Vidaza effectiveness????????

[tahoedonner]

I tried Vidaza for seven days and had very serious adverse side effects lasting for several more days, so I stopped using it.

I had always been concerned re the very small number of folks envolved in the tests that led to its general acceptance for MDS treatment.

Once Vidaza was approved for general use, I assumed that Pharmion, its producer, would monitor its effectiveness as more and more people used it.

When I contacted Pharmion, I was shocked to hear that they are doing no such monitoring and seem to have no interest in testing the effectiveness of their product.

Before I would ever resume taking Vidaza, I would want to know how effective it has been in its wider usage and whether it has actually cured MDS, improved quality of life, or prolonged life without adverse side effects.

[sarah]

It is surprising Pharmion is not monitoring their product. I can understand your concern. Hope you are feeling well.
Sarah

[Neil]

Statistics from clinical trials indicate 18% of those on the trials responded to Vidaza.
The next question is for how long?
Seems some will go for around 12 months before counts decline. Others a bit longer.
Then what?
Another drug?
More Vidaza?
Its not really clear. There are some other drugs being tested and developed, but so far no great results long term.

[txnmomma]

Quote:

had very serious adverse side effects lasting for several more days,

if its to ask, what kind of side effects did you have??

My dad is going to be talking with his hematol. at his next appt about Vidaza.

[Terri]

tsnmomma, Everyone reacts differently to the Vidaza, If you have read any of my post, the vidaza seems to keep Bob’s Blast in check.
We are lucky that his counts seem to stay holding on a stable level. He takes anti nausea medicines. But Our dr has him on an Antibiotic, He also takes a lot of vitamins for the Immune system. THe only side effects he has had is the nausea and the bruises where they give him the injections but we are working on that.
Wish your Dad well

[gemloyear]

tahoedonner, We haven’t had an update from you in along time. How are you doing? Have you resumed vidaza again? We have been concerned about you, we also miss your humour, along with JohnGR. I hope you are well.Let us hear from you.
Ellie & Glen

[franm]

Hi all:

Jim took Vidaza for 7 days and 2 days later he ended up in the ER. He has been in the hospital now for 7 days and I hope he can go home today. They are putting a stick in him so he can get the IV Antibiotics at the hospital as an out patient. he developed 102 fever after taking the Vidaza, his WBC count went down to 1.0 Platelets 52.

His Onc. is not starting him on anything until July and then she said she might start him on the new drug that just passed the FDA.

I just got out of the hospital myself…had a lead put back into place in my pace Maker.

Fran

[Jimbob]

Fran, you seem to have experienced about as many difficult situations as one can handle and you have been handling them so well. God must have something special planned for you and Jim.

[Dennis]

“The next question is for how long?
Seems some will go for around 12 months before counts decline.”

This information from the clinical trials needs to be examined a little closer. In the clinical trials, once the trial period was ended, the drug was stopped. Current practice leans towards giving the drug until it clearly has stopped working.

My onc says the Vidaza doesn’t put the MDS into remission or cure it, but rather seems to control it. He likened it to insulin for a diabetic.

My response to vidaza has been rather amazing. I’ve been transfusion free almost since starting it, over 230 days now. The last biopsy showed improvement in the marrow, but the cytogenetics were still squirrelly. You don’t need to be a hemotolotist to know if they stop the vidaza, it wouldn’t take long for the MDS to rear up.

Then I guess it’s like trying to get a second remission after a relapse of leukemia — much more difficult. There are four studies on the Vidaza site of four pts who relapsed after apparent remission, none of whom seemed to recapture the original response.

Hopefully, they’re taking note of the results they’re getting with the stuff, so they can fine tune the protocols.

D

[franm]

Dear Jimbob:

Thank you so much for being so supportive of Jim and me.

Jim was in one hospital Monday and I was in another. I had to have a neighbor take me to the hospital and wait for me to take me home. I was alone all night, then I picked Jim up yesterday. Hard for me to drive but I just did it.

They put a pick in Jim so that he can can his IV Antibiotics, which he still has to take 2 times a day as an out patient. 6:30am and 3:00pm until June 14th. I will be going to my Cardiologist on the 14th of June to get my stiches taken out.

[Jimbob]

Fran, will they allow you to give Jim his IV antibotics or have a home healthcare nurse come in to do it? Or is that not covered by your insurance? btw, you are getting your stiches out on my birthday and the day my wife and I took off in our RV for 10 days opn Vancouver Island. Hope and pray all goes well for you.
Jim

[gemloyear]

Jimbob, One of the best vacations we ever had, That was the year we went to vancouver island. When Glen was still well enough to enjoy himself.It would be wonderful to go again, I’d love to see all of the beautiful gardens. I wish you and your wife a fantastic trip.
Take care, Ellie & Glen

[franm]

Hi Jimbob:

No, Jim cannot get his IV at home. Medicare will only approve it in the hospital or as an out-patient at the hospital. He has until the 14th to get the Antibiotics but we can’t get his WBC up. Right now it is 1.1, his RBC is 2.88, HGB 10.1, HCT 28.5, PLT is 85.

So, we can’t go out or have friends over due to infection. Are life is on hold and 1 day at a time.

Thanks again for your concern and please pray for us and we will pray for everyone on this Webb site.

Fran

[seekay]

There are six case studies listed on Pharmion’s website for this product: http://www.vidaza.com. Click on the health professionals link to read them.

ck

[franm]

Hi all:

Thanks for your surrport.

Jim is feeling a lot better now that he is not on any Vidaza or anything else until the beginning of July. He takes a blood test every Monday and if his test are OK, then he will start on a lesser dose of Vidaza for 7 days next month. He feels great now and hope that he stays that way for a long, long time.

The Onc. will do another BMB after he has a few more sessions of Vidaza and maybe he will start on the new medicine in August.

We are going to a Patient Education program today that is put on by the Leukemia and Lymphoma Society. We will hear Dr. Michael Carroll, MD, Asst. Professor of Medicine and Director, Clinical Leukemia Program the the Arizona Cancer Center in Tucson.

I hope we learn something new today, regarding MDS

Fran

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