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Problems With REVLIMED

This topic has 3 replies, 1 voice, and was last updated 17 years, 5 months ago by niol.

Viewing 4 posts - 1 through 4 (of 4 total)

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November 21, 2006 at 3:09 pm #16119

niol
Member

My wife started on REV for about 5 weeks. Her blood levels continued sliding downward but appeared to near bottom when her platelet level nosed dived. The Doc pulled her off the REV 1 1/2 weeks ago but her platelet level kept sliding to 14 last Friday. They gave her a unit of platelets and yesterday the platelet level still was at 14. She is getting a second unit of platelets as I type this. Sadly nearly all other areas in her CBC have fallen since Friday. Is this the Revlimed still in her system or is something else going on.
Any info would be a help as even her doctor is perplexed.
You can email me at niol@aol.com with your thoughts as I do not get on here but every couple of days.

Thanks to all

November 21, 2006 at 7:30 pm #16120

Carl
Member

ED,

I had pretty much the same response but not nearly as bad as your wife’s. I was on the bigger dose and then the smaller dose for a month each and my counts went south as well. I felt TERRIBLE, like I was going to die or something and the Hemo took me off of Revlimid and said that I should not restart it. My counts very slowly rebounded but not to the pre Revlimid levels until I started Dacogen treatments about 8 months later. Be patient and get weekly CBC’s to check her blood counts, especially the RBC/HBG and platelets. I hope this helps.

November 21, 2006 at 7:49 pm #16121

stacey
Member

Ed,

My own impression was that revlimid could stay in your system for up to 4 weeks after discontinuing use. This was never expressed to me by a doctor, however. It was from reading the literature concerning revlimid on Celgene’s website. There are several references related to “4 weeks” after discontinuing use of revlimid; for example, do not donate blood until 4 weeks after stopping use of revlimid, etc. I assumed the medicine could stay in your system that long after stopping its use. Hope that information helps.
Also, I’m very sorry to hear that both your wife and Carl had problems taking revlimid. I hope you are able to find success with other treatments and wish you all the best.
-Stacey

November 21, 2006 at 8:09 pm #16122

niol
Member

I had read the same info and feel much like you that in four weeks the med is out of your system. The Doctor at the IU Med Center that is in charge of their MDS program told us if Rev. does not work for her that she wouuld be BMT person. With her age of 55 and no other health issues that her best chances for long term and cure would be a BMT.
I just hope we are near the bottom and with fusions that we can get her level up to a point we can try either some other med or move on to the BMT.
Thank both of you for your comments. Oh, how do you put the tag at the bottom of your postings?
Ed
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