Thursday, October 30, 2008


The visit with Rifkin on Monday would not rate as one of the better ones. My numbers are now 2435, up about 450 points from last month, and up almost 1000 in last 3 months. Time to change treatment. We reviewed all of my prior treatments, the success or failure of them, and the options going forward. There are not many new therapies currently available. I still don't qualify for the HSP 90 clinical trial (due to prostate cancer), and that seems to be the only place it is currently available. He seems to be leaning towards going back to the Revlimid/dexamethasone, which is part of what I was on last Fall--along with velcade. That regime brought my numbers down from 5500 to 1400 in about 3 months. Only this time we wouldn't use the velcade. The other option was Thalidomide and dexamethasone, which was my initial chemo in April 2005, but was extremely hard on me, although quite effective. Rifkin is going to Boston in a few days and will present my case to the myeloma specialists there to get their input and any new therapies. Nice to have a doctor that is so connected. He's giving me a few weeks off before the next treatment starts in order to let me detox from the past 14 months of chemo. (2 weeks to detox from 14 months???--whatever).

We also talked about transplants, and although that is not part of the discussion for the next line of therapy, I am expecting that if the next line is effective in bringing my numbers down, he will want to do another transplant. He sounded like he would want to use Mike or Tom's stem cells this time around as opposed to my cells. Using a sibling's cells is called a mini allo transplant. It doesn't wipe you out as much during the transplant phase, as I don't think they obliterate your bone marrow with high does chemo, like when they use your own stem cells. The difficult part of a mini allo transplant is the graft host disease, which is when your body fights the new immune system (just like when a person's body tries to reject an organ transplant). You want to have some graft host disease, but not too much.

It's hard to hear this news as I sure don't feel as sick as this sounds, but it's kind of like having to defuse a time bomb. We'd better do something or else. It's taken me a few days to process this as I must admit, despite its ups and downs, I've gotten used to this weekly chemo regime. Of course, fear wants to creep in and shake me. Fear that the chemo won't work; fear of complications with the transplant, etc. But then I think, we've been through all that--including both chemo and transplant not working, and I'm still here. So, with most challenges like this, I guess we take it one day at a time. In that vein, Susan and I took Tuesday off, did some shopping, went out to lunch, and spent the day together. We had a great day! That is, after all, what it's all about. I suggest each of you do the same with someone you love. You won't regret it.

Rifkin will give me the new plan on November 17th. I'll check in with you then. Until then, be sure to vote.
Much love to you all,