Vidaza

[TEMBO]

Oh Goodness Dream I am so saddened with what you and your family have gone through. My husband was dx with mds the end of 2005, and up to this point he will not go through the different drug cocktails that MD Anderson have recommended including Vidaza. My husband is quite fatigued, but seems to be holding his own at the moment. At some point you want to go back to the doc’s, and say whatever you say, but then I read what your family have experienced and I thank God he has not allowed the doctors to proceed. Theses are certainly difficult choices, and you never know what may be the answer for each persons situation. What seems to work for one is a problem for another. God Bless to you and all your family. Loosing one’s Mother is one of the most difficult situations we go through.

Our Prayers and Thoughts are with you,
Karen

[dream]

Thanks, Karen, it’s been an extremely rough year. I was by Mom’s side the entire time and hated what happened to her. She was my best friend, and up until her first visit to the hospital (6 days after being diagnosed with CMML) she was the type of 80 year old we want to be. She lived alone, drove, did her own housework, small repairs around the house…she was very active. Vidaza may be good for some folks but only if used in the right hands. Her doc obviously didn’t investigate the drug well enough.
Terri

[SusanJ]

Thanks to all of you for your information on Vidaza. Terri, I’m so sorry about your mother. My dad is my best friend and it is breaking my heart to see him go through this. He, like your mom, has always been so active, and now he gets so tired just walking from the bedroom to the kitchen. It makes him so mad! I do not know what to do about Vidaza, I know the decision ultimately will be his. I have a feeling that if he doesn’t try it, he will regret it. I am trying to give him as much information as I can get on it. Please keep helping me friends!

[sdrake]

Susan,

My Dad was diagnosed with CMML about 18 months ago. He started taking Vidaza as soon as possible. I guess we didn’t really consider not trying it. At the time it was the only approved treatment, and we were just thankful that there was something to try. The doctors told us that it could take from 4-6 rounds of treatment before Dad saw results – if he was going to respond. After the initial treatment his wbc (which is high with CMML) started to come down and his hgb improved a bit. Dad’s spleen was very enlarged, and it even started to shrink. We were all encouraged by this. Dad has continued with the Vidaza since. There have been times when the treatment has been delayed because his wbc has gotten too low. He has required only 2 transfusions. The side effects haven’t been bad for Dad. His arms get sore, and he has had constipation which they really think is due to the antinausea medicine he gets before each shot.

Just recently Dad’s oncologist discussed Revlimid with Dad since he does have the 5q deletion. We were considering switching treatments. They did a BMB to see what is going on. The results came back better than we expected. His bone marrow is greatly improved. I think he is going to stick with the Vidaza for now. The Revlimid will be there for when and if the Vidaza stops working.

Dad has had a good response with Vidaza. It doesn’t work for everyone, and obviously isn’t good at all for some. I don’t know if this helps or not. The decisions are not easy to make.

Good luck and God bless,
Shari

[Engel]

Susan & Sheri,
My husband had his first round of Vidaza and he is doing great, his counts never even dropped during his treatment, we hope to continue it for at least 6 rounds. Good luck to all of you, I quess we each must decide after during our research what is the best option for our loved ones. Gloria

[SusanJ]

Thanks Shari & Gloria,

It’s good to hear success stories from Vidaza. It saddens me so to hear the unsuccessful ones. My dad has always had heart problems and I thought that would probably end up killing him, but I think I was wrong. I think it will be MDS. God bless you all.

[Author]

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