It's been a while since my last update and that's mostly due to
me spending some extra time at home with the family with nothing extraordinary
happening, which is a good thing. My last round of chemotherapy was the
second week of April. I completed the one week hospital stay plus the
twelve days of follow up in Orlando before heading home just before the end of
the month. I had a two-week break planned before starting the third and
hopefully final round of consolidation in May.
In the background, the conversation around long-term survival
rates continued with my doctor and the bone marrow doctor that came to see me
during my last round of chemo. The cytogenetic evaluation done when I
first checked into the hospital classified me as intermediate risk (there's
also favorable, and unfavorable). The bone marrow doctor was convinced that AML
with intermediate risk needed a transplant. He said without it, I would
relapse most likely within five years. He seemed very straight forward,
knowledgeable, and convincing in his position. But it was hard to listen to the
news at this point - when I was only a few weeks away from completing the
original chemotherapy regimen. I went back and forth with my oncology
team during this time. They were telling me that my odds were not that much
better with the transplant. I was caught in the middle of this discussion and
had to go find additional resources to help make my decision.
The first place I went was to a friend who had AML in his early
40s, had the transplant, and was now living cancer free. He still had a
close connection with his doctor and forwarded the high-level specifics of my
case. His doctor agreed that the bone marrow transplant was the way to
go. Of course, his doctor was also a bone marrow transplant doctor.
I wanted another opinion of an unattached oncologist. I made an
appointment at the Moffit Cancer Center in Tampa. This happened on the Thursday
before the Monday I was scheduled to check back into Florida Hospital in Orlando
for my final chemo round. The oncologist there agreed again with the
transplant. He explained that the intermediate risk area was a gray area and
perhaps in another five years they would have it broken down further into
subtypes that would benefit from the transplant. But for now, the latest
evidence was leaning towards the fact that patients with AML with intermediate
risk cytogenetics did benefit long-term from the transplant. Recent studies had
shown that with the transplant, if you make it the first year without a
relapse, I would have a 55% chance of staying cancer free for good. If I
make it 2 years without a relapse, cancer-free stats go up to 70%. And at
3 years, they go up to 80%. This was verses data for chemo which only
that showed about the same 55% success rate in the first year, but by year 5
only 20-25% of patients had not relapsed.
During the stay in the hospital, they drew a large blood sample
(see pic) to perform HLA testing which is the way they match up donors. They
also began the process of testing my two sisters who each had a 25% chance of
matching. My sisters were only partial matches so next they went to the
Bone Marrow database (https://www.bmdw.org/).
Initial screens turned up several likely matches and further screening turned
up two EXACT matches. So the issue of finding a donor was no longer an
obstacle.
The fact that we had a great match for a donor and the result of
the Moffit meeting convinced me that the transplant was the right thing to do.
The Moffit doctor also suggested that if the transplant was soon, he
would recommend skipping the final round of chemo. He suggested that I would be
better served to rest and recover fully to head into the transplant at full
strength. So I cancelled out of my final round of chemo and spent the time at
home.
It was great. I was able to get the PICC line removed and
feel like a normal human again. My kids had tons of year-end school
activities that I was able to attend. And I managed to get in a fair
amount of tennis. I also worked on my general endurance mostly by biking.
I did try jogging a few times, but it was still taxing. I was also able to
complete all of my pre-testing to get final clearance for the transplant which
included several trips back to Orlando for x-rays, lung testing, and my least
favorite - bone marrow biopsies. All tests were good and with the cancer still
in full remission, they scheduled me to start the process on June 10th.
If you want to dive further into the details of the transplant,
here's a good site:
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