Multiple myeloma can manifest in myriad ways. The first sign may be a bone fracture, kidney issues, or unusual blood test results. This blood cancer begins in the white plasma cells and can affect your body’s ability to produce healthy blood cells and fight infections, preventing the immune system from successful operation. These cancerous myeloma cells proliferate in the bone marrow, typically causing fractures, lesions, and bone damage.
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 Medical’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!.
