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Old Wed Sep 6, 2017, 12:49 PM
JordanN JordanN is offline
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Join Date: Nov 2014
Location: California
Posts: 59
Hi, Justin,

Like everyone else here, I'm glad to meet you but sorry you had to find us here. Your grandfather sounds like a really fun and positive person, and I am sure that will go a long way toward him handling this diagnosis well.

My dad was 80 and an extremely healthy and active person when he was diagnosed with MDS RAEB 2 and was told that though age is not strictly a factor when determining eligibility for a transplant the reality is very very few people over 80 get one. It was not even offered as a possibility for my dad. In fairness, I'm not sure my dad would have wanted it if it was offered as the transplant process is quite intense.

As far as transfusions go, every bag of blood is not exactly the same (some are closer to expiration dates, some have slightly less volume, etc) so you will see some variation in how much your grandpa responds to each transfusion. My dad required transfusions for the entire course of is illness at a rate of about 1 to 2 units every two weeks (in general, one bag or one unit of red cells raises your Hgb about 1 point). We did notice that in the last few months, he didn't seem to get as much of a boost after his transfusions as he did in the beginning of his illness. My dad was never able to do the activities he did prior to MDS, but we found many ways to bring fun things to him rather than going out to be active (football tailgate parties in front of the TV, take out from favorite restaurants with close friends, setting up projects for woodworking for him so he could just do the actual woodworking, etc).

Vidaza is a type of chemotherapy used to treat MDS. It is usually given for 7 days via IV infusion or a shot followed by 21 days of no shots or infusions. The hemotologist or oncologist will determine if your grandpa's MDS would be best treated this way rather than a transplant or "watch and wait". Many patients have done some combination of all of these treatment options depending on how their disease is behaving at the moment. In the best cases, Vidaza can raise blood values like Hgb, white cells, and platelets and decrease the blast count in the bone marrow. While my dad did not experience this, we do believe the Vidaza kept his MDS at bay for awhile and was not a difficult treatment to go through as far as side effects, fatigue, etc.
His initial prognosis was 4 to 5 months and he survived for 20 months with only the very last month being uncomfortable.

I wish you all the best in dealing with this disease. It is a shock at first and very confusing, but everyone finds a way to handle it and your grandpa's great attitude and your obvious love for him will make it much easier.
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