Vidaza Treatments

[abe]

I just finished my second round of vidaza shots and both times i’ve had to receive packed rbc tranfusions.My platelet count was checked this week and was down to 22 and my Doctor said if it falls any lower i would need to receive some platelets too.I’m going to have port put into make it easier for the tranfusions.The Doctor said that vidaza usually makes you transfusion independent,and hopes that after 4 treatments things will turn around.After i have the port placed i’m going to ask to receive the vidaza thru the port verus subcutaneous injections.I would like to hear from other’s who have made the change and also how they have responed to vidaza.

abe

[ladycat53]

I was diagnosed with MDS in April of this year. My platelet count was 4 at that time. Yes, it is not a typo, 4. I had several platelet transfusions and 2 blood transfusions before I could start any kind of treatment. I can not comment on Vidaza as I am on Dacogen. But I wanted to let you know that the port is the best thing you can do for yourself. My arms were purple and bruised from fingertips to just above my elbows over a month. And my arms were in constant pain. They didn’t clear up until my port had been in about 2 weeks. I am in my 4th round of Dacogen, my platelets are at 211 and red blood cells are standing at normal levels now. I still have a slightly low white count but my Dr. is keeping me on antibiotics for now. Good luck and God Bless!

[suzie]

My husband Bill was diagnosed in 03, his platelets were the only thing that was affected at the time. We were told there was no treatment or anything that could be done to bring them up at that time. As of Jan 07 he had shortness of breath and felt like he was being suffocated, his red blood cells dropped dramatic. At that time they gave him 2 units of blood, then he began with stomach problems and cannot to this day sleep. Within the last month he was told that they wanted to put him on Vidaza….we don’t know what to do…he is not the type that takes to being sick and cannot do things he wants to…he is torn on if it is worth it or not…..he also has kidney problems, slight heart blockage and anurism in his stomach…which none can be treated because of MDS…we are confused and of course scared to make the wrong decision……..wish you all the luch with your treatment..

[Terri]

Unfortunately they never could get Bob’s platelets up high enough to do the procedures for the Port. So he was getting vidaza via shots. It worked for the first three years and seemed not to work as well when they tried increasing the dosage and Bob’s counts were starting to fall even more and he needed more transfusions.
I hope the port works for you

[Author]

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