5q- & Darbopoetin

Posts related to the sub-type 5q deletion

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WrightM&G

5q- & Darbopoetin

Postby WrightM&G » 27 Jun 2012 13:42

Can I be contacted by somebody with 5q- RAEB who has had treatment with Darbopoetin? How often do they take it and how long have they been on it; how long does it work?

Is there anybody who has been on Revlamid for 5 years+ and how do you feel> How has your life changed?
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Re: 5q- & Darbopoetin

Postby sophie » 24 Oct 2012 12:56

Hello,
sorry no-one had replied to you yet.
It may be that nobody on this forum has used revlimid for 5 years - as it has not been available widely in this country for that long - and usually only as part of a trial.
However, I know of MDS patients in the UK who have had Revlimid for at least 3 or 4 years.
I also know of MDS patients in Europe who had Revlimid for definitely 5 years.
Then you can also use the MDS Foundation discussion forum - where you can find many american patients who have use Revlimid for a number of years - as it has been licensed in the USA since 2006 - and would have been used in trials even before that.

Hope this helps. Do not hesitate to call us if you wish more precise information.
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.

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