Who knew? Defining a “cure” for multiple myeloma may be as difficult as actually achieving it! Watch this short Patient Power video and see if you can figure it out…
My friend, Andrew Schorr, does such a good job with these video interviews. But in this case, I think we needed more. Dr. Craig Hofmeister and Sagar Lonial explain their optimism for a myeloma cure in the near future. Or do they?
Yes, As Dr. Lonial describes, we are close to “curing” a 75 year old, newly diagnosed multiple myeloma patient. Doctors will be able to pump them full of enough drugs to keep him/her alive until they die from something else at age 84. My younger readers would argue THAT’S NOT A CURE!
I recently heard from a long-lived survivor that is developing soft tissue tumors after years of treatment. Tumors like these don’t respond well to drugs like Velcade or Revlimid, since both are designed to attack myeloma in the bone marrow.
No problem, right? Kyprolis or POMALYST (pomalidomide) will save the day, right? WRONG! Like Velcade, Kyprolis is a proteasome inhibitor. And like Revlimid, POMALYST is an IMiD. MLN9708? Nope. A proteasome inhibitor. Hope drug companies are working hard to help him and his soft tissue complications. I will do some checking, but don’t hold your breath!
For me, this highlights the flaw in the “cure” argument. Dr. Barlogie at UAMS says if low risk patients that achieve CR after five years of grueling treatment for at least 3 years are cured. So be it! Even if that’s true–and I’m skeptical–that is a very small subset of patients. What about everyone else?
I have written from time to time that I don’t think curing 10-15% of patients is a “cure.” Neither is treating a 75 year old man or woman long enough for them to die from something else that may or may not be related to the toll all of those meds have taken on their bodies over the years.
Hematologists are making commendable progress to help keep leukemia, lymphoma and multiple myeloma patients (Like me!) alive for months or even years longer than just a few years ago; the best record in all of oncology.
But what about our brothers and sisters with amyloidosis and MDS? More and more of us will be developing AML from exposure to years of treatment. What about that? Or readers like the one I mentioned above whose myeloma has morphed into something no one knows how to deal with?
So much work and so little time–especially if you are living on borrowed myeloma time. Wasn’t that a country song? You remember, Don Williams sang it:
“Living on myeloma time, living on borrowed myeloma time. I left Oklahoma riding in a Pontiac, Just about to loose my mind. On my way to California, where the people all live so fine. Because they were young, rich, lucky and stayed in CR after camping-out in Arkansas for five years, living on myeloma time….”
Getting punchy on a dex day! Sometimes all you can do is laugh. I think I’m ready for the weekend!
Feel good and keep smiling! Pat