I had my Day +100 follow up at NIH a couple weeks ago.
Everything went well — the flights, the labs, the pulmonary function test, the electrocardiogram, the echocardiogram, and the bone marrow biopsy.
The breathing tests showed that my lung function is just about as good as it was before transplant; this actually surprised me quite a bit given I haven’t been exercising at all. I also got most of the lab results before leaving NIH which were all good, too. I did have to wait about 10 days for my chimerism results (remember…the percentage of my blood/bone marrow that is Shaun’s vs. mine) and for the results from the bone marrow biopsy.
When I had the bone marrow biopsy done at Day +30, the results were good. They didn’t see any of the abnormalities in the bone marrow which prompted the transplant to begin with and my chimerisms were coming along nicely. There are multiple aspects they measure when doing the chimerism test, two of which in particular we’ve been paying attention to — the CD3 (T lymphocyte) chimerism and the myeloid cell chimerism. Before I was 34% and 97% respectively. Both excellent for that point in my transplant.
I met with Dr. Meyer, my Stanford doctor, last Thursday to discuss the remaining results. Again they didn’t see any abnormalities in the bone marrow but the chimerisms came back as “painting a puzzling picture.” My CD3 chimerism fell from 34% to 29% and my myeloid cell chimerism increased from 97% to 99%. Normally at this point of the transplant they like to see the CD3 number >50% and even though my myeloid number is so high, the low CD3 number suggests the engraftment isn’t as stable as they were hoping and there is a (small) possibility of graft rejection. As a result of this they are decreasing my immunosuppressant drugs (although I honestly have no idea how this is supposed to help) and I might have to have another infusion of Shaun’s cell (which Dr. Hickstein assures me we have plenty of in the bank). I’ll have my chimerisms retested in about 2 weeks so we should know more then.
Hearing this news from Dr. Meyer frustrated me. Mostly because it wasn’t something that I wanted to hear. I was used to hearing that I was doing better than most patients and this didn’t seem to jive with that fact and secondly because I had no idea what it meant. The idea of graft rejection just stuck in my mind making me pretty much tune out anything further at that moment that Dr. Meyer went on to say. He did try to explain it a little but it just didn’t make sense. None of it. I wasn’t asking the right questions to make it all come together. After meeting with him I did some research and e-mailed Drs. Hickstein and Parta and although it’s still not news I wanted to hear I feel much better about it. There are options to get this number up (e.g. taking me off the immunosuppressants and/or doing another infusion) and the chances of graft rejection in my situation are less than 5%. Again, we’ll know more in a couple weeks when we do the test again. On the plus side, I got some advice from Dr. Parta about this situation that I’m taking to heart. His advice was delivered in the following sentence…”I can assure you that there is no evidence that worrying about anything makes it better.” Thanks, Dr. Parta…I think this can be applied to a lot of things in life.
While I was with Dr. Meyer I took the opportunity to ask a couple things I had been curious about. First, if I could go back to work soon. And second, when I could drink alcohol again (not that it was overly important to me but I had been wondering when it would be allowed again). Dr. Meyer advised that I not go back to work until after my Day +180. Let me do the math for you. That’s the beginning of November. THE BEGINNING OF NOVEMBER. I was aiming for the middle of September and I understand this is the doctors advice but I’m not sure I want to take it. I also understand that me saying this out loud will likely encourage many of you to encourage me to not go back to work until November and now you probably think that it’s crazy that I WANT to go back to work and you would probably love for a doctor to tell you not to go back to work. But that’s the kind of person that I am I guess. Not that I’m getting bored or anything. I just uh, miss it. I’ll decide soon what I’ll be doing. Buuuuut…the second question and the answer I was okay with hearing was that he said it was okay if I have 1/2 glass of wine for “special occasions”, if I wanted, but that I shouldn’t tell him if I do. Huzzah!
On Friday, Alex and I went down to San Diego to visit some friends. I ended up ordering a glass of wine that evening. It was very anti-climatic and not nearly as satisfying as I was expecting. Unfortunately but maybe fortunately. I’m sure my liver appreciates the cleanse it has been going through. Especially after the chemo.
I am finally off the steroids and have been doing pretty well the past couple weeks. I’ve had a persistent nausea which hasn’t lead to any appetite changes nor vomiting but just lingers and I’ve also had a little itchy skin. Both symptoms are likely due to returning GVHD which Dr. Meyer suggests is actually a good thing. As long as these issues don’t get any worse I’ll continue to stay off the steroids. I’ve also been instructed to stop 2 additional medications so my daily dose now only includes a few pills. Definitely much better than where I started.
I still don’t feel the greatest about the news from Dr. Meyer but honestly there isn’t anything I can do right now that will change the outcome so I’m trying my hardest not to worry about it.