The goal of a bone marrow transplant is for the donor cells to graft to the host environment and the host cells then disappear for lack of use. (Think of grafting a beautiful rose with a weak root onto a stronger root stock.) Gauging the progress of the transplant is some art, some science based on watching the body's reaction.
While the donor cells are working on the graft, Doctors are looking for symptoms of graft vs. host disease (gvhd.) These symptoms commonly include rash, nausea, diarrhea, facial flushing, loss of appetite. As long as one or more of these symptoms is present they know the donor cells are busy.
Another indicator is the blood counts, specifically hemoglobin, white cells and platelets. If those counts are rising while gvhd symptoms exist, then we can be pretty sure the donor cells are active.
Results of bone marrow biopsies over time show exactly what is happening in the marrow, but this is invasive and is generally called for when there are no other signs to rely on.
The results of my last bone marrow biopsy showed 66% donor/34% host. And 95% of the host cells had 5q-. So I started taking Revlimid to kill the 5q- and preparing for a booster. Two separate courses of action. By the time of that biopsy, most of the gvhd symptoms had disappeared, indicating the donor cells were slowing down. But the blood counts were still high and rising which was a good sign. So the booster was to "rearm" the donor cells so they would go back to work. The Revlimid is to kill the 5q- cells so I don't get Leukemia again.
After taking the Revlimid for a week, the gvhd symptoms reappeared in the form of a rash. The rash first showed up on the day the booster was scheduled. There was a lot of debate about whether it was actually gvhd, but the doctors felt they had time to see if it developed further before they proceeded with the booster. Having gvhd symptoms again indicates the donor cells are back at work.
And it has developed into full blown, uncomfortable gvhd. Now we still have the booster option in our arsenal of backup ammunition.
Revlimid has an impressive track record at curing 5q-. It has some side effects that include blood counts dropping. Stopping the Revlimid for a few days usually sees the blood counts return to normal. My counts are rising daily so I will probably start taking the Revlimid again by the end of this week. The only sure way to check the results of Revlimid is with a biopsy and as long as things on the outside are looking good, we won't do a biopsy for a few weeks.
My theory is that 5q- is what powered my cells and made it impossible for Walt's cells to graft. Killing the 5q- weakens my cells and his cells can get busy. My hope is that we can maintain this balance of weakening my cells and strengthening his til a full and effective graft can occur.
~Cathi
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6 comments:
Pole position for Walt!!
We will have to get you more Lucky John Deere socks to wear. Might be just as good to have some of your brother on the outside and on the inside. Have a great week and looking forward to time at your house. W
This is such great news and so glad that things are still looking incredibly positive!
Sending you lots of love & more gvhd!!
-gail
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Thanks for the clear and detailed description of what's going on. It helps a lot in understanding the situation and the approach your regimen is taking.
It's always reassuring to have a backup.
Go Walt-cells, Go Graft!
Thanks for such a clear explanation of where we're at. Sorry you're uncomfortable but it does indicate good things are going on inside.
WV is nuntree - LOL
lots of love #2 GOT
After trying to read all the medical
stuff,my take on this is power to the Walt cells and down with the Cathi cells.
Love and Kisses
Nedra
Cathi, I have been keeping up with your information through Sarah and your blog. Still would love to hear from you, or maybe a quick visit on my part. You are definitely staying in there and doing great, Dana
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