Revlimid

[LarryA]

I have just found out that I have MDS and my doctor has prescribed Revlimid. Does anyone have experience with this treatment?

[riccd2001]

Revlimid has shown good results for some MDS patients who have the -5q del condition (about 2 of 3 who were treated saw some benefit). I was on the 10 mg treatment cycle for 4 months but did not obtain a significant bump in Hgb; rather, lower WBC and side effect of being even more fatigued. YMMV but if you can tolerate the side effects, a six month period should be long enough to reflect any benefit. Good luck.

[LarryA]

Thanks, I have been warned about the tiredness.

[Anneg]

Hi Larry:
First off Welcome. I was diagnosed with MDS right before xmas. Mine is most likely different from yours. Mine is due to chemo treatments for 4th stage breast cancer. I am on Vidaza infusions 5dys at the first of the month. Was not bringing my counts up enough. They added Revlimid last month to help work on the chromozone that is bad. Other than, being tired and a little more constipated. I havent had any bad side effects. Make sure you take it the same time everyday for you to get the best results. Good Luck

Anneg
God Bless

[ron baker]

diag 8/11, on Revlimid since 10/11 w/ procrit thru 12/11 and predisone. tx every 3 weeks thru 12/11. still on 10mg revlimid and ceasing predisone in 2 weeks. hgb steady at 12. Had plenty of side effects thru 12/11, none since.

[bobweinberg]

Larry, I was on a Revlimid clinical trial in 2005. It is approved for patients who have the 5q- chromosome abnormality, which I do not have. It did not work for me and after 6 months I was taken off the trial. Do you know if you are 5q-? Has a bone marrow biopsy or aspiration been taken and a chromosome analysis done?

Revlimid works by suppressing your bone marrow, and allowing it to redevelop. The first few months your blood counts will go down, but if it is going to work, they will start going back up. For the first few days your head will itch. Ask the doctor for the special shampoo you can buy at the drug store. Also, it caused neuropathy in my feet.

[LarryA]

Thank you all for your input. I have MDS with -5q and began taking Revlimid 03/12. Initially there were some side effects — itching and hives—, but they have abated and now things are better. Last month I began taking Aranesp and when last measured my hgb was 10. We are hoping to raise that to 12 so the Aranesp dosage is being increased.

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