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Old Fri Sep 8, 2017, 06:07 PM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Rarity,

I experienced a couple of changes pretty rapidly - First, I felt generally horrible compared to before. Second, my hemoglobin dropped from 13 to 6 in a month's time. Third, I suddenly had peripheral blasts, whereas all of my prior marrow biopsies and blood smears had 0% in the blood, and no more than 3% in the marrow - albeit 0% until about three months before the change.

About the transfusions, I don't know that there is an established number, just that really high iron stores can be an issue. From what I know, that typically means dozens of transfusions, and they now use chelation techniques and medications to reduce the level actively.

I did see that you noted that your husband only gets to about 9 with transfusions - have you asked about going higher? They usually only transfuse to a minimum level, but depending on the patient's ability to cope with lower numbers, they sometimes will go to 10.

As for the whole watch and wait -- it is hard to live with, but is a better choice than transplant from an overall statistical study. This is really where having a team of doctors that you trust really matters, and being completely honest with that team when something doesn't feel right matters.

I am glad to see that the plan of action slowed down a bit to watch and wait for your husband though - As I think I noted earlier, I was there for almost 4 years and had a pretty normal life during that time.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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