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Old Mon Oct 2, 2017, 11:11 AM
JoMac53 JoMac53 is offline
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Join Date: Sep 2017
Posts: 75
I'm seeing this hematologist/oncologist through a clinic for low income, uninsured people. I don't know what his reputation is as far as MDS but I'm going to see what I can do about getting a 2nd opinion about treatment. I may refuse the 3rd Granix shot if my counts are lower again tomorrow. I don't even know if the doctor is checking my numbers or is being kept apprised of what's happening with me or not. I have a bruise on my arm from last week's shot that's 6"x2" with a hard 'lump' inside that's 2" long by about a half inch wide. I went back to the clinic Thur of last week (shot was on Tue) and showed it to 3 nurses, including the one who gave me the shot. She seemed shocked, like she'd never seen anything like it before, apologized that this happened to me, and acted like she didn't know what to tell me, just to 'maybe put warm compresses on it'. My doctor's only there 2 days a week (Tue & Wed) but there are other doctors there on the other days. You'd think one of them could have taken a look if it was that unusual.

I also found out some of the drugs used to treat the anemia part of this condition (of which mine is getting worse since starting the Granix, as well as the platelets) are made using aborted fetal cell lines which I don't want to use. Granix is not one of them. I'll probably end up with transfusions until I can figure out what to do.

And I want to know how long he's going to wait to check if my blasts are increasing. I think I'm going to insist on talking to him tomorrow. I'm getting very upset, waking every morning at 3-3:30 and unable to get back to sleep without taking a Xanax for quell the anxiety that keeps my mind racing.

Hard to be keep positive in a situation like this.
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Joanne, 65F, 8/17 dx Primary MDS-EB1, Pancytopenia; 6/19 MPN w/CMML characteristics, dr calling it AML even w/blasts <20%; 7/19 Induction w/Vyxeos resulting in complete remission with incomplete blood count recovery.
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