Monday I wrote that, “What makes last Thursday’s news a game changer? Now that we know my myeloma is responding to Velcade and dex alone–like IMiDs–I am more likely to respond to Kyprolis and/or MLN9708, too.”
I went on to add, “With all the news circulating about new drugs, one stark fact remains clear: IMiDs, proteasome inhibitors and high dose melphalan (used just prior to a stem cell transplant) are (so far) the only three ways to achieve remission.
Depending which expert you ask, there are theoretically six or seven pathways doctors might use to attack myeloma. Researchers are feverishly pushing to establish additional therapy options that utilize new pathways with mixed results. If and when they are successful, they may be able to box myeloma in and achieve what I call a chronic cure.”
Great! But until researchers can find the sweet-spot and pin one or more of those other pathways down, many myeloma patients will continue to struggle.
I am aware that some of you feel my writing has taken a dark turn recently. I disagree. I would argue that I’m a realistic optimist. Regardless, let me pause here for a public service announcement:
WARNING! Some of the overall survival (OS) statistics and pragmatic reasoning I’m going to share can be a real downer! If you aren’t into the reality of our myeloma-ridden lot-in-life, it may be best for you to skip to the positive take-away message at the end of today’s post.
The median life expectancy for a multiple myeloma patient that has had one or more stem cell transplants–and has become resistant (refractory) to both Revlimid and Velcade–is eight months. Eight short months!
Now, who knows what effect the introduction of two new, powerful drugs like Pomalyst and Kyprolis might do to these numbers. One would hope they would significantly improve them.
Like most life expectancy/overall survival numbers, medians like these should be taken with a large grain of salt. Kyprolis–at double the FDA approved dose–and Pomalyst each work 40-50% of the time in refractory, heavily pretreated patients. When used with dexamethasone, if one of the drugs works, the fortunate(?) patient can anticipate a longer median life expectancy of 13 months.
And for many patients, these numbers are often “stacked.” In other words, get 13 months from Pomalyst and salvage therapy options beyond that will hopefully allow you to live even longer.
Covering medical conferences like ASH and ASCO every year makes me painfully aware of statistics like these. Sometimes ignorance is bliss!
This twisted perspective started while I was at ASH in San Diego in 2010. I was becoming refractory to Revlimid. I was being bombarded with the latest OS data on pomalidomide. We still weren’t sure Velcade was going to work for me. If not, I was facing the stark reality I might only live a short two years. Trust me, the doctors and researchers that plan these meetings don’t design their presentations with myeloma patients in mind. They aren’t softening things so the data is easier for me to take. The process is fascinating, but sitting through these presentations can be brutal!
Now maybe you can understand why I often share with others that “I look at life in two year increments.” My subconscious has taken those 13 months, added them to the 8 months and rounded-up to 2 years. Simple.
One day at a time. Two years at a time. We all find ways to cope with the uncertainty of living with cancer.
I thought about deleting some of this and keeping things light. But I decided to try and explain my deep-seeded fascination with OS numbers and my mortality.
I apologize if my “keeping it real” has been a bit too raw and difficult to take. But before you email me with examples of patients that have lived longer than eight months after Revlimid and Velcade have stopped working, you can stand-down. I understand these grim statistics are medians, and that half of these patients live longer. And as an otherwise healthy survivor–still in his 50’s–one would hope (I do!) that I would land on the longer-lived side of the equation.
Yet I am also painfully aware that responding to a new therapy is only part of the battle. More than half of myeloma patients die as the result of pneumonia or other infections. Blood clots are also a risk. So are chromosomal changes in one’s myeloma type, allowing low risk, manageable myeloma to become a raging, unstoppable beast.
If I’m able to avoid these dangerous pit-falls, having responded to both an IMiD and proteasome inhibitor bodes well for my future.
The takeaway message is this:
If both an IMiD and proteasome inhibitor has worked for someone in the past, he or she (and me!) have a better than average chance of responding to BOTH Kyprolis and Pomalyst!
But what about Cytoxan, bendamustine, immunotherapy drugs and others? I try and be realistic as I crunch the numbers. But at this point it would be nearly impossible for me not to be optimistic. Squeeze a year or two more out of Velcade, gain an additional year or so from Kyprolis, the same from Pomalyst, string enough of the others together and BAM! Another five or six years seems like a drug-filled walk in the park!
For the first time in almost three years, I can see past the two year barrier. It won’t be easy, but I can envision living an additional three, four, five years or more. Hopefully sharing my story will help you feel that way, too.
The way I see it, there are two different types of hope. The first is blind, based on nothing but possibilities and wishful thinking. Some would call it faith. Nothing wrong with that! Whatever works, right?
But I believe the second type of hope can also be powerful and enduring. Hope based on a solid foundation of facts; things you can touch and feel. This is an age-old argument that I can’t even begin to broach here. But for those of you that need a logical bent in order to feel hopeful, maybe this has helped.
So eat well, exercise regularly, take your meds on time and continue to strive to be a better informed patient. Oh, and keep your fingers crossed and pray that researchers can break-though, developing an effective myeloma therapy that utilizes one of those additional pathways.
Then the sky’s the limit! Can you say “chronic cure?”
Feel good and keep smiling! Pat