Guidance for the newly diagnosed on making myeloma treatment decisions
Patients have a lot to consider, but there's research to help
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What do the San Diego Comic-Con and multiple myeloma have in common?
Does that sound like a very strange question? Am I still stuck in comic-con mode?
Perhaps, but bear with me here. Comic-con may be my ultimate fangirl experience, but it’s also a major exercise in decision-making. Should I go to this event or that one? Should I try to get into the hallowed Hall H — the site of blockbuster announcements and surprise screenings — and pay a toll in lost sleep, potential sunburn, and an aching body? Or do I skip that to take in other panels? Shop the exhibit hall (and probably spend too much) or leave the convention center to visit some of the off-site activities that will cost me only time?
Decisions, decisions, decisions.
That is the point in common: Living with myeloma means many decisions. Once upon a time, patients just did whatever the doctor told them to do. That’s no longer the case. Shared decision-making has become a major theme of patient conferences and even the subject of academic research.
Of course, patients face choices far more serious than my admittedly trivial comic-con decisions, with more fateful consequences than a case of FOMO (fear of missing out).
The first decision
There aren’t many choices at diagnosis. For me, back in 2019, there were two options: Revlimid (lenalidomide), Velcade (bortezomib), and dexamethasone; or Cytoxan (cyclophosphamide), Velcade, and dexamethasone. My doctor chose the latter because I had some kidney damage when I was diagnosed.
I didn’t face a decision about my treatment until I met my specialist, who recommended a stem cell transplant (SCT). That was, and still is, considered the standard of care for myeloma. It seemed like an easy choice at the time.
It wasn’t until much later that I saw debate among some patients and even some doctors about SCT. The argument I’ve often seen is this: Because SCT only improves progression-free survival but not overall survival, it isn’t worth the discomfort or risks of serious infection and secondary cancer associated with the high-dose of melphalan that is given in the process.
Understandably, that argument causes a lot of people to pause. And while the International Myeloma Foundation (IMF) says SCT is considered the standard of care for newly diagnosed patients who are eligible, it also says “the final decision is yours” and recommends getting a second opinion, because many factors are involved.
My “easy choice” is not easy for everyone.
Another decision made easier
A few weeks ago, some new research came out about maintenance therapy to keep a patient in remission. This has been debated for years, too. My former doctor was in the “Revlimid maintenance forever” camp. Other doctors believe it should be stopped after two years.
The two-year camp is the winner in the ENDURANCE trial. That study found that two years of Revlimid maintenance had virtually the same overall survival benefit as continuous therapy, with lower rates of side effects. There is a caveat, though: The patients were considered standard risk and not eligible for SCT.
But still, the study is good news for patients who are weighing their myeloma risk against physical and financial toxicities of this expensive drug.
How do you choose?
I think choices generally come down to risk versus reward, and that formula is very individual. For me, the risks of SCT were worth the reward of close to seven years of remission so far.
Yes, there’s always the worry, “What if I choose wrong?” You’re never alone in making choices, though. Your medical team is there to help you. So are organizations like the IMF and others, with helplines, support groups, and people who can share their experiences.
Just having those choices is a sign of how far we’ve come in only a few decades. It gives me hope for where we’re going next.
P.S. Yes, I did the Hall H line. The “Star Trek” panel was worth it!
Note: Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Cancer News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare cancer.
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