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MDS Myelodysplastic syndromes

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  #1  
Old Fri Jun 29, 2012, 05:47 PM
Twilees mom Twilees mom is offline
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What to expect from Vidaza

Hello, k I was diagnosed on 6/13 and starated Vidaza on June 25. So far just vomitting which they have controlled and rashs at injection sites on tummy. I'm so new at this and feel like I have no resporces. Can you tell me what to expect from treatment? whill I begin to feel better as trtmnt goes on in the 4 month cycle? I've been to Stanford for BMT consult and it just scares so badly. I'm not eating, not resting but I feel OK..not normal but OK. Any comments on expectations from Vidaza are appreciated.
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  #2  
Old Sat Jun 30, 2012, 05:42 PM
VickiB VickiB is offline
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Have had 7 rounds of Vidaza and so far so good. I was sick the first day of round one and not again ( I take Zofran each day of treatment). My tummy does get red and sore, but otherwise no other side-effects. My doc wants me to have 5 more rounds (July -Nov), and then we'll see. Good luck/
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Old Mon Jul 2, 2012, 07:08 AM
SLB SLB is offline
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I have just finished my 3rd round of vidaza. I have had no nausea (take zofran each time) but suffered bad constipation from the zofran. Also get the red, sore injection sites which peel and itch days later. I find that on my treatment days I always feel wiped out and tired but usually in the 3 weeks off I feel pretty good. My blood tests at the start of round 3 showed improvement in my Hgb counts and my platelets. No real movement in my neutrophils or white counts though (these have always been my worse). From what I read results can differ greatly. Some people see quick improvements in their counts and some never respond, but 6 months seems to be the initial timeframe to see if the vidaza is working. My haemotologist said he was probably give me another BMB at the 6 month mark. hope you continue to tolerate the vidaza well and improves your counts.
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Old Mon Jul 2, 2012, 01:33 PM
VickiB VickiB is offline
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Hi SLB,
Sounds as if you and I have very similar symptoms. I have found that taking Miralax during treatment week helps alot. I too feel pretty good the other three weeks.
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  #5  
Old Mon Jul 2, 2012, 06:52 PM
kris kris is offline
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Sending positive thoughts!!

My husband had 25 cycles of Vidaza. he was transfusion dependant, every 2 weeks before starting,after his second cycle he was able to sustain longer periods and by the third cycle he was maitaining able 8 on his own.
he felt the injection site inflammation and constipation were inconviences he could endure while being free of transfusions. he has always had a cast iron stomach but took his antnausea meds an hour before injections and seemed luck to never had any vomiting.
Just a quick note to wish you both well on your journey.
Research is making wonderful advances in the treatment of MDS.
__________________
Kris, wife of Rick. DX; MDS/ Ringed Siderblast 5/2006. Supportive care, then Vidaza x 25 mo. HSCT 11//1/11 doing GREAT!
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