Revlimid Questions

[JulieMarie]

I know there are people out there using Revlimid already can you please fill me in on this new drug?

Where are clinical trials going on? Are they accepting new patients? What are the side effects of this drug? Does the patient have to stay in the hospital or just live by the hospital or can they be on this trail and live out of state?

Thanks so much!

[Suzanne]

As far as I know revlimid has been submitted to FDA for approval and is still in that process. My understanding from one of my study nurses is that when that happens all trials are closed that were under the guidelines that it is being submitted under so statistics can be compiled for the submission. Unless you can get it on a compassionate need basis you usually can not get the drug during that period except maybe for a different study-like combined with a different drug , different patient qualifying perameters, etc. If it does get approved, I do not know how long it takes to be available and for insurance companies to agree to pay since the cost will no longer be covered by the drug company.

[Dinesh]

I went to Stanford Univ. (DR. Greenberg) for consultation. My blast is 16 % from last BMB report. Dr. Greenberg recommended Zarnestra. If that does not work he recommended Inductio Chemo-therapy. Dr. told that for Induction Chemo you need to stay in Hospital for 3 weeks.
Can you please tell me about Induction Chemo?
and Zarnesrta.
Dinesh Shah

[Suzanne]

Dinesh, I have done both. Zarnestra is easy. Little white pills you can take at home and few side effects. Regular cbc’s and BMB’s to keep an eye on what is going on. Induction was not as hard as I expected though some people have had more trouble then I did. The chemo itself is only for something like 5 days. I was kept in the hospital for 30 days because they wanted me there until my counts were headed back up to normal. The chemo wipes out your counts almost entirely & you are very vulnerable to infectionuntil they come back up-hopefully without any abnormal cells. I read and walked in the halls and knitted. Only felt not great for a few days. I think it worked out better to stay in the hospital then it did for those who were released and had to try to keep their living areas clean enough not to catch anything or get an infection. Most of them ended up with more problems then I had. My blast level was at 75% when I went in for Induction. It had moved very suddenly and quickly from about 19-20% level. I did Induction and consolidation and then the zarnestra to try to prevent relapse but I do know that Zarnestra has been used first with something like a 30% success rate-that is pretty good for treatments for MDS and AML.Wishing you luck.

[RobbyKumar]

Hey All,

I had just over heard from my Mom that “Dinesh Shah” from La Mirada had passed away. I believe he is the same Dinesh that was posting on this board. Just wanted to let you know.

Enjoy your lives.

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