new vidaza users?
January 11, 2005 at 1:41 am #3066helenmaMember
I’ve been reading of the results different people are getting from the use of vidaza since the fda approve it. My husband, Paul, is about to start his 5th round. He’s went through whith it all.. blood counts all down…needs extra hemo.. neuprgin shots…tiredness…extra weakness.. fevers…infections. What i’m wondering is how long does a person try the drug before a conclusion is made that it is not or is working? Theyv’e had to lower his dose to half doses. He’s been on this 5 months now and it seems like every month I can see him getting a little weaker. He’s been on thalimoide, arsnic and procret. He is also transfussion dependent. Thanks, HelenJanuary 11, 2005 at 2:32 am #3067ChristinaMember
My dad, Lou – 67 has just finished his 4th cycle of vidaza. We’ve been through the mill as you and your husband. How low were your husbands numbers? My dad has been in the hospital now over 1 week. Started with 104 fever, infection, he’s on antibiotics. His wbc was at .6 it took a week to come up. Finally it’s up to 2.7 his hgb was at 7.2 he has had 8 units of blood in one week!! That was so scary to me…I was wondereing if he was bleeding internally. His platlets are finally coming up. But I’ve been asking the same question…how long do we do this? The hemotologist said it’s up to the family to decide. I thought that was a bogus answer. I spoke with our doctor at Sloan Kettering – although it really was the nurse I spoke to – hard to get these dr.s on the phone. She said usually you go 6 rounds. As soon as he is out of the hospital we will go to sloan to see what the mds expert has to say. I hate to see him go through this, and it seems to get worse each month. But it will be his decision with the doctors advise if we should continue a few more months or try something else. He has also been on thalidomide – 1 year, and is still on procrit. What dose is your husband on? I would like to compare it to my fathers…I will find out his dose. I thought they go according to weight…did you find that as well?
ChristinaJanuary 11, 2005 at 1:52 pm #3068TerriMember
Helen, My Husband did six rounds the last time and his counts stayed pretty stable, his blast got down to normal when they did the BMB after the sixth round. that was April,, 7 months later his blast came up again as well as the WBC and he is not on his third go around of the Vidaza again. Still his counts are hanging in there and tx free for over a year. He does take a lot of vitamins and supplements as we consult a Nutritionist for over a year now and the majority Boost the Immune system, he also takes B12 for the rbc etc.
We are starting to see his wbc go down to normal again so hopefully so are the blast being reduced.
Not sure when dr will check with another BMB.
I wish your husband well with his treatment and hope it starts getting betterJanuary 11, 2005 at 3:28 pm #3069Bob PMember
That is a tough question to answer about how long to continue Vidaza treatment. Each of us with MDS is so different and the drug reacts differently to. For myself, I was told that if it does help I should see it between the 4th and 6th treatment. No improvement occurred. I continued on till the 8th treatment. There was no improvement in my marrow, or blood. BMB was the same. I just couldn’t take those swings any longer in my counts so I stopped it. I took the drug when it was still in trial as azacitidine with a specialist at Mt. Sinai. I was still getting weekly TX’s. The first month or so off the aza my counts went up and stayed there for a few weeks. NO, TX’s. Unfortunately it didn’t last but I must say I did feel really good for that time.
Bob…January 11, 2005 at 3:34 pm #3070NeilMember
Think you have some good thoughts in the previous messages. They were actual experiences.
Thus far stats indicate 18% of patients will respond to Vidaza.
What does his doc think?
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