Moving along; Donor identified and transplant date set for Nov. 16th.

Treatment plan is coming together.  I’m scheduled for a transplant date of Nov. 16^th. This is preceded by two weeks of radiation treatment in early November.  Some good news is that they found a donor! She is a 10/10 HLA match and 24-years old—younger stem cells are preferred—and lives in Europe.  This is really good news, expected news, but good news.  People of European descent have a high probability of finding a match in the registry just because there is more participation. Finding a donor so quickly wasn’t always the case: in the past people used to wait and wait for a donor, but now with the registry and the amount of people who have signed up, the finding-a-donor process has become much more successful.  Another advantage of stem-cell transplant today is that If a match can’t be found, they can use cord blood—from donated umbilical cords after birth—which have good outcomes even if the HLA match isn’t as good. If the donor for me follows through, she will donate the stem cells through apheresis, essentially a delux blood draw— it’s the same process as donating platelets or plasma. We all have a few stem cells flowing through our blood stream and the stem cells get filtered out and separated, while the rest of the blood is re-infused into blood stream. After her stem cell collection, the cells will be frozen and then flown over to Seattle. My transplant coordinator said a courier service oversees the flying process and I wondered about the details of this. Is it a special plane? Does someone fly with the cells on their person on commercial airline? It seems lucrative process because it’s special cargo. I mean, really, this is the medical field, you could charge through the roof.

Before the transplant I will get the conditioning. I’ve touched on this in an earlier post, but the process became clearer after I met with the radiation oncologist on last week. There are two segments: just brain radiation and full body radiation.  He started by saying I had a decision about how much radiation to receive: that I could decline the brain-only part. But then when I said I was leaning towards that option, he said, well, the transplant team might not allow that because they might only approve of a transplant that has the maximum chance for success.  So then it became confusing whether or not I did have say or not. But either way, I was happy that he sort-of included me in the decision process because, yikes, radiation is serious stuff.  The short-term side-effects seem unpleasant, but doable. It’s the long-term cognitive decline that scares me the most, but the long-term increased risk in tumors, and damage to the liver, lung, and heart isn’t fun either. Like all things medical, there is a spectrum of patient responses to radiation, so there is no guarantee about the cognitive decline, but what I could gather is the average response to full-body radiation is a noticeable drop in memory and sharpness. This doesn’t mean having to get a new job, but just being less sharp at the current one.  And that’s for regular full-body radiation, (what most ALL patients get if they’re going through transplant), but I have disease in the CNS unlike most patients, so I’m scheduled for targeted brain radiation too—which doubles the amount of radiation. And doubling the radiation doesn’t mean doubling the risks—it’s not linear like that. The radiation compounds so the chance of side-effects increase by more than double. What’s especially tough about the decision is the lack of evidence for the benefits, but the known increases in risk for all the terrible things.  There just isn’t a proper study (and I can see why) to test whether an extra 12 gray of radiation to the brain has better outcomes than not doing that. But theoretically it is more effective at killing disease, and that is what the recommendations are standing on. 

The radiation will be outpatient, but I'll go into the hospital for the transplant and the first 2-3 weeks until the new stem cells are settled in my marrow and start producing new blood.

In other news: we've been doing a good job since the last post of getting out of town. We went to Anacortes two times, the Olympic peninsula (pics below from the Dungeness spit), and San Diego for Petey's wedding. Here is a pic of the fam from the wedding--a beautiful wedding in La Jolla with a ceremony which overlooked the Pacific.