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Old Fri Apr 19, 2013, 12:34 AM
Peachy Peachy is offline
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Join Date: Apr 2013
Location: Colorado Springs, CO
Posts: 59
Preparation for Vidaza

Hello all -
First a bit about my husband (68). He began feeling tired 3 years ago. Blood test revealed low red counts (13 to 10.6). Blood transfusion recommended at 11.7, which he refused as no one could tell him what was causing the counts to drop. We were finally referred to a local cancer center and the first bone marrow aspiration was done Apr 2012 with red count at 10.6 w/1% blasts (RARS). We took the wait and watch approach to start.

During our travels last fall we had the privilege of meeting Dr. Steensma at an MDS seminar in Boston. Being new to MDS Dr. Steensma answered many of our questions. Later we had another blood test and his RBC had dropped to 8.3. On our return home we chose the option of Aranesp shots vs blood transfusion as his iron was very high already.

Long and short of it he has been getting an Aranesp shot about every 2 weeks since October. (I think of Aranesp as a bandaid that tricks the marrow into making more red cells, even if they do not mature.) It seems to help in the short run with the red, not the white.

Just last month we had an appointment for a second opinion at Mayo in Scottsdale, where most of what we had heard was confirmed. Another blood test run and the smear showed 5% blasts. Another bone marrow aspiration revealed 4% blasts, confirming that the disease was probably becoming more aggressive - now classified as RAEB 1. We made the choice to wait until September to begin the Vidaza due to more travel plans this summer. (Our philosophy - travel as far and as fast as we can while we can.)

At this point his RBC (3.39), whites (2.1) and HGB (9.3) are low, while platelets (261) are in the normal range. Chromosomes and Fish are in the normal range. We plan to continue Aranesp until time for Vidaza.

Now for my questions -
For me I would like to have any suggestions on the best way to prepare for the Vidaza. Am thinking his counts will probably tank and his counts are like a yoyo already. (I keep a chart)

He is looking into anything natural that will help the blood and to prepare for the Vidaza. Does anyone have suggestions?

We are also looking into what i think is called the "mini transplant" via stem cells. He has no living siblings and is getting to the point where a bone marrow transplant will be risky due to his age.

Guess there is no short way to tell a story and I thank you for your patience. I have read many posts and realize that many of you are in much more serious situations that we are at this time, yet know each of you that reads this realizes it is all frightening no matter where you are in the process. I will keep reading and absorbing all the information that has already been shared.

I am grateful to have a forum in which to ask and share.....Deb
__________________
Husband 69 dx MDS/RARS 4/2012,Arenasp 2013; dx RAEB-1 5% Blasts - transfusions, Vidaza - BMB 12/2013 35% blasts - dx AML M6b (Pure Erythroleukemia) - Induction/Consolidate complete Aug 2014 - BMB 5%; Not accepted for BMT ; New BMB 18% Blasts with dropping whites and platelets avg HGB 9
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