Revlimid trials for *non* 5Q?

[deltoid]

Hello again. Some time ago I remember someone directing me to a webpage that showed the progress towards FDA approval for Non-5q patients. Anyone know where that info is?

Thank!

[Kirby]

Hi deltoid,

This link should take you to a recent Revlimid trial involving non -5q MDS patients:
http://bloodjournal.hematologylibrar…urcetype=HWCIT

I’ve been on Revlimid for 20 months, I’m non -5q.
Medicare D insurance will pay for it in my case, prior to Med D insur I had Medco and it paid also.
Some insurance companies may not pay.

hope this helps.

[deltoid]

Thanks for the reply, however the link you supplied does not work.

How have you been doing on Revlimid?

[Kirby]

Hi D,

Sorry the link didn’t work, I’ll try entering again:
http://bloodjournal.hematologylibrar…urcetype=HWCIT
It looks the same but does work on another web forum. You might try copying and pasting into the address bar of your browser.

I did very good on Revlimid at 10 mg/day for 17 months, then I had drops in platelets to 50’s. We went off for 2 weeks then restarted at 5 mg/everyother day for an average of 2.5 mg/day.

At present the counts are stable, Hgb great at 12-12.5, platelets in 55-75 range, WBC in 1.9-3.0 range.

Some long responding Revlimid patients can hold good Hgb at lower but mostly adequate platelets and WBC.

[Fahmi Choudhury]

Hi Deltoid,

My father 52 year old has been diagnosed with non-5Q MDS 1 years ago. The condition has worsened much since then. He has been on a clinical trial of Revlimid and Melphalan (low dose chemo drug) for about 4 weeks now. However, due to drop in neutrophill counts he had to stop for last two times. This is his third cycle and he has been feeling extremely week and fatigued.

I am new to this site. ANd you were the only person i found who has been taking Revlimid for a while with non-5q deletion. So i just wanted to know at the beginning did you have fatigue, dizziness or any other side effects?

I also tried the website about the results of revlimind on non 5q cells. IT is still not working. Do you think you can give me the link? Any response will be greatly appreciated. Thanks.

[sgoodman]

I have been on revlimid for over 3 years and am non 5q. It has worked fairly well and I have needed no other treatments. In the beginning, the fatigue and other side effects were more significant, although they have continued on and off. I would suggest that you try to use it for several months before giving it up, since it took four months to begin to work for me.

[billboy]

Hi Deltoid,

I was on Revlimid (10 mg per day) for about four and a half months back in 2006. I did not have the 5q deletion nor did I suffer any side effects. My hematologist simply prescribed it as an off-label usage, which is common practice in many cases.

Here’s a search link which may have the info you seek:

http://www.google.com/search?q=revlimid+%2B+%22non+5q%22&rls=com.microsoft:en-us

Hope this helps.

Bill F

[Sister]

My brother was diagnosed in June of this year. He has 5q deletion plus several other chromosome problems. He was put on Revlimid (initially 10 mg everyday, then every other day) and he suffered all kinds of terrible infections — I guess because his white cells were knocked off so much. So the doc stopped it after only 16 days of trying.
Now he just started on Decogen this week, so far no problem.

Sister

[billboy]

Deltoid,

In my above post I claimed no side effects. That was not correct (I was thinking of non-hematological side effects). Sure I had all three blood lines reduced, requiring more frequent prbc transfusions, but did not suffer any effect bad enough to require amending the Revlimid dose, like a serious infection.

Bill F

[Author]

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