Myeloma-Related Questions to Ask After Diagnosis

We spoke with three myeloma experts about myeloma-related questions patients should ask their doctors after a diagnosis.

The treatment landscape for multiple myeloma is changing drastically, with more treatments and drug combinations than ever before.

Like any cancer diagnosis, learning that you have myeloma could be overwhelming. So, we asked hematology experts what patients should ask their clinical care team soon after receiving their diagnosis. Here is what they had to say.

READ MORE: Questions Patients Should Ask After a Cancer Diagnosis

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“‘Where can I learn more or whom can I learn more from?’ … Patients are treated with myeloma for years and because ... there is a disconnect between how [researchers] have written the trials and the standard treatments and how we actually [use] them, it is tremendously important for patients to feel like they can advocate for the plan that makes the most sense for them.

“So practically, in terms of what I would say to ask your oncologist is, ‘What websites do you trust? What patient support groups can I join?’ I think patient support groups for my patients have been tremendously important because they learn from each other. And they come to me and they're like, ‘Oh, what do you think about stopping my dexamethasone or lowering this medication or that?’ Just because the toxicities of myeloma treatment build up over time, and we are really focused on keeping people in remission and so we have an inherent bias as oncologists to overtreat our patients.”

— Dr. Rahul Banerjee, assistant professor in the clinical research division of Fred Hutchinson Cancer Center

Understand Disease Treatments, Statistics

“I would say for a medical oncologist like myself who sees patients with recurrent disease who have difficulties in getting to a cure, I think the most important question that a patient could ask is, ‘How much should I put faith in the statistics and the numbers that the physicians are giving me in terms of predicting my outcome?’ Because I think the more we treat patients, the more patients surprise themselves — and surprise us many times — where they actually beat the expectations. Currently, in the immunotherapy era, I think many patients do beat the expectations. And I'm not saying this just for patients who will beat expectations, but also for patients who do not meet the expectations. And so, how much of these numbers are really relevant in actually predicting the outcome of a single particular patient? I think it is something that is very contentious. I don't know if we can maybe do studies around that area. But I think this is a little bit of a fallacy when you sit in front of a patient and give numbers. Those numbers really may not apply to that patient.”

— Dr. Nabil Saba, professor in the department of hematology and medical oncology, Emory University

“It really depends on what stage of your treatment you're in. There's so much range in terms of the amount of information one individual wants versus another. But I think always asking, ‘What are my options?’ is beneficial. Understanding the breadth of your options, not just what is recommended so that you're getting what they recommend but understanding the alternatives.

“Myeloma is a bit of a chess match. So you have your move now, but you always have to be planning as a physician, what the move is beyond that, and after that, so I think as a patient, understanding what this current move is, which your other options for that move are and what is ahead of that it's just important, especially in a field that's rapidly changing in the way that myeloma has over the past decade.”

— Dr. Elizabeth O’Donnell, director of Early Detection and Prevention at Dana-Farber Cancer Institute and assistant professor of Medicine at Harvard Medical School

"[Patients should ask], ‘Do I really need all these medications?’ For some people, the answer is ‘Yes, absolutely.’ I [say] ‘Look, you have high-risk cytogenetics. I need to keep you on these medications. I'm very concerned otherwise if we don't.’

“As an example, technically the standard for [Revlimid (lenalidomide)] for myeloma is to keep people on treatment forever, [but] in real life, more studies are emerging around MRD-guided discontinuation. But honestly, some people just hate [Revlimid], they're having side effects from it. They're having financial toxicity from it, etc. And I think asking the doctor, ‘Do I need this drug? Can I switch to something different? Can I stop?’ are all really useful questions.

“As oncologists, we don't hear about the side effects they're having, we don't hear about the financial toxicity. We are notoriously poor at asking our patients, "How are you financially doing with this diagnosis?"

— Dr. Rahul Banerjee

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