Tuesday, June 9, 2009

Transplant B, Day +13: Plateau blues

Well, here's where we are. White counts normal, platelets on the rise, CRP falling, red blood counts still low but they'll recover. Electrolytes normal. Uric acid normal. Yippee.

My M-spike has been at 0.4 for the last three pulls, including the one from yesterday. I know that we haven't seen the full effects of the transplant, I know I'm not done with treatment, I know it will continue to fall, I know, I know, I know.

Doesn't matter. It's hard not to be disheartened. My first transplant, from the day before to the day of discharge, took my M-spike from 4.0 down to 1.6. Yes, it later fell to 0.7. But my second transplant has only taken it from 0.7 to 0.4.

Achieving complete remission -- and immunofixation-negative complete remission at that -- is essential. 85% of people that achieve CR in BB's protocol remain in remission 4 years later (that's the farthest that they had data at this point). If one makes it to six years without a relapse, one can consider to be very likely cured.

The fact of the matter is, I'm not there yet. And it's upsetting, to go through this unbelievably aggressive protocol. And now I find myself second guessing...would I be in remission if I'd gone for the standard protocol, with its additional induction cycle and more intense Melphalan, instead of the lite protocol?

I can hear BB dictating comments on another patient from across the hall. Soon it will be my turn, and I'll have lots of questions for him.


  1. Remember every single person is different, even with the same test results. We all have to have faith in our own doctors and believe that they know what is best for US and OUR case. Jon is almost 2 years out from the tougher protocol and still trying to get to CR. We are still very much in the fight and WE WILL GET THERE - you have to believe!

  2. At the time of my transplant I was informed that Melphalan has a half-life of ninety days. Therefore, M-Spike readings before that time, though helpful, are premature.

  3. I agree with goodblood. The Melphalan has three more months to work. After my transplant,doctor waited three months to even check the 'numbers'.

  4. I'm with them. NO ONE pulls more blood and marrow than BB. It may be interesting to him
    but there's good reasons why other specialists
    wait to check things out and know it's not worth it to put their patients through all that. I mean no disrespect at all. It's just the way it is. The m-spike will go down more.
    Don't forget that with all this myeloblative treatment, your own immune system has basically been benched all this time. Things will improve once it gets back in the game.

  5. Everyone knows so much more about all of this than I do. My little girls and son pray for you EVERY SINGLE night still.