November 13, 2006 at 6:24 pm #16008
If my counts drop I have gotten advice from Univ Mass and City of Hope docs to start Vidaza. There have been some posts that people have stated that their docs have said that once Vidaza is begun that it should be continued indefinetly or the MDS could or would return to pre-treatment levels and continue to progress. I asked this question of the AA&MDS site and they said that some dr. feel that to be the case and some do not.
I guess it is to new a drug to have a protocol that is followed by most.
My question for the forum folks is what have you experienced, and what do your docs say?
BTW I am now in Colorado getting ready to do my thing on skis.November 13, 2006 at 7:21 pm #16009TerriMember
Bob Started Vidaza on a Compassionate Use before it was approved in Nov of 2003. He went for six rounds and all seemed well, blast were reduced. so the Doctor stopped the Vidaza after 7 months his whites started creeping up and our Doctor looks at blood smears each monthly visit to see him and he saw some abnorm cells so did a BMB. The blast had increased to about 12-15 I believe. So back on the Vidaza. His blast are under control now and If you look at some of my post that I have started with updates. You will see overall he has been Tx free except just recently do to some bleeding problems. SO far that is now under control and today He started back on the Vidaza. our Dr feels that Bob is a Success story with the Vidaza it has kept the disease at large, has not progressed to AML . His counts are ok.
Whites are always elevated, Reds norm, HGB Mid 10’s and Plts 50-60’s right now. There is not much research on the drug as far as lasting effects and our dr feels it is the drug for Bob since he takes it pretty well, his counts do not plummet when on it and he still functions. I wills ay overall life style due to the Disease has changed drastically for Bob, but we have made those adjustments. He is RAEB-T class
Hope this gives you some insightNovember 13, 2006 at 8:22 pm #16010eveMember
my dad has been on vidaza since the clinical trials – 11/03
the doctor will not take him off – he has reduced the dosage and the number of days of treatment
dad is not the great success story, but vidaza has made him much less tx dependent
right now we are trying to cope with constant dehyration – which leaves him very weak –
as i always say – we take one day at a time and pray for the best
eveNovember 13, 2006 at 8:42 pm #16011
Have fun sking and don’t let anything upset your holiday.
Jim had a BMB on the 31st of October. His Biospy turned out pretty good but the Oncologist had his start the Vidaza in November for 7 days. They will be his 6th treatment and I am sure she will want him to start again in December. Jim has not had any Tx yet and we hope it doesn’t come to that. The only thing that is happening now is that he is tired all the time and has a lot of aces and pains.
I am waiting to see how he will take another dose of Vidaza in December, so that I can have knee replacement in January of 07.
Pray for both of us because we both keed as many prayers as we can get.
One day at a time.
FranNovember 13, 2006 at 8:44 pm #16012
Sory about the spelling
FranNovember 13, 2006 at 10:42 pm #16013
Just to clear any misconception, I am here for the winter to ski as long as my platelets do not fall below 50k. They are 80k now, up from 60k, perhaps due to the fact that I have been eating (drinking) about 1/2 a pineapple a day.November 14, 2006 at 12:40 am #16014KWJMember
Hey Chuck – I have been wondering about the pineapple thing for awhile. How does it help and how can I convince my dad to eat it?? LOL. He is being transfused every 3 days for platelets.
Thanks for any help. Have fun skiing.November 14, 2006 at 3:11 am #16015LorettaVMember
My dr. advises to continue Vidaza indefinitely, as long as I continue to have a positive response. I’ve been on Vidaza for 15 months. I was tx dependent every 3 wks. when I began Vidaza, but have been tx independent for 12 months. I am now on 150mg Vidaza for 7 days every 7 to 8 wks. In the beginning, (first 8 sessions) I was on a 4 wk. cycle but now it is extended to every 7-8wks. My excess blasts dropped from 10 – 15% at diagnosis to 6% after 4 months, to 3% after 12 months.November 14, 2006 at 11:50 pm #16016
How have you felt during the treatment, and how are the costs handled? On the medicare part D I would have to pay 25% until I got out of the donut hjole.November 15, 2006 at 2:38 am #16017shirlsgirlMember
How wonderful! You must be so relieved to be transfusion free. It’s so nice to read some happy news!
JodyNovember 15, 2006 at 3:48 am #16018RussMember
Chuck, Medicare should pay for 80% of Vidaza shots. They did for me and my supplement picked up the remaining 20% (After I met the deductable) Have fun on the slopes.November 15, 2006 at 4:27 pm #16019
My husband has been on MDS since 05. He changed insurance in 06. He was on a HMO and now he is on Medicare plus AARP. His docotr suggested that he get out of the HMO, since it doesn’t pay much for Chemo and Oncologist.
Since he went on Medicare plus they are pay for his chemo and doc visit. He also has V.A. and Humana for prescription drugs. Humana cost 18.20 a month starting in 07.
I am having some medical problems myself. I need a knee replacement. I am hoping that I can wait until next year when I get out of this HMO. I hope to be on the same insurance as my husband and will try and get into the Core Institute to have it done.
FranNovember 15, 2006 at 10:23 pm #16020
Are there any on the forum for whom Vidaza did not help?November 16, 2006 at 12:29 am #16021BkwitsMember
My husband’s kidneys failed after the 5th day of Vidaza shots. The hemo/onc said that they made a mistake in not checking his blood work for kidney function prior to taking Vidaza. I would not discourage anyone from taking the treatment but make sure the docs check for other problems, before starting.
By the way, Joe received Vidaza shots as an outpatient at the hospital. Medicare and his Blue Cross supplement covered all of it.
Good luck and God bless.
BarbNovember 16, 2006 at 12:36 am #16022RussMember
Chuck, Vidaza seemd to fail for me after about
8 months. I seemed to be doing fair until I went off of it for a couple of months while I visited UMASS. Dr. Raza recommended I go back on it but after 3 rnds I had a BMB where my blasts were up from 9 to 18%. She then suggested
Dacogen which I’m on now but have not had another BMB since.
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