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Welcome, Brian.
You write very well, and have obviously learned a lot about MDS.
I'm surprised that you were treated for so long without a specific diagnosis. I'm glad Moffatt could give you the facts, bad as an MDS diagnosis is.
It's very good news that your bone marrow biopsy report showed a good karyotype. Does your IPSS score put you in the Intermediate-1 risk category? If so, then that's probably why they didn't recommend Vidaza treatment, which is the standard for higher-risk MDS.
It's too bad that ATG gave you only 2-1/2 months of a response, although they may want to give it more time to draw a definite conclusion about how much it helped.
Exercising at the level that you can handle is very sensible. When you have low counts, overtaxing your body is not good for you, but neither is sitting on the sofa.
I know what you mean about uncertainty. It's the rare patient who doesn't spend time worrying about the future course of their MDS. My wife and I battled that by learning as much as we could and partnering with her hematologist, so we could have some control.
When do you expect to know if your sister is a match? Have they searched the bone marrow registry for matches as well? Nobody wants to go to transplant, but it would be a comfort to know that the choice is available.
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