This is going to be a short but maybe not too sweet update. Basically, my numbers are stuck and just not budging either up or down to any great degree.
The weird thing is that I had a new bone marrow biopsy conducted last week and the results are frankly, very confusing. SOMETHING is working because the biopsy shows that my marrow is now "normocellular" at 20-40% (normal for my age) whereas back in December it was "hypocellular" at only 5%. That means that the marrow is doing its job, but the cells it's producing just aren't maturing into healthy blood cells. Lots of immature cells but somehow they can't seem to get to where they literally need to be - grown up and in the blood stream!
We met with our specialist Dr. Mountjoy last week and he was less than thrilled with where the numbers are now, at this three month+ mark. He seemed to think that if we were going to be seeing results, we'd be seeing them by now. We have another appointment scheduled with him next week to talk about the anomalous biopsy results, as well as option #3 (see following) for moving forward.
Options from here:
1. This is as good as it gets. I'd be what they call "transfusion dependent" with lots of medication side effects and lots of continuing blood draws and infusions. Neither of us are thrilled with this option, but it's on the table, for now.
2. Try another round of anti-thymocyte globulin (ATG) followed by immunosuppressive therapy but this time they'd use a rabbit-based serum, which is more aggressive and has greater side effects. Many people have responded to a second round who didn't respond to their first round. Right now this doesn't seem to make sense when #3 is probably my best chance and closest thing to a "cure."
3. Bone marrow transplant. This is the scariest option, but it could also be the best possibility of getting back to some sort of normal life. The treatment is brutal and long, starting with a full round of chemo. The side effects can be extremely nasty and even dangerous (you basically are replacing your entire blood production system with someone else's!) We didn't really think this was an option because of my age, but more data are showing excellent results in people in their 60s and 70s. We've gone ahead and at least put a few parts of this process in motion by getting blood samples and cheek swabs sent off to the National Marrow Donor Program (https://bethematch.org/) which has global reach. The search is on!
We have so much to learn before we can make any decision on how to move forward. There are thousands of studies and case histories of cancer patients going through bone marrow transplant, but there are so few of us aplastic anemia patients that there just isn't enough clinical documentation to give us clear answers.
So - we're hitting the books, the videos, the science-based websites and journals and will keep plugging along until we're more clear of the path ahead.
We remain vigilantly optimistic, and as any person who plants seeds knows, this is the truest form of organic optimism...
Stay tuned - our path hasn't been determined yet, but we know that we'll figure it out as we go. I couldn't do any of this without you, Joel!