Myelofibrosis–A Personal Journey

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Chimerism (Ky-mer-ism)

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So what does that strange word mean? It’s the percentage of cells, post-bone marrow stem cell transplant, that are donor-derived versus recipient-derived. It’s revealed by a simple blood test, and there are 2 types of blood cells the doctors care about–each type performs a critical function in the body. For those in the Myelofibrosis-world, they are referred to as CD3 and CD33.

A stem cell transplant is only successful if the body runs on all donor cells all the time. Why? Because the recipient’s cells had cancer. That’s the whole point of the transplant. Kick out the recipient’s cells and replace them with healthy ones.

I bring this up because R’s CD3 and CD33 cells were at an amazing 100% and 100% a month post-transplant. None of his cancer cells were detectable, meaning the test equipment they used could not detect any of R’s cells (could not detect are the key words).

The 2nd time they did the test, results came back at 100% and 99%. No big deal. The 3rd time they came back at 97% and 79%. Concerning, because it looked as if some of R’s cancer cells might be elbowing their way back in, but the medical team said, let’s wait and watch. No reason to panic.

This last time, the cells came back at 100% and 76%. While the team is encouraged that the CD3 cells are at 100, they are discouraged by the steady decline in CD33 cells. It appears R’s cells are growing (the donor cells are losing). Before they tell us he’s on his way to relapse, they’ll do another bone marrow biopsy (like his 9th). A number of important indicators will tell them what’s happening and whether they need to take preventive steps to avoid a full relapse. The biopsy is scheduled 3 weeks from now, and it takes a while to get all the results. Waiting stinks!

If indicators don’t look good, they’ll get more cells from the donor (given he says “yes”) and give R a boost. Not a full-on stem cell transplant again with the chemo and all of that. It’d be more like getting an IV drip of fluids when you’re dehydrated, only with donor cells, not saline.

We are concerned, but not crazy concerned. Things had been going really well, so sure, this is a bummer. My personal worry meter is at a 6-7 out of 10. Cancer sucks… but we have a wonderful family and network of support. We live in a lovely home in beautiful surroundings, and insurance is covering a vast amount of expenses (hundreds of thousands of dollars). We live in Seattle, where the best transplant center in the nation is located. Bone marrow stem cell transplants were “born” here, and Fred Hutchinson Cancer Center has more experience than anywhere in the world.

R is getting out a little more and driving short distances again. His light-headedness, foot/hand neuropathy, and gout pain are gone, although in the past week, he’s been incredibly tired; more so than his usual cancer recovery tired. And GI tract issues come and go.

Thank GAWD we have each other. Hugs to all.

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