After 96 consecutive hours attached to a backpack filled with DCEP (a chemo combination) that basically wiped me out, my Myeloma numbers haven’t budged. I guess the SILVER LINING is that I didn’t get any worse! Anyway – NOT the results we were hoping for to say the least.
Dr. J wants to change the program again. This time we are moving on to a new drug: Bendamustine (Treanda) is a drug that is approved for Non Hodgkins Lymphoma and CLL – a type of Leukemia. It is not normally used on Multiple Myeloma patients but according to this article has a high response rate to relapsed/refractory Myeloma in combination with Velcade and Dexamethasone.
All I know is that we need to find a drug that WORKS! The other SILVER LINING is that my friend Matt was given Treanda when nothing else worked and it worked for him. I will hang my hat on that one! Matt also told me that there weren’t any real side effects with the Treanda. Just the usual Dex highs and lows which I am pretty much used to. This is good as it won’t interrupt my work schedule.
Its really crazy to think how when I was first diagnosed, almost two years ago, I had such a great initial response to the chemotherapy. The Cafrfilzomib, Revlimid, Dexamethasone combo put me into a brief complete remission. Even afterward my Myeloma remained stable for a year or so until my stem cell transplant. After that, everything went haywire and we haven’t been able to reduce the tumor burden since. In fact, until the backpack full of DCEP, the Myeloma was raging higher and harder. Funny thing is … I feel great. No real pain – some but not much – and I think it is more muscular than anything else. That is a side effect of DCEP. My energy is great, at least in comparison to a few weeks ago. I get tired around 5-ish and go to bed rather early around 8:30 or 9:00. But other than that I feel really GOOD.
One more SILVER LINING to the DCEP not working as well as we hoped: Remember when Dr. G from University of Pennsylvania said that the patient who needs it most would be admitted to the trial first? Maybe I have taken the lead in that category now. Funny – to get the therapy I want I need to be in the worse shape. That’s not something I really want to wish for.
By the way – on the Penn trial – I saw Dr. K at Sloan Kettering who does the T Cell Engineered donor transplant on Wednesday. In the interest of full disclosure I told him that I visited with Dr. G and Dr. S at Penn and I was considering their CART-19 T Cell Engineered autologous (my own cells NOT donor) transplant. Dr. K’s response was a simple, clear, concise “That won’t work.” I like the man’s confidence. More to think about I guess. More to think about in an area that I wish I never had to think about. I am tired of having Cancer. I am tired of the uncertainty of whether or not a certain treatment or protocol will work. I am tired of thinking about which treatment or protocol to choose. I have a great team of doctors and advisors but ultimately this is MY decision. OUR decision. MY FAMILY’S decision.
I mean – really – I AM going to beat this thing so let’s just get on with it already. It seems like a waste of time to go through all of these different things when the end result is my complete remission doesn’t it?