Last week my husband had a variety of tests run because of him going sepsis. One of the tests had nothing to do with that though, his bone marrow biopsy was scheduled to check the status of his cancer. In late September Tom had an aspiration (where they just take a sample of marrow, as opposed to a biopsy that's marrow and a piece of bone), it came back with a read of 10-15% residual leukemia cells down from 90%.
Ordinarily, someone would say Great News! but this is actually rather not good news, as after the first two rounds of chemo (what the called the induction phase), they expected this read to say 0 and him be in full remission.
Nonetheless, they said that while it doesn't happen very often, it can happen. Tom's a really big guy and when they calculate the amount of chemo to give him, they can't actually give him that amount. In fact, they don't even give him the full amount that they technically can because he's been so wiped out before on less than that, with the e. coli infection in the blood stream. Anyway, so because it can yield such results and not have too many red flags, they thought they'd give him another two rounds assuming it might just take a little extra. He did the two additional rounds and it would only make sense that if the first two took it from 90-10%, that another two rounds could wipe out that last 10-15%, right?
Our oncologist returned from vacation on Monday and we went in to get the results and see what was happening because this VRE infection he got last week was likely to put off his scheduled chemotherapy round 5 for Tuesday. As it turns out, there is still a read of 5-10% leukemia cells in the marrow. A decline, yes, but certainly no victory. He should absolutely be in remission by now from the chemo. It's not doing what it needs to and at a certain point it begins to harm the marrow. The oncologist said that with such a results and the chemo not being able to achieve remission (because at this point the chemo should only be acting as an agent to keep it at bay, not still be battling it into remission), that if we took just the chemotherapy route, chance of leukemia returning is much higher!
This means that he has to get a bone marrow transplant. It has to happen quickly as we don't want the leukemia to start spreading again. He's scheduled to start an extremely intense pre-transplant chemo on Monday. We have a consultation with the doctor who will do the transplant, today. We were really hoping to get in with UCSF for a second opinion, but as we only had five days to do it and our oncologist's medical assistant didn't send off his records until late yesterday, I doubt it will happen, but we're crossing our fingers.
I'm feeling a lot better now, but Monday was beyond tough. My husband told me that if this was the verdict on the marrow, that it would be the end of him. All through this journey we've been told, "You're young! You're healthy! You're active! We caught it really early! ... All of the odds are on your side because of these things, this will be easy, textbook, cookie cutter perfect...." And yet, here we are. So when the oncologist told us that with the bone marrow transplant that The odds are on his side and that someone like you who's active will bounce back much faster it's almost hard to jump on the positive train along with him. When we got to the stairs to leave, I absolutely fell apart. I had been saying repeatedly for two weeks that Of COURSE the marrow would come back clear, Thomas don't be so stupid! How could it NOT tackle that last 10-15%?!?!?! I felt like SUCH a jackass!
Anyway, I guess we'll know more today after talking to the guy who's done so many of these. From what the oncologist explained to us, it seems that my daunting ideas of bone marrow transplants isn't really the case these days. Just felt like I should share an update on how terrible things seem to be going. On the bright side, going to do this now, means that he will be sort of out of the clear from the marrow transplant around the same time that he would have finished the consolidation phase of chemo... and with the transplant there is no maintenance chemo, saving 18 months on treatment time. So hopefully for once everything does go according to plan and he does well and we can get back to our lives sooner than expected.
Over and Out.
