Revimid and MDS

[John in GR]

One of my sons, Jeff, is a third year resident in internal medicine here in Grand Rapids. Recently he attended a “Grand Round” which is a meeting of local doctors featuring a presentation by another doctor. The presenting doctor was a doctor from Mayo Clinic who specializes in myeloproliferative (MDS type) diseases.

This doctor indicated that there has been some promising research re the treatment of MDS w Revimid (aka Revlimid), which is a new and improved version of thalidomide. According to this doctor there was a 67 % response rate. Response rate was defined as a raised Hgb of at least 2.0 or going from transfusion to non transfusion dependent. Supposedly, this may be generally available later this year.

I do not know any other info such as how long the response typically lasts etc., and I haven’t tried to research the matter further. I’m simply presenting this as something that might be out there and worthwhile considering.

John

[Terri]

Thanks John for the updates

[Naomi]

Hi John
I am on revlimid. Have been on it since Nov 03. Will be taking it until Nov 05. Last tx was Dec 8,2003. AS my doc says, I am one of the “poster children”. There are side effects, as with all meds, but I seem to be handling them.
Will not know how long it lasts until I go off it.
Naomi

[John in GR]

That’s excellent news, Naomi. Have you experienced side effects?? How often do you take it?

John

[Naomi]

Hi John:
There are a few side effects. Some of them sort of came with the MDS for me. I have diahrrea, but is controlled with imodium. I do have some neuropathy in my hands, but still have all the feeling. They just tingle all the time. I also have tinnitus, which I have always had, but it is more noticeable. Some of the things are results of aging, but I can blame them on the MDS or the drugs. Makes me feel a little bit better, as I do not consider myself old.

:rolleyes:
I take a 5 mg capsule daily. Started out with 10mg, but was too much for me and reacted to it.
Naomi

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