{"id":65195,"date":"2025-12-23T14:46:41","date_gmt":"2025-12-23T19:46:41","guid":{"rendered":"https:\/\/blackhealthmatters.com\/?p=65195"},"modified":"2025-12-30T17:12:47","modified_gmt":"2025-12-30T22:12:47","slug":"patient-power-insights-from-the-front-lines-of-myeloma","status":"publish","type":"post","link":"https:\/\/blackhealthmatters.com\/patient-power-insights-from-the-front-lines-of-myeloma\/","title":{"rendered":"Patient Power Insights from the Front Lines of Myeloma"},"content":{"rendered":"

Presented By:\u00a0Bristol Myers Squibb\u00a0<\/strong><\/p>\n

Mariana Broussard<\/span>\u00a0<\/span><\/p>\n

Associate Director, Global Patient Advocacy, Multiple Myeloma\u00a0<\/em><\/p>\n

Dr. Brian Englehart, MD, MSCI<\/span>\u00a0<\/span><\/p>\n

Multiple Myeloma Medical Engagement Lead\u00a0<\/span>\u00a0<\/span><\/p>\n

Robert Pugh<\/span>\u00a0<\/span><\/p>\n

Long-Term Multiple Myeloma Survivor Patient Advocate\u00a0<\/em><\/p>\n

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.\u00a0\u201c I\u00a0do not and did not ever have a history of illnesses of any kind,\u201d he told the audience at the Black Health Matters Fall 2025 Health Summit & Expo in Charlotte, North Carolina.\u00a0<\/span>\u00a0<\/span><\/p>\n

Pugh shared what it was like learning that he was facing multiple\u00a0myeloma. \u201cI was preparing for a race, a 15K, and I\u00a0went in simply\u00a0for an examination,\u201d said Pugh. He wanted to get a jump on the minor pain he was feeling. It\u00a0didn\u2019t\u00a0strike him as\u00a0cause\u00a0for\u00a0serious concern. \u201cAs a runner, you’re accustomed to pain.\u201d His doctor examined his back pain and raised an alarm. \u201cHe 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,\u201d said Pugh. The physician recommended\u00a0additional\u00a0tests and\u00a0ultimately gave\u00a0him a referral.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cI need you to go see this guy,\u201d the doctor told him. Pugh was shocked to\u00a0learn\u00a0the guy was an oncologist.\u00a0<\/span>\u00a0<\/span><\/p>\n

How Common Is Multiple Myeloma\u00a0In\u00a0Black Households?<\/span><\/b>\u00a0<\/span><\/h3>\n

Pugh\u2019s experience was\u00a0not uncommon\u00a0in the Black community. The International Myeloma Foundation\u00a0<\/span>reports<\/span><\/a>\u00a0that \u201cIn the U.S., African Americans are about 14% of the country’s population, but they constitute about 20% of all myeloma patients.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cMultiple myeloma is the second most common blood cancer in the United States,\u201d said Mariana Broussard, Associate Director, Global Patient Advocacy, Multiple Myeloma at Bristol Myers Squibb.\u00a0\u00a0It progresses over\u00a0<\/span>three stages<\/span><\/a>. Treatments are advancing. There have been\u00a0innovations in regimens including stem cell\u00a0transplants\u00a0but there is no cure. She described the way that the\u00a0condition\u00a0disproportionately\u00a0impacts\u00a0the Black community.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cAfrican-American\u00a0patients 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\u00a0African-American\u00a0community,\u201d she continued.\u00a0<\/span>\u00a0<\/span><\/p>\n

How Does Multiple Myeloma Show Up Differently?\u00a0<\/span><\/b>\u00a0<\/span><\/h3>\n

Unlike the dramatic moments people watch on television where a character finds an oversized lump they\u00a0can\u2019t\u00a0ignore, this was not as clear-cut of a process. \u201c’It\u2019s\u00a0disseminated. It is spread throughout your blood and bone marrow, which is unlike solid tumors, which you know\u00a0generally begin\u00a0as a lump or a bump in a solid organ,\u201d explained Dr. Brian Englehart.\u00a0<\/span>\u00a0<\/span><\/p>\n

Multiple myeloma is\u00a0a common form\u00a0of cancer, but Pugh had zero information about the condition when he received his diagnosis. \u201cI had no idea what that was,\u201d he said. \u201cIt just kind of threw me.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

Pugh sprinted towards denial. He refused to believe what he was told initially. \u201cWhen I was diagnosed, I thought they had the wrong person,\u201d he said.\u00a0<\/span>\u00a0<\/span><\/p>\n

According to a 2022 study in the\u00a0<\/span>American Journal of Hematology<\/span><\/a>, \u201cMultiple myeloma accounts for 1% of all cancers and approximately 10% of all hematologic malignancies,\u201d and \u201ceach year over 32,000 new cases are diagnosed in the United States, and almost 13,000 patients die of the disease.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

Diagnosing Multiple Myeloma Can Be Difficult<\/span><\/b>\u00a0<\/span><\/h3>\n

Englehart noted that Pugh\u2019s experience of a simple annoyance symbolizing something more serious was\u00a0not uncommon. \u201cHis course was kind of very typical for many patients with multiple myeloma,\u201d he said. \u201cPatients can often present with pain, and it’s in the back, it can be in the hip or ribs.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

A person\u2019s lifestyle, like Pugh being a runner, or their stage of\u00a0life\u00a0can\u00a0impact\u00a0how these symptoms are masked. \u201cThe other thing is we all, especially as we get older, we\u00a0all experience pain,\u201d said Englehart. He taught the room the differences in pain that might\u00a0accompany\u00a0a serious illness, and not just a stressful day.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cThere 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,\u201d he continued. There are other symptoms that can be overlooked as well. \u201cPatients can also have\u00a0fatigue from anemia. Recurrent infections are also\u00a0fairly common\u00a0too, so multiple myeloma is a very tricky disease.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

Myeloma Can Exist Without Symptoms\u00a0<\/span><\/b>\u00a0<\/span><\/h3>\n

He explained that firming up a diagnosis can be difficult due to the protocol. \u201cThere is\u00a0no one\u00a0test generally used for diagnosis,\u201d Englehart added. \u201cIt’s really a series of tests.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cSome patients with myeloma are asymptomatic. They have no symptoms whatsoever and are diagnosed incidentally,\u201d said Englehart. \u201cYou go for a routine checkup, and your doctor finds out that\u00a0you’re\u00a0more\u00a0anemic\u00a0or your kidneys\u00a0aren’t\u00a0functioning normally. Sometimes that can lead to a diagnosis.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

Routine screenings can help patients\u00a0learn\u00a0their status and begin treatment sooner. Accessing these can be difficult for those without the necessary resources. \u201cEconomic and social characteristics can play a large role in the diagnosis, treatment, and management of multiple myeloma,\u201d said Englehart. \u201cIf healthcare access is limited, symptoms may go undiagnosed or untreated.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

Treating Multiple Myeloma Requires Collaboration\u00a0<\/span><\/b>\u00a0<\/span><\/h3>\n

The trickiness of multiple myeloma is best fought as a unit.\u00a0Patients\u00a0have to\u00a0advocate for themselves and coordinate with different health care providers to improve their outcomes.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cIt really takes a team and a village to help treat and care for patients with multiple myeloma,\u201d said Englehart. \u201cPatients 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.\u00a0<\/span>\u00a0<\/span><\/p>\n

Multiple Myeloma Can Impact One\u2019s Mental Health\u00a0<\/span><\/b>\u00a0<\/span><\/h3>\n

It can be helpful for one\u2019s healthcare team to include a mental health professional as well. A 2025 article in the Journal of Clinical Lymphoma Myeloma and Leukemia\u00a0<\/span>identifies\u00a0<\/span><\/a>mental health considerations as a gap in the treatment protocols for multiple myeloma patients. It found that \u201cPeople 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.\u201d Pugh confirmed the mental health challenges. \u201cI was the mover and the shaker. I\u00a0wasn’t\u00a0moving or shaking. So, I found myself avoiding people, you know? Because\u00a0you’re\u00a0just not who you thought you were.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

His trust and relationships with his providers helped him work through those challenges. They helped him\u00a0establish\u00a0a routine for a maintenance phase to keep his health in mind during his\u00a0day-to-day life. It would look different, but he could make it look the best possible with proper intervention.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cMyeloma is not something that that comes you take care of it, and it’s over,\u201d he\u00a0acknowledged\u00a0<\/span>\u00a0<\/span><\/p>\n

Pugh advised those recently diagnosed to take the advice they are given to\u00a0heart\u00a0to pursue the best health they can and define their own maintenance phase routine.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cYou have to take ownership\u00a0for\u00a0what you’re being told,\u201d said Pugh.\u00a0<\/span>\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

Presented By:\u00a0Bristol Myers Squibb\u00a0 Mariana Broussard\u00a0 Associate Director, Global Patient Advocacy, Multiple Myeloma\u00a0 Dr. Brian Englehart, MD, MSCI\u00a0 Multiple Myeloma Medical Engagement Lead\u00a0\u00a0 Robert Pugh\u00a0 Long-Term Multiple Myeloma Survivor Patient […]<\/p>\n","protected":false},"author":21,"featured_media":65206,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"video","meta":{"footnotes":""},"categories":[1957,6579],"tags":[5452,6790,147,6739,3778,1428,3389,6635],"class_list":["post-65195","post","type-post","status-publish","format-video","has-post-thumbnail","category-health","category-multiple-myeloma","tag-black-myeloma-health","tag-charlotte-summit-2025","tag-clinical-trials","tag-main-video","tag-mulitple-myeloma-clinical-trials","tag-multiple-myeloma","tag-myeloma","tag-noads","post_format-post-format-video"],"yoast_head":"\nPatient Power Insights from the Front Lines of Myeloma - Black Health Matters<\/title>\n<meta name=\"description\" content=\"Multiple Myeloma. 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