Day +50

Bone marrow transplant recipients count down to day +100, as those first 100 days post-transplant are when there is the greatest risk for critical side effects, and after which the stem cells are most likely fully engrafted and functioning as the new immune system. It's the general divider between acute graft vs. host disease and chronic GVHD, and the period of time when you're most susceptible to infections, as the new immune system is not yet fully established.

So I'm halfway there!

At Monday's appointment they didn't have my preliminary biopsy results back yet. I had to wait for the CMV levels anyway, so the PA said she'd call me on Tuesday.

My blood counts dropped a bit more (likely due to being on the antiviral--valganciclovir), but are hovering in the just-below-normal range.

WBC: 2.3
ANC: 1.6
HGB: 10.4
PLT: 117k

My potassium and magnesium were normal (yay!) but my creatinine level was elevated (could be dehydration; could be all the meds), so I got another liter of IV fluids.

Tuesday (yesterday) I waited and waited for a phone call with results and finally just before 4:00 pm I called the office. The results were kind of mixed.

My CMV levels, which had dropped to detectable but not measurable last week, actually rose to 130 copies this week. That means I can't stop the valganciclovir yet. (Although my dose was cut in half after being on it for two weeks.) I'm trying not to worry about the impact of being on this strong anti-viral that long. The PA assured me that people often cycle up and down with CMV levels through the first 100 days. My chart did say that I was at high risk for CMV issues since I was positive and my donor negative. Around 100 days, my new immune system will hopefully be strong enough to fight off any re-surfacing of the CMV. Until then, I use the valganciclovir as needed. Fingers crossed that levels will be down next week.

The bone marrow has three levels of testing done. The first is microscopic examination. My marrow looked good with no evidence of pathology. The second level is labeling and running flow cytometry on a subset of cells from the marrow. That had "some aberrant cells." I'm not sure exactly what that means (other than some messed up cells), but again the PA wasn't overly concerned. The third level is the cytogenetics, which won't be back for about two weeks.

As it turns out, whatever the cytogenetics show, it probably won't change my treatment plan. Because I have a history of p53 mutation, whether it remains in the bone marrow now or not, having a history means I'm more likely for it to recur. So I will start my first round of maintenance chemo (Decitabine) on Monday. I don't know the specifics of it, beyond the fact that I have five chemo appointments scheduled next week. I'm not sure how long the appointments are or how frequently I'll have them, or for how long past transplant they'll continue.

I was initially very discouraged, but I was actually anticipating worse, and I realized that only a few years ago, maintenance chemo probably wouldn't even have been done, and my likelihood of staying cancer-free would be much smaller. So this is just one more inconvenience to hopefully move me toward cure. I can do it!

Physically I've felt a lot better this week than I have the past few weeks. Cara drove over for Father's Day on Sunday and it was so wonderful to have my entire family together for the day! Maybe that's why I got some energy back and just generally feel better able to get through this. One day at a time.

First time all together since Xmas!