Another week-plus of needles have passed.
I'm still standing.
Well, actually, I've been lying down most of the time, but metaphorically the standing bit still holds.
The blood counts continue to amaze and confuse. Yesterday:
I'm still standing.
Well, actually, I've been lying down most of the time, but metaphorically the standing bit still holds.
The blood counts continue to amaze and confuse. Yesterday:
- Platelets: 142,000
- Hemoglobin: 12.3
Why they continue to be this high, even during shots, means one of two things (or a combination of both):
- the Vidaza is working
- I'm really good at MDS.
Nice to be good at something.
Meanwhile, the effectiveness of the new medication added to the drug "cocktail"—Vidaza, Zofran, Depatoke—is hard to assess. The leg splotches look like they're fading a bit, but that could just be wishful thinking; seeing what I want to see.
We'll see.
Meanwhile, the effectiveness of the new medication added to the drug "cocktail"—Vidaza, Zofran, Depatoke—is hard to assess. The leg splotches look like they're fading a bit, but that could just be wishful thinking; seeing what I want to see.
We'll see.
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I'm so pleased to find your blog. Since October 2008 my husband has been waiting for a definite diagnosis that the doctors expect will be MDS.
ReplyDeleteI think his case was picked up too early for positive diagnosis because he was in a drug study with his cardiologist and they were taking weekly blood tests.
Until now we've seen no symptoms but that's beginning to change a little and I expect after Christmas he will have a third bone marrow test done in hopes of firm diagnosis.
His platelet count has been as low as 11 but has been "stable" in the 80s for a while. Suddenly his white blood cell count has gone hay wire. His last report was:
WBC 2.0
Platelets 88
Neutrophils (Gran) 0.48
I'm sure MDS affects everyone different. I'll be following your blog as we move along in this process.
I'm particularly interested in the drug study you're involved in. I haven't read your blog yet so some of my remarks may seem dumb. I'm off to read now. Thanks for creating such a blog.
Linda--
ReplyDeleteGlad you've found me. Sorry to hear about your situation. It's a shocker and a bummer, as we used to say back in the day.
I'm not involved in a drug study, just that the drug, Vidaza, hasn't been in use long enough to yield any understanding of long-term use effectiveness. So far it's working for me, and that means we'll just keep going with it as long as it does.
Hope you guys get through this without too much nonsense and hassle. It's a tough one. Feel free to communicate at any point. My e-mail is kaplanword@gmail.com.