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Old Wed Sep 13, 2017, 07:34 AM
Rarity Rarity is offline
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Join Date: Sep 2017
Location: USA
Posts: 70
Quote:
Originally Posted by Sue&Dave View Post
Hi Rarity -
It seems so counter-intuitive to not do something doesn't it? We have always been told that the earlier you catch cancer the better chances for survival. I am an action sort of person and found it incredibly difficult to just W&W.

*****It most certainly does seem that way. I've been down that road a few times with other family members. But those types of cancer were diagnosed, and treatment. Cut and dry. This as you know is not. But we are getting quite the education with this. I am an action type person too. I need to fix it yesterday, but sometimes that's just not realistic. I guess I'm doing the next best thing for him.

At one point we even made the decision to go to transplant while my husband was healthy in order to give him the best chance possible. A totally separate health issue arose that prevented the transplant and we are looking at that as a blessing in disguise. After he recovered from his multiple surgeries, his MDS symptoms began in full force and he was started on Vidaza. So don't forget there is another set of choices out there - medication. He has been lucky and not needed any transfusions except one during his first round. At this point we are certain that the Vidaza is doing more good than harm. As of yesterday - Day 1 of Round 9 all of his counts were normal! But just to hedge our bets, I have tasked his docs to come up with a cure for this disease in anticipation of the Vidaza not working at some point
Nothing has been mentioned as far as medication. Just monitoring his levels and transfusions.
His Hgbl dropped again this week to 8 and he was a little down about that. The platelets slowly crept back up over the months and is in the normal range now. That's great but just wondering if that is one of the inconsistencies with MDS? Will it go back down again?

That's a nice blessing not to have to go to transplant. I'm glad the Vidaza is working in his favor and his counts are normal! Hoping for the best for your husband and you. Thank you for responding to my post.
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