinical trials,” she said.

Today’s cancer treatment is all about precision medicine. This is where a test tells each patient what their particular cancer looks like from a DNA standpoint.

“We learn a way to manipulate this cancer by taking your cancer and your blood and mapping the genome. We can target the mutations in the cancer genome,” Brown said. “New drugs are being developed every day. How? By clinical trials. Participating in a clinical trial is the best way for people of color affected by cancer to level the playing field.”

Read about the 3rd Black Health Matters Summit Recap here: https://blackhealthmatters.com/summitsouth/recap2019/

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Eight additional types of cancer are now linked to the obesity epidemic in this country: gall bladder, liver, meningioma, multiple myeloma, ovary, pancreas, stomach and thyroid cancers.

The findings are based on an analysis of more than 1,000 studies of excess weight and cancer risk analyzed by the World Health Organization’s France-based International Agency for Cancer on Research.

“The burden of cancer due to being overweight or obese is more extensive than what has been assumed,” said Graham Colditz, a cancer prevention expert at the School of Medicine at Washington University in St. Louis. “Many of the newly identified cancers linked to excess weight haven’t been on people’s radar screens as having a weight component.”

It is estimated that one-third of adults and children in the United States are too heavy, and researchers say limiting weight gain could help reduce the risk of these cancers.

This same group of cancer researchers found sufficient evidence linking excess weight to higher risks of cancers of the colon, esophagus, kidney, breast and uterus in an different study from last decade.

“Lifestyle factors such as eating a healthy diet, maintaining a healthy weight and exercising, in addition to not smoking, can have a significant impact on reducing cancer risk,” Colditz said. “Public health efforts to combat cancer should focus on these things that people have some control over. But losing weight is hard for many people. Rather than getting discouraged and giving up, those struggling to take off weight could instead focus on avoiding more weight gain.”

The reasons why being overweight or obese can increase cancer risk are many, according to the researchers. Excess fat leads to an overproduction of estrogen, testosterone and insulin, and promotes inflammation, all of which can drive cancer growth.

“Significant numbers of the U.S. and the world’s population are overweight,” Colditz said. “This is another wake-up call. It’s time to take our health and our diets seriously.”

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Health disparities in cancer exist based on race and ethnicity, socioeconomic status and age.
For nearly all forms of cancer, including breast, lung, colon, prostate and uterine cancers, black folks do worse.
“On the surface, that’s not fair,” Carol Brown, M.D., Associate Cancer Center Director for Diversity and Outreach at Memorial Sloan Kettering Cancer Center, tells the gathered crowd at the Black Health Matters Summit at Riverside Church in Harlem, New York, on a recent Saturday afternoon. “Why is that happening? Is it because of injustice or discrimination, or is there something about these cancers and how they work in black people that makes them more difficult to treat?”
Dr. Brown has spent nearly the last three decades trying to answer these questions.
Here’s what we know: Clinical research in underserved populations equals cancer health equity. Put simply, clinical trials are a crucial step to finding new and promising ways to improve treatment for cancer. Most medical advances have come as a result of clinical trials.
Yet, less than 3 percent of people with cancer nationwide enroll in clinical trials.
Despite what we know about the Tuskegee experiment from last century, the reasons why we have such low participation in clinical trials are varied:

• Mistrust in the medical community is a small part.
• We lack awareness about many clinical trials.
• We’re uninvited. We don’t participate because we aren’t asked. Often this is because “the doctor assumes we won’t understand, won’t want to participate or are too sick,” Dr. Brown says. In addition, she explains, “doctors are less likely to ask older people and people who aren’t white to participate in a clinical trial.”
• Our cultural beliefs dissuade us from joining a clinical trial.
• We don’t know the eligibility criteria.
• We are uninsured. Here’s a little-known fact: President Bill Clinton required all commercial insurance plans and Medicare to cover clinical trial costs. The downside? Medicaid does not cover these costs.
• Language differences account for some lack of participation.
• Physician awareness is also key. If your doctor doesn’t know about a clinical trial, he or she can’t invite you to participate.

Researchers at Memorial Sloan-Kettering in New York City have been working to overcome these challenges. According to Dr. Brown, 1 out of 3 patients who enter the facility’s doors enroll in a clinical trial.
“We empower our patients and get them access to cutting-edge, life-changing treatments,” she says.
Some therapies being studied right now at Memorial Sloan-Kettering include:

• Breast cancer. Black women have 10 percent lower cure rates. Currently, researchers have one targeted therapy plus hormone therapy clinical trial and four trials for women with the deadly triple-negative breast cancer.
• Colon cancer. Black patients have 8 percent lower cure rates, and the disease occurs 10 years earlier in blacks than in whites. It is also a more aggressive cancer in blacks. Right now there are four targeted therapy trials for this cancer, and one trial is focused on explaining the racial differences.
• Multiple myeloma. This bone marrow cancer happens at two times the rate in blacks as it does in whites, and the age at diagnosis is 10 years younger in black folks. Researchers have three targeted therapy plus steroid trials in the works.

Dr. Brown is a tireless clinical trials advocate. “Participating in cancer clinical trials is the best way to level the playing field for black people affected by cancer,” she says.  “We’re not just talking about the best in terms of care, but access to the best in new therapies, access to new drugs and interventions before they are widely available. If the treatment is a success, you are among the first to benefit. Memorial Sloan-Kettering is leading the way to understanding racial and ethnical differences in cancer, allowing us to disseminate treatments that can end disparities.”
Click here to download Dr. Brown’s Presentation given at the 2018 Black Health Matters Summit.

The post Cancer Clinical Trials 101 appeared first on Black Health Matters.

The post Gene Therapy May Kill Multiple Myeloma appeared first on Black Health Matters.

Cheryl Boyce, a health-care advocate, had heard of multiple myeloma, but the disease was the furthest thing from her mind when she went to have a prescription refilled. She had been having puzzling symptoms: bone pain and “tiredness. It’s not a regular being tired, but a deep, dark tired,” she says. “The kind where you can sleep for days and wake up just as tired as when you went to sleep.”

Boyce mentioned the symptoms to her doctor, and he ran blood tests. She learned she had multiple myeloma and the importance of early intervention. “My multiple myeloma is not curable, but it’s treatable,” she says. “I’ve been in remission for some time, and I lead an active lifestyle.”

With that diagnosis, Boyce became part of a growing community. The National Cancer Institute reports a 1 percent increase each year in incidence of the disease since 1975. Multiple myeloma, a cancer of the bone marrow (and the third most common blood cancer after lymphoma and leukemia), is twice as likely to strike blacks as it is other races and ethnicities. But it is a disease about which the public knows very little.

That’s something Craig Cole, M.D., a hematologist at the University of Michigan Comprehensive Cancer Center in Ann Arbor, Michigan, told Black Health Matters he’s working to change.

Black Health Matters: What is multiple myeloma?

Craig Cole, M.D.: It is a cancer that arises from the bone marrow. The marrow makes all the blood cells and blood plasma. Like any cell in the body, bone marrow cells, specifically the plasma cells, can become cancerous. When it does, that’s called multiple myeloma. Plasma cells almost exclusively go to the bone, causing bone thinning and lesions, including in the spine, arms and legs. There are multiple bones involved, that’s why the multiple.

Why don’t we know more about this disease?

Dr. Cole: Even though it affects African Americans two times as much as Caucasian groups, there hasn’t been a lot of dissemination of knowledge or publicity. That’s in part because in the past we didn’t have very good treatments for multiple myeloma. It’s important to detect this disease early and raise awareness.

What are the risk factors for multiple myeloma?

Dr. Cole: As I mentioned, the incidence in people of African-American decent is twice as high as in Caucasians and other races. It’s a disease of older individuals; children do not get this disease. The average age is about 70. It’s more common in men than women. There’s some thought that long-term low-dose exposure to radiation might contribute. It’s not hereditary, and it doesn’t run in families.

What are the symptoms for this cancer?

Dr. Cole: Usually profound fatigue. Patients can also feel anemic, have shortness of breath. They may have a sallow appearance. They can also have pain—unexpected, sudden pain and discomfort—in the bones.

Why are we more likely to be diagnosed with multiple myeloma than our white counterparts?

Dr. Cole: We don’t have the specifics of why African Americans are more likely to get it. It’s not linked to socio-economic status. It’s likely linked to a genetic cause that is the difference between the races.

Why is it important for the African-American community to know about this disease? And where can they get more information?

Dr. Cole: Empowerment and dissemination of knowledge is critical for this disease. We talked earlier about people not knowing much about this disease. This is how we change that. My Multiple Myeloma has information for patients and caregivers and news about clinical trials.

[Photo: University of Michigan]

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• Your risk of disease progression. Multiple myeloma varies between people. In some, it progresses slowly with few symptoms. In others, it can be more aggressive, progressing quickly and keeping doctors scrambling for the best therapy. The more aggressive the disease, the higher the risk it will progress. Your doctor will analyze a sample of your bone marrow. Depending on which DNA sequences are found in the sample, you’ll be classified as having high, intermediate or standard risk.
• Your suitability for a stem cell transplant. Your doctor also will order tests to determine whether or not you’re a candidate for a stem cell transplant, a procedure to replace your diseased bone marrow with healthy bone marrow. If you’re considered a good candidate, your doctor will discuss the procedure and its risks with you.

How do doctors determine your eligibility for a transplant? They take into account these factors:

• Age. A stem cell transplant usually isn’t recommended if you’re 75 or older. But some older adults in very good health may be offered a reduced-intensity stem cell transplant, which uses lower doses of chemotherapy.
• Other medical conditions. If you have chronic health problems, such as serious heart, kidney, liver or lung disease, you may not be eligible for a stem cell transplant.
• Previous treatments. If you haven’t had a lot of treatment for your multiple myeloma, you have a better chance of responding positively to a stem cell transplant.

If you’re a go for a stem cell transplant, understand that while it won’t cure your disease, it can increase the success of your treatment. The typical approach is:
Initial therapy. If you have a standard risk of your multiple myeloma progressing, your doctor will probably recommend treatment with an initial therapy—a combination of chemotherapy, biological therapy, targeted therapy and corticosteroids—for two to four months. The goal is to reduce the number of cancer cells and ease your symptoms before the transplant.
Stem cell transplant. After initial therapy, stem cells will be harvested from your bone marrow or blood. After enough stem cells are collected and stored, it’s recommended you have the transplant immediately after recovering from the harvesting procedure.
You may be able to delay stem cell transplantation if you have a standard risk for disease progression. But if your risk of progression is intermediate or high, delaying the procedure will likely not be an option.
If you’re not approved for a stem cell transplant, your doctor will choose one or more of the following options:

• Initial therapy. In this case, initial therapy is given for up to a year and isn’t followed by a stem cell transplant. Corticosteroids are often combined with chemotherapy to reduce side effects. And interferon, a hormone-like drug that can help keep the condition in remission after chemo, often is included, too.
• Immunotherapy. When antibodies are used to attack cancer cells, it is called immunotherapy. This is usually reserved for patients who have not had success with other treatments.
• Radiation therapy. In this treatment, a beam is directed from a machine to a bone or other affected part of the body. The beam’s rays kill plasma cells, easing pain and strengthening weakened bone.
• Clinical trials. Since we’re still searching for the best treatment for multiple myeloma, new drugs are being tested in clinical trials. Talk to your doctor about participating in a clinical trial for access to these new therapies.

Some treatments for multiple myeloma may be more suitable than others. Talk with your doctor about what options are best based on the factors that apply to you.

The post Multiple Myeloma: Choosing the Right Treatment appeared first on Black Health Matters.

If you recently found out you have multiple myeloma, or even if you’ve known it for some time, you might be experiencing feelings such as sadness or anxiety. These feelings are normal when you’re faced with a cancer diagnosis. It’s also common to have these feelings during cancer treatment. They likely will fade over time. But until then, you might need strategies to help you cope with these emotional side effects. Consider the following:
Learn as much as you can about multiple myeloma. Making informed decisions about your care can make you feel more in control of the situation. Ask your doctor about available treatment options and the benefits and risks of each. You can also find additional information at your local library or online, such as on the National Cancer Institute website.
Maintain a strong support system. Let your family and friends know you need emotional support. Consider joining a support group for people coping with cancer, where you can learn about strategies others have used to successfully cope with sadness and anxiety. You might even make new friends, which could have a positive impact on your well-being.
Ask your doctor if he or she can recommend cancer support groups in your area. Consider online support groups as well.

• American Cancer Society: Cancer survivors network. Connect with other people with cancer and their families through discussion boards, chat rooms and private CSN email addresses.
• International Myeloma Foundation: Smart patients multiple myeloma community. Learn about available treatments and clinical trials for multiple myeloma. Hear about the experiences of other people living with the condition, as well as the experiences of their families and caregivers.
• Cancer Hope Network: Talk with a cancer survivor. Talk with or engage in a live chat with a cancer survivor who’s faced and recovered from a situation similar to yours.
• You can find more support groups by visiting the International Myeloma Foundation website.

Take care of yourself. Cancer treatment can put a lot of stress on your mind and body, so it’s important to minimize stress in other areas of your life. Prevent or reduce stress by adopting or continuing to practice healthy habits:

• Eat a healthy diet.
• Get lots of rest.
• Take part in activities you enjoy.
• Spend time with people you care about.
• Exercise. Exercise can raise your energy level and help you feel better. Make sure to talk to your doctor before you begin an exercise program.

What if emotional side effects persist? If your sadness doesn’t fade or worsens over time or if it starts to get in the way of your daily life, you may be experiencing depression, which may require treatment. Tell your doctor if you have any of the following symptoms persisting most of the day, nearly every day:

• Feeling sad, empty or worthless
• Feeling irritable, frustrated or angry over small matters
• Loss of interest or pleasure in activities you used to enjoy
• Difficulty falling or staying asleep, or sleeping too much
• Lack of energy even for small tasks
• Excessive worrying that may be accompanied by compulsive behaviors, such as pacing and hand-wringing
• Slowed ability to think, speak or move your body
• Thinking obsessively about past failures, or blaming yourself for things you couldn’t control
• Trouble concentrating, making decisions and remembering things
• Thoughts of suicide
• Headaches, back pain or other physical problems with no physical cause

If you have depression, your doctor might prescribe medication to help manage your symptoms. He or she may also suggest you see a therapist for additional support.

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