Carl Sagan is one of the people I've most admired in my life. The Cosmos series helped instill in me, and so many others, an appreciation for the wonders of science, and an understanding of science as a method for approaching Nature, rather than what schools too often beat down to a list of approved answers to be repeated. Sagan eventually developed a blood cancer, myelodysplastic syndrome, for which he received blood stem cell transplants. In 'Billions and Billions', he muses in one of the essays about how receiving a stem cell transplant from his sister means that for his life afterward, part of his body would be from hers, and genetically female. I now share this life step with him.
If, for some pointless reason, you went back to the earliest entries of this blog, you'd find a few made from the 8th floor BMT unit at LDS Hospital in Utah. That was about six years ago, and in many ways my life since has been focused on not coming back here. But here I am.
In 2008 I was here for relapsed Hodgkins lymphoma, a disease where the first-line standard treatment is usually effective enough, meaning relatively less research was put into second-line treatments. The medically standard next step after a relapse was autologous stem cell transplant (if your own bone marrow is still clear of the disease) or allogeneic stem cell transplant (if you're marrow's not clear or if you've already had an auto). I was here for an auto, and typed some things into this blog.
My Hodgkins is refractory, it doesn't ever go away forever. When I relapsed a year later, the next-line standard treatment was an allogeneic transplant, but I looked at the life survival numbers they had and decided no way. Through my oncologist and clinicaltrials.gov, and with help from my mom who's skilled at researching things, I found some clinical trials for current cutting edge drugs for Hodgkins, and got into one for what's now called Brintuximab (always be SGN35 to me).
That set up a life pattern for the following years. Always a salvage treatment or a clinical trial to try to contain the cancer, maintainig a relatively normal life for many years throug various chemos and some radiation. That lasted until December 2013. My oncologist and I had put one chemo to an end because the last scan showed only mixed results, some shrink some growth. We'd figured to try another chemo for containment, or look what was on the clinical trial horizon, but there was a problem that my blood numbers were falling even without the chemo. I had a bone marrow biopsy and on the 9th they called me with an alarming new development: Leukemia.
Leukemia changes the situation tremendously. Hodgkins I know, I can deal with in various ways (including a few nutritional/herbal things I've come to trust --my standard is if someone with actual medical credentials is researching it somewhere, and I've also had reliable results from Chinese nutritional and herbal medicines). Even if I gave up and did nothing about Hodgkins, it would probably take a year and a half to actually kill me. Leukemia will kill in weeks, or a couple months at most. Now the allogeneic transplant I'd been avoiding seemed the likeliest option.
It turns out I'd made the right choice in avoiding the allo transplant five years ago (and the team leaders here had been subtly encouraging me to avoid it). In recent years, they've developed a new standard of donor transplant using haplo donors --relatives exactly half-matched. Hodgkin's patients do worse than other cancer patients at allogeneic transplants, but haplo transplant seems to be giving Hodgkins history patients good odds. It's still very new, so there aren't long-term results to compare. But the horizon looks hopeful.
It's been a difficult process. I was checked in days after diagnosis, started standard Leukemia induction treatment the 16th of December. After that the expectation was watch the blood numbers and plan for the transplant treatment. It took them awhile to decide exactly how to treat (Hodgkins and Leukemia together make a rare and challenging combination), then to get my health provider to approve. I'm now Day 7 post haplo, and the worst is over for now. I've been in the hospital far too long and hopefully can be out in a couple weeks.
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