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revilmid

This topic has 4 replies, 1 voice, and was last updated 17 years, 6 months ago by Frankie.

Viewing 5 posts - 1 through 5 (of 5 total)

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October 20, 2006 at 3:55 am #15655

campbell
Member

Hello, I am new to this board. My husband has MDS unclassified …he is tx dependent every 2-3 weeks. He feels bad all the time with headaches and he now has a breakout of pimples on his face and head. He is 65 yrs old and was diagnosed last Nov. I know he has had this much longer than that. He is going on Revilmid and I am so worried about the side affects. Can someone pls talk to me about your personal experence with this drug. He feels so bad now…..just wonder how much more he can take.

October 20, 2006 at 4:34 pm #15656

Frankie
Member

I have had MDS-RARS with 5q deletion for 12 years now.
I was getting blood transfusions every 14 days for many years.
I started Revlimid last May and haven’t needed blood since….that’s over 5 months!
I have a few side effects but tolerable…like some bone and joint aches and diarrhea with cramps.
My RBC (Hemoglobin, Crit, etc) is way up but white count is still a bit low.
To me, it’s a miracle drug!!

Frankie

October 20, 2006 at 5:09 pm #15657

sugarwhale
Member

Dear Campbell,
My mom has been taking 10 mg. of revlimid per day. She is doing wonderfully. Her last transfusion was March 21. She will be 89 in a few weeks. True, she had a few side effects (notably, itching). But now her fatigue comes only from doing heavy yard work!
I agree with Frankie: It’s a miracle drug.
~~~ Janet

October 20, 2006 at 8:53 pm #15658

Naomi
Member

I have been on revlimid since 11/03. I recently had a set back (I think it was from exjade) but am now once again, tx free. My counts are coming back up. It has been a very good drug for me. My side effects are tolerable. I have beaten the longevity estimates with the revlimid.
Naomi

October 20, 2006 at 9:51 pm #15659

Frankie
Member

You go, girl, Naomi…..congrats!!!!

Frankie
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