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Old Sat Sep 9, 2017, 08:46 AM
Rarity Rarity is offline
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Join Date: Sep 2017
Location: USA
Posts: 70
Quote:
Originally Posted by DanL View Post
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.

***Yes, he does get to the 9's after transfusions. He says he's able to function in the mid 8 range with a little light headed at times and some tiredness. When the hgb starts to drop to around 8.2 and below, then he says he really starts to feel it.
We weren't aware that they can transfuse to a higher #. Have to question about that. I'm thinking maybe because he can function in the 8 range and they consider that his minimum level?

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.

***Watch and Wait is hard as you know all to well. We will take it! This is a difficult and complicated disease to live with. Too many unknowns. But, it is what it is. Finding ways to cope as best as possible and take one day at a time.

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.
***We are too. In a strange way it was like some of the weight was lifted but not letting the guard down all the way. Hoping he can get some years in too without the BMT.
Thank you again for some more insight on this. We appreciate it.
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