I have carefully following patient emails and comments about the FDA’s likely approval of carfilzomib (trade name Kyprolis) later this summer.
Like me, many are pleased and excited about the prospects.
But a surprising number of you are not so enthused. And some are downright angry!
So what gives? Why shouldn’t everyone in the myeloma community be happy to hear that Kyprolis will soon be available for their hem/oncs to prescribe?
A lot depends on how you view the myeloma therapy landscape. For me, the fact that Kyprolis works in more than one out of five patients that are running out of treatment options is a great thing–especially when one considers the fact that pomalidomide and other experimental drugs like elotuzumab and MLN9708 may soon be available to help, too.
Lump them all together and I figure the odds say one or more of these new therapies will work for most of us, extending our lives by many months or even a year or two.
But I’m not here to argue that position, which probably represents how a majority of patients–and most specialists feel.
Instead, I want to help others understand why some members of our community are underwhelmed and/or disappointed with the news.
For the sake of time, let’s not rehash how disappointing it can be that so few patients–between 20 and 30%–are likely to be helped by Kyprolis. Or the fact that using it may only add a few short months to the user’s life. Plus, toss-in the fact that this new drug is bound to be incredibly expensive and will probably leave us feeling lousy while we are using it.
Instead, I would like to us to consider how some might feel “enslaved” by a drug that doesn’t work any better than other available drugs.
Try and remember that a large minority (up to 30%) of us experience side effects from using Revlimid and/or Velcade that are so serious, our doctors will need to delay or even permanently discontinue treatment. For someone like that, treating multiple myeloma as a “chronic” disease is a misnomer–sort of like fools gold.
And a significant sub-set of patients decide to brave serious side effects in return for a few more precious years of life, only to end-up wondering if it was all worth it in the end.
So who can blame someone for not doing cartwheels over the approval of another drug which does little more than postpone the inevitable–and leaves us broke and feeling sick along the way?
An honest and disturbing perspective.
I read comments and emails that ask these questions often: “Why aren’t researchers spending more time and money working on a cure?” “Why don’t researchers pay more attention to our daily quality of life?”
And for me, this next one is puzzling as well: “Why don’t our doctors know more about the risks of using these therapies over long periods of time–something that is happening more and more now that maintenance therapy has become the medical standard of care for myeloma patients? And why aren’t these risks weighed against the gains of long term use?”
The simple, easy answer is that these drugs are too new and there hasn’t been enough time to reliably answer these questions. But I don’t see a lot of “quality of life” research being done involving Velcade, Revlimid, Doxil and Cytoxan. And what about dexamethasone? Any proof that 20 or 30 mg a week doesn’t work just as well at 40 mg?
Kyprolis stats do seem to support a “better quality of life” option. For example, research data shows a reduced risk of peripheral neuropathy among patients using Kyprolis vs Velcade.
So maybe progress is being made?
But I have gotten off-track here. YES! I understand why a myeloma patient or caregiver wouldn’t be that excited about the introduction of Kyprolis. But trust me. When it comes time that they need another salvage therapy option, that view may change FAST!
Feel good and keep smiling! Pat