Apparently I have friends and relatives who somehow didn't know I have a blog and were not aware of my health situation. So for all of you I will give a hopefully quick synopsis of my history with MDS.
In June 2005 I was diagnosed with myelodyplastic syndrome, found because I was having a lot of bruising. For some time I would get periodic blood tests while we watched the progression. As long as I was maintaining the advice was to not do anything. My counts slowly lowered over time and in Feb 2007 I started with shots to boost my red counts. Well, all my counts continued to go lower. I was being checked monthly, then weekly. Besides my hematologist here, I also explored alternative treatments and used with some success, some of those remedies.
In Feb 2008 I went to NYC to consult with Dr. Azra Raza, who is considered the world's specialist in this disease. At this point I was having to get periodic transfusions of red cells. She wanted me to start Vidaza treatments as soon as possible after some tests. Practically, this would have meant starting in April or May of last year. As we had a family trip to Italy planned for June, I chose to wait until after that to begin Vidaza. That worked out fine. (And Italy was just the most fun ever!)
I completed the recommended 4 rounds of Vidaza last fall, and it had no positive effect on my blood counts. Things dropped as expected with the chemo, but did not bounce back as hoped. Then I started Dacogen--the second drug designed to accomplish the same goal--and I completed three rounds of that one. While the "recommended" protocol is to try at least 4 rounds of this one as well, it has become apparent that it also is not helping me.
After 3 times in the hospital--two of them after starting Dacogen and the last time for almost 3 weeks--it seems likely that continuing further with it is likely to hold my immune system in the cellar until some insurmountable infection come along. Mike and I talked about this together and then with my doc. We are all in agreement that I cannot do any more Dacogen. There are no more drug options available. Furthermore, my continuing very low white count is dangerous.
I have recently rebounded some (go neutrophils), now that we are not driving everything down with more chemo, but my immune system is still extremely weak and is likely to stay that way without some alternative treatment. Also, the neutrophil count can go up and down weirdly. It was 0.6 when I got out of the hospital last week and 0.3 in Nashville yesterday. Of course, there could be some variation in the machines doing the reading, but I'm anxious to see what it is at my "regular" lab this afternoon.
Now there really is no good alternative treatment, except to try a bone marrow transplant. So last week my doc here set up an appointment for me to go to Nashville on Monday to talk to a doctor offering what the doctors here believe to be the best transplant option for me.
So now everyone is up to date. Stay tuned for Part 2.
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