Any non-responders to Revlimid?

[plantcollector]

If you are a non-responder, how long did you take Revlimid before giving up? Were you 5q- or how is your MDS classified? Thanks for any input.

[sdrake]

My dad was on Revlimid for almost 8 months before they gave up on it. They kept saying "it should work". Dad was -5q, and we were so hopeful that Revlimid would be the answer. He was on Vidaza with great results. It stopped being effective after about 2 1/2 years.

Best of luck to you.

[billboy]

Hi Plantcollector,

I was diagnosed with RA in Jan 2005 and though I did not have the -5q deletion, was prescribed Revlimid in 2006. We gave up after four and a half months. My dosage was 10 mg/day. Although my counts all suffered, the main consequence was having to get PRBC’s twice as often as before. With the -5q deletion your prospects are much better for a positive response.

Hope you see marked improvement soon.

[plantcollector]

Thanks for the response from both of you. I have been on Revlimid for 10 weeks and keep hoping there will be a "sign" soon. I have not seen any statistics about how many 5q- patients have not been helped by this drug.

[elena italy]

hallo my father is 65 and has a 5q mds. we had much hopo ion rvlimid but he gave up the drug after 3 months of discontinous use and severe neutropenia because of some new genetic mutation and non benefits on the rbg and hg level. Here in europe (i’m italian) revlimid is approved only for myeloma because of some trials that could have show that revlimid could help the mds to progress into leukemia. we hope that as soon as possible these studis can make some clearness. As you asked me, there is a 25% of non respondent to te therapy but also cases of tardive response also after months from interruption. i’m looking for some help and discussine froma european patients if there are any!!

[plantcollector]

Elena, I hope you can get some information from any European patients. I have no idea about a study that showed Revlimid would have a effect on MDS becoming leukemia. I do know that some 5q- patients do not respond to the drug at all, but a large majority do. I was finally showing a sign that Revlimid might be helping my hemoglobin, but this week I had to discontinue taking it for two weeks. I have developed blood clots in my right leg, so now I am being treated for that. I do know that there is a long range of reponse time on those who are 5q-. I have seen the range printed somewhere, and it was from 1 week to about 39 weeks. Hope you find the information that you are seeking.

[elena italy]

Hallo don’t worry about therapy interructions it’s usual with revlimid to give up for some side effect and then start again and it doesn’t have any influense on the respons itself. the most frequent thing that can induct interruption is neutropenia but it is only for the first period. i hope you find a great help from this medicine, if you want read some interesting news you can check out the a.s.h. web site with the abstract of the last congress in s.francisco in december 2008. best wishes

[plantcollector]

Thanks for your response Elena. I have been off Revlimid now for just two weeks. I do think it was starting to work. Hope to go back on it soon at the lower dose of 5 mg. I had to have two more units of red cells last week when my hemoglobin dropped to 6.4, but it was up to 9.0 yesterday. First number that high since last Fall. Even with the two units added that 9.0 is a little high, so the Revlimid might still be having an impact even though I’ve been off it for two weeks. Hoping that’s so. Hope your father is getting the care and advice he need. Good luck to him. I’ll be thinking of you.

[czaring]

My mom has done 2 short stints on Revlimid. In both cases she was taken off because of the allergic response she suffered. She experienced lots of itching and breaking out on her scalp. She was uncomfortable on it. Her Doc looked into the advice on a national level for those who might be allergic and the advice was to get off of it and maybe try some techniques to desensitize her. She was on 10 mg daily … then they went to every other day. 2nd time around she was starting with 5 mg every other day. Both times it knocked her platelets and white cells down to the bottom of the barrel. But she did have some red blood cell markers recover after the first round and stay up for about 4 months or so.

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