Vidaza

[rsne]

For those of you who have had success with Vidaza, how long did it take? My Dad is about to start his fifth round without any results. He’s extremely fatigued and has lost 15 lbs, I not sure how much longer he’ll be able to continue Vidaza without any results. Thanks.

[jaxem]

should take for at least 4 rounds, preferably 6. what type MDS does he have? how old? after which round was last biopsy done? cbc results?

[moonjar]

Hi
Does anybody know of a support group for MDS in the Chicago area?

[ltlgiant]

I have been taking Vidaza via IV for a total of 100 – 3 weeks off and one week (5 days) on. It took about six months before I saw and appreciable change. I attended an MDS Forum in Atlanta where the doctor who conducted the clinical trials for Vidaza was present. I asked him directly – what it was doing to my body. He smiled and said, "We don’t really know." As for my "time line" for response, he indicated I was a textbook case and my results as expected. The process was described as "repairing the synaps between the brain and the marrow. When the signal is sent to produce the right cells, it reponds." Without extensive study, this can not be verified. I receive interim shots of Procrit, if needed. I am happy to say my Hemo is in the high 11’s to the mid 12’s. I had dropped to the low 8’s when Vidaza was started. I did not want to go the transfusion route with its problems. Check out my Video in the "Links" portion of the main web page (left side ) The 3 parts are on the lower right side on the links page.

Hope this helps.
Ray

[ccpat]

Dear Ray,

That is a great U-tube video!! I’ll be sending to our kids and friends who don’t understand (not that we DO!) some of the things we tell them. Thank YOU!

ccpat

[ltlgiant]

ccpat..If you had your children view the videos I prepared, what were their reactions? Do they understand the disease any better now? I would like all feedback so I can utilize it when developing future videos.

Ray

[Adriana]

I know it’s been a while, RSNE, that you posted your question about your father, but we find ourselves in the exact same situation with my mom. She just had her 5th round of Vidaza injections, she has only gotten weaker, both in her red bloodcounts and her platelets and she ‘s been having fluctuating fever all the time. The doctors think this fever is caused by continuous infections she has no answer to. Did Vidaza finally show some results in your dad? How is he doing now? Hope it’s ok I’m asking in stead of answering….

Actually, I’m also asking Ray: how were you doing when Vidaza started to respond? My mom’s in pretty bad shape right now, taken into the hospital because of the fever problem, and I need to figure out where we stand…

[ltlgiant]

Adriana..I have a problem with my hemoglobin, nothing else. My Hmg was 8.2 when I started. You may learn something from my video (see directions in my post above on 8-24)I get my Vidaza by IV – the shots gave me a massive reaction at the site. It took about 4 months before I saw any appreciable change. Tell your mom to hang in there and not to get down. I am getting my treatment this week before departing for FL for the winter. I get treatment there without missing a beat. If you view my videos, tell me if it helped. Good luck and God Bless.
Ray

[rsne]

Sorry to take so long to get back to you. My Father did not do well on Vidaza, he had 5-rounds with no sucess. It brought him so low they stopped the injections. But as he came away from the treatments he began to feel better – not great, just better. Procrit twice per week has managed to keep him RB transfusion independent for 6-weeks. Although his platelets have not recovered from the Vidaza bringing them down. He is platelet tx dependent. He suffers from nosebleeds that require packing, which is not pleasant. His platelets are 8 or 10; with tx 24 or 28. I’m not sure how long you can get platelet transfusions??? Vidaza would have been great if it worked, but it did make my Dad worse off. It brought his numbers so low he’ll never get back to where he was.

[Hunter Bob]

There’s an inquiry on the forum under the topic of "Low Platelets" with the same question – how long can one keep getting platelet transfusions. We wish someone could answer that also.

Your dad’s counts and nosebleed situation sound exactly like mine – I just finished round 1 of the Vidaza and am getting procrit 3x a week to help RBC’s as well as leukine injections daily to help with WBC’s.

I hope the Vidaza helps me to be transfusion free for awhile once the treatment schedule is done. From reading many posts on the forum, this Vidaza reacts differently with everyone.

[rsne]

I wish you luck with Vidaza, my Dad’s Dr. said if it works – it’s like a miracle. Your miracle is in my prayers.

[Author]

Posts