I’ve “known” Matt for what seems to be a long time. We have spoken by phone and exchanged emails for almost two years. I find his story exceptionally hopeful. Matt’s unusual type of multiple myeloma was unresponsive to therapy combinations that work for most everyone else. Then a breakthrough!
I’ve been trying to get Matt to share details about his myeloma journey for a long time. I’m pleased he finally agreed! I’ll let him tell his own story:
I was diagnosed in May, 2011 at the age of 49. I was plagued by horrible fatigue, daily fevers and night sweats. No bone pain though. I was hospitalized in April of that year because I was so anemic. While in the hospital, a bone marrow biopsy and the CRAB analysis identified and confirmed myeloma. My kidneys were on the verge of failure, although to me they seemed to be working fine. A full body scan showed my bones to be OK.
I started chemo the day after my diagnosis. Velcade and dexamethasone (no Revlimid) through my local hematologist. My goal was to get myself ready for an autologous transplant at the City of Hope. But the chemo had no effect, and my kidney’s worsened, so City of Hope denied my transplant application. After a few months of no improvement, we added thalidomide to the Velcade/dex. Again, two cycles had no effect. My kidneys continued to worsened. After two cycles of thalidomide, we dropped it and replaced it with Doxil. Again with no effect. At this point, my nephrologist wanted me to start dialysis; my creatinine had creeped up to 8. But to me, the kidneys still worked.
All this time, I tried to keep working, albeit only 10 or 15 hours a week when I wasn’t in the hospital. At this point, my primary hematologist suggested I see either Dr. Durie or Dr. Berenson. I’m in the LA area and Berenson had an open appointment, so he is who I saw first (demonstrating luck comes in to play). I did eventually see Dr. Durie for a second opinion. He leaned towards transplant. I harvested my stem cells, but at this time, have no plans to use them. They’re frozen away, perhaps next to Ted Williams head!
I liked Berenson immediately. He said his goal was to have patients live a good quality. Complete response wasn’t necessarily the goal, but a significant enough partial response was. Based on the failure of the other drugs and his/our ruling out a transplant, he suggested we try bendamustine (Trade name Treanda), not a standard myeloma drug. But it had been successful in treating myeloma in Europe and was used to treat lymphoma here in the U.S. So we dropped Doxil, added Bendamustine and Revlimid, which hadn’t been part of any of my previous regimens.
We had immediate positive results by adding bendamustine. My myeloma numbers dropped, as did my creatinine (still no dialysis). After 10 cycles of this, we got my numbers to a point where we could switch to maintenance. Note that we don’t measure my M Spike. Monthly, we look at the 24 hour protein in my urine and then do a UPEP spot catch to get a percent of the total protein that is the bad myeloma produced paraprotein. Here is where I get a bit confused. I think we use the same numbers that are used to get the M Spike, but we don’t do the math and instead go with total protein and the upep %. I’m kappa light chain and that number is a bit helpful just for getting trends, but not really for truly measuring the myeloma. I’m also IGG, but that number isn’t helpful at all.
Following ten cycles of bendamustine, I did about a year and half of maintenance, with my maintenance being Rev, Velcade, dex and another steroid, Medrol. In March of this year, my numbers started to trend upwards. We considered going to pomalidomide (Pomalyst), but since we had such great results with the bendamustine, we opted to go back to it. And that’s the thing with myeloma. Yes, it eventually outsmarts previously successful treatment, but my philosophy is use what works as long as possible and save other drugs for later, if possible. I just wrapped up my 8th cycle of bendamustine since my March relapse. I should be going back to maintenance next month. Last month, my myeloma numbers were better than they were two years ago when I first went on maintenance. My kidney numbers are creeping up, but I think that’s because of the Bendamustine–and I’ve gotten a little lazy with my kidney diet. It’s hard to do everything right all of the time. I have to enjoy life!
And that’s my story. I live pretty normally. Working full time, although I’d like to “retire” in a couple of years. Obviously my energy roller coasters with the dex and the chemo, and I’d hate to think I spent my good energy on working as opposed to living.
Berenson has identified a new myeloma marker than can be tracked through a simple blood test. I don’t know enough about it to even describe it. He also feels like we’re getting closer to a cure; since my diagnosis, treatment has come a long way.
I should also add that I try to exercise, minimize sugar intake and do acupuncture, all to help keep my immune system up; an important aspect of fighting myeloma. I also believe in the philospophy of Dr Abrams (complimentary medicine specialist from San Francisco) and the positive benefits of medical marijuana. He says it helps with sleep, pain, nausea and inflammation. Both Berenson and my local oncologist (where I do my infusion) both say that 10-20% of their patients use medical marijuana. Nutrition was a more difficult one to engage oncologists in. For that I’ve seen nutritionists, done my own research and I follow Danny Parker’s (MMB lifestyle columnist) advice.
Well done, Matt! At the start of my post I used the word “hopeful.” I could have also used inspirational. Why? Because Matt is an example of how adding a not often used, assisting drug like bendamustine, can help control a patient’s myeloma; in this case for an unexpectedly long time.
It would be nice if genetic testing could help our doctors know which drug combination will work best. Unfortunately, researchers aren’t there yet. But by being creative and experimenting with different dosing and combinations, a good myeloma specialist can help keep us live longer. I find that exceedingly hopeful!
Matt, I’m glad you’re doing so well! I’m looking forward to meeting you in person someday soon.
Feel good and keep smiling! Pat