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Old Tue Feb 3, 2009, 04:47 PM
Vera W Vera W is offline
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Join Date: Jan 2009
Location: Colfax Ca
Posts: 152
Question Vidaza Vs. Transplant

Hi all, I spend so much time reading that I always run out of time and energy to write. I WAS DX in 10-08 with RAEB II 11-12% blasts, Normal Chromosomes! I had no symptoms. I was a little more tired than usual which I chalked up to menopause, I turned 55 in August. I have Never been in the hospital and never been seriously ill. My condition was found by routine blood tests, and I have nothing but the utmost praise for the quick and professional treatment I have received from all the medical personnel that I have been involved with. I had several tests to rule out other problems but finally had my BMB in Oct. I was really not feeling bad at all and had just returned from an Alaskan cruise. I think that I actually surprised my hematologist because he really expected a low grade MDS. So within a week I was offered Vidaza, a clinical trail with Vidaza and an alternate drug that they are testing or the transplant option search.I didn't feel like I could do the 100 mile round trip to Sacramento Ca so I opted for the vidaza at my drs and my brother started his ALS testing. I am really impressed with Sutter Heath. I started My vidaza injections on Halloween 08. My doc was really worried that I could have had AML in 6-9 months and we were both counting our blessings. I have done well with the vidaza. I have the on sight reaction which is my stomach. It gets red and hot like a sunburn and even peels and tans like a sunburn. It is uncomfortable but not devastating. I have had both diarrhea and I was a bit impacted on my first cycle and I have learned how to manage it. Sore stomach, some dizziness but all in all I don't consider this bad. When I started my WBC was 1.9 and my nuetrifils 19%. My reds are a little low 3.22 lowest (3.77) now, my Platelets are never very low. The week that I have my injections my counts are perfect.5.5 WBC, 65% neutrifils. Of course it cycles down and over the holidays My WBC was very low but I never became neutropenic. Even though I was very tired at times I did OK. No blood boosters or transfusions and I am not bragging here, but I am very very Thankful! No fevers either and I think I blow my Docs mind!
Sorry this is so long but it is hard to say it all briefly. This is what I need help with. My brother was not a match, however I had several potential hits on the BM data base and a few weeks ago my doc called to tell me that a perfect match had been found. At first I thought that if I knew that I was doing well on the vidaza why would I want to subject myself to the unknown. Kind of like the devil you know and the devil you don't know. I researched this a lot and my Dr was so cool about it and he didn't want me to feel like I was being pushed in to it but said that he thought it was my best chance for long term survival.(The transplant Dr wants to do this yesterday if not sooner!) We talked about how smart the immune system is and it's kind of like the meds work for awhile but the litter bugger bad cells seem to find a way to beat the system and if the vidaza stops working what will I do next? That really made an impact on me! I just stated my 4th vidaza cycle and I was going to have another BMB before I made my decision but my health care advocate said not to be lulled into a false security. So they have started the ball rolling and I will be stating my pre transplant testing soon. I need input from any one that has been through this. Am I making the right decision? I am very healthy and strong, the chemo and the radiation scare me!Thank you for reading this. Vera

Last edited by Vera W : Tue Feb 3, 2009 at 09:24 PM. Reason: misspell
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