Need info on Vidaza

[SusanJ]

Hello friends,

Just came from the doctor with my dad. The results of his bone marrow biopsy are virtually
unchanged from January, he has 6% blasts. That’s good news. Bad news is his blood counts are so low, he is very prone to dangerous infections. The doctor has suggested that we read up on the pros & cons of Vidaza, and next visit we will talk about going that route. Can anyone tell me about their experiences with Vidaza? The doctor said that it might help and might not. Thanks for your help!

Susan

[Jimbob]

I did not use Vidaza but suggest you check MedlinePlus or Drug Digest websites. Or you can google Vidaza if you don’t get enough info from other members of the forum.

Here’s one I often use:
http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/500539.html

[SusanJ]

No one else has any info or experience with Vidaza?

[Dennis]

I’ve got experience with it, but that may be changing.

Initially, it seemed to help, relatively few side effects. It did take me from a transfusion every three weeks to transfusion free over six months — but the CBC numbers have been steadily declining since December, and the round that should have started this month was withheld pending a biopsy.

None of the treatments for MDS work for everyone, nor are any of them a cure. If the doc thinks Vidaza may help, it’s worth a try. You may also want to ask about Revlimid — its a pill as opposed to injections. However, while Vidaza is approved for all types of MDS, Revlimid has limited approvals.

Dennis

[SusanJ]

Thanks Dennis. If you don’t mind my asking, how old are you? My dad is 73 and also has congestive heart failure. I’m not sure how these factors will go along with Vidaza treatments. We will just have to discuss it and try to do what we think is best. I just want all the information I can get before we make a decision. Thanks again.

[Dennis]

A mere babe of 53.

If you do a search of the archives on Vidaza, there’s been a lot of posts on it. Also, they have a website (of course!) at http://www.vidaza.com

I haven’t had any problems that I could say were directly attributable to the Vidaza, other than soreness.

Dennis

[SusanJ]

Thanks Dennis. A question, is it possible for this disease to go into remission, like cancer, after the treatment with these drugs? My dad is of the mindset that if he does do this, then this “problem” will go away.

[Dennis]

The current thinking is not “remission”, but rather “control”. Thats what my oncologist called it. Unfortunately, MDS will not go away, outside of divine intervention or possibly a stem cell transplant.

One protocol calls for the patient to receive vidaza “as long as it continues to benefit . . .” [the patient].

I guess they’re trying some other stuff that may do the remission thing, but those are heavy duty chemo regimes, and nothing has been proven yet that I know of. If anyone does know of something, feel free to correct my incomplete information.

Dennis

[Terri]

Bob has been on Vidaza this time around for about 20 months now and it is just a means of control He has had only one tx since Dec of 03. His counts go up and down, but our main concern is the wbc they are always high.
Its a life style adjustment, the disease the treatments etc. But we are happy and enjoy each and every day we have together and try not to think of what is behind the door.

[SusanJ]

Terri,

How does Bob feel with the Vidaza treatments? Is he sick all the time or is he able to do things? I just struggle with the notion that even if we could “buy” time with the Vidaza, would it be worth it for my dad if he was sick all the time. What a choice!

[sdrake]

Susan J,

My dad has been on Vidaza since 02/05. It has worked well for the most part for him. Dad’s white count gets pretty low, and it usually takes 5-6 weeks between the rounds rather than the 4 weeks that it is “supposed” to be. It definitely helps his RBC and HGB. He has only required two transfusions since starting the Vidaza. Dad says the worst part of it is the constipation caused by the antinausea medication they give him before his Vidaza shots. His arms also get pretty sore at the injection sites, but other than that he has gotten along quite well. We are certainly thankful that the Vidaza has controlled the disease, but keep praying for more, better options. I hope this helps.

With prayers,
sdrake

[SusanJ]

Thanks Sdrake,

That does help. I guess what I’m wishing for is a magical pill that he could take with no side effects! Whatever he decides to do will come with risks and side effects, so I guess I need to resign myself to this. I want hime to live at least another 20 years! Please know that I am praying for all of you!

SJ

[Jim]

Susan J,
I started Vidaza treatments last year about now. The first one was full strength and knocked me for a loop driveing WBC and RBC down. The second and third ones were half the usual dose but still knocked me for a loop and required two transfusions. This time my Platelets also took a dive but I didn’t need a transfusion for them. By early fall, the doc stopped them and started me with Aranesp. I was able to do most normal activities but got tired fast. I was carefull to avoid crowds to avoid infections.

Did it work?? At first I didn’t think so but now I’m not sure. The doc stopped the Aransep in early December as my RBC and HGB are near normal and continue to be. My platelets are returning slowly with treatment with Danazol.

JW

[SusanJ]

Jim,

Thanks for the info. I guess it really all comes down to taking the chance, right? Nothing comes without risks. I just hate to see my dad so sick and knowing that it still might not work.

[Jim]

Quote:

Originally posted by SusanJ:
Jim,

Thanks for the info. I guess it really all comes down to taking the chance, right? Nothing comes without risks. I just hate to see my dad so sick and knowing that it still might not work.

SusanJ,
What’s your other choice??
JW

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