We spoke with three myeloma specialists about myeloma-related questions sufferers ought to ask their medical doctors after a prognosis.
The remedy panorama for a number of myeloma is altering drastically, with extra therapies and drug combos than ever earlier than.
Like every most cancers prognosis, studying that you’ve myeloma might be overwhelming. So, we requested hematology specialists what sufferers ought to ask their scientific care crew quickly after receiving their prognosis. Here’s what they needed to say.
READ MORE: Questions Sufferers Ought to Ask After a Most cancers Prognosis
Discover Respected Sources for Myeloma Data
“‘The place can I be taught extra or whom can I be taught extra from?’ … Sufferers are handled with myeloma for years and since … there’s a disconnect between how [researchers] have written the trials and the usual therapies and the way we really [use] them, it’s tremendously vital for sufferers to really feel like they will advocate for the plan that makes probably the most sense for them.
“So virtually, by way of what I’d say to ask your oncologist is, ‘What web sites do you belief? What affected person help teams can I be a part of?’ I feel affected person help teams for my sufferers have been tremendously vital as a result of they be taught from one another. And so they come to me and so they’re like, ‘Oh, what do you consider upping my dexamethasone or reducing this medicine or that?’ Simply because the toxicities of myeloma remedy construct up over time, and we’re actually centered on maintaining folks in remission and so we now have an inherent bias as oncologists to overtreat our sufferers.”
— Dr. Rahul Banerjee, assistant professor within the scientific analysis division of Fred Hutchinson Most cancers Middle
Perceive Illness Remedies, Statistics
“I’d say for a medical oncologist like myself who sees sufferers with recurrent illness who’ve difficulties in attending to a treatment, I feel crucial query {that a} affected person may ask is, ‘How a lot ought to I put religion within the statistics and the numbers that the physicians are giving me by way of predicting my final result?’ As a result of I feel the extra we deal with sufferers, the extra sufferers shock themselves — and shock us many occasions — the place they really beat the expectations. Presently, within the immunotherapy period, I feel many sufferers do beat the expectations. And I am not saying this only for sufferers who will beat expectations, but in addition for sufferers who don’t meet the expectations. And so, how a lot of those numbers are actually related in really predicting the end result of a single specific affected person? I feel it’s one thing that may be very contentious. I do not know if we will possibly do research round that space. However I feel it is a little little bit of a fallacy while you sit in entrance of a affected person and provides numbers. These numbers actually might not apply to that affected person.”
— Dr. Nabil Saba, professor within the division of hematology and medical oncology, Emory College
“It actually is determined by what stage of your remedy you are in. There’s a lot vary by way of the quantity of data one particular person desires versus one other. However I feel at all times asking, ‘What are my choices?’ is useful. Understanding the breadth of your choices, not simply what’s really helpful so that you simply’re getting what they advocate however understanding the options.
“Myeloma is a little bit of a chess match. So you might have your transfer now, however you at all times must be planning as a doctor, what the transfer is past that, and after that, so I feel as a affected person, understanding what this present transfer is, which your different choices for that transfer are and what’s forward of that it is simply vital, particularly in a area that is quickly altering in the way in which that myeloma has over the previous decade.”
— Dr. Elizabeth O’Donnell, director of Early Detection and Prevention at Dana-Farber Most cancers Institute and assistant professor of Medication at Harvard Medical Faculty
“[Patients should ask], ‘Do I actually need all these medicines?’ For some folks, the reply is ‘Sure, completely.’ I [say] ‘Look, you might have high-risk cytogenetics. I must hold you on these medicines. I am very involved in any other case if we do not.’
“For example, technically the usual for [Revlimid (lenalidomide)] for myeloma is to maintain folks on remedy without end, [but] in actual life, extra research are rising round MRD-guided discontinuation. However actually, some folks simply hate [Revlimid], they’re having uncomfortable side effects from it. They’re having monetary toxicity from it, and many others. And I feel asking the physician, ‘Do I want this drug? Can I swap to one thing totally different? Can I cease?’ are all actually helpful questions.
“As oncologists, we do not hear in regards to the uncomfortable side effects they’re having, we do not hear in regards to the monetary toxicity. We’re notoriously poor at asking our sufferers, “How are you financially doing with this prognosis?”
— Dr. Rahul Banerjee
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