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Old Sat Aug 27, 2011, 02:49 PM
freedom99 freedom99 is offline
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Join Date: Jun 2011
Location: Leamington, Ontario, Canada
Posts: 40
Treatment Change

Hi Gregg;
I've had a little experience with Revlimid and will look at some of the connections I had on line. I know in Canada Rev-Aid has to administer the dispensation of Revlimid. The are at: http://www.revaid.ca/revaid/Default....ookieSupport=1
Yes, the platelets can be reduced for a period of time and then stabilize. Our doctor was going to go ahead even though my wife's platelets were at 5-10. This decision was because with the 5g minus it seem the best and only option. With MDS 5gminus the tests have shown a good response from Revlimid. I think it's definately worth looking further for Revlimid.
Your platelet level should withstand the Revlimid hit on the platelets.
I've read somewhere deep in the online info that a platelet level of 5 with MDS can be a maintenance level with no bleeding. Is that hard to believe? My wife has been at 5 many times for weeks at a time. At the same time the bleeding issue can happen at different levels for different people.
Revaid indicates that Revlimid should be stopped when the level gets down to 50 and started again when it gets back up.
As you can see, a lot of conflicting info. I gave my concern in regards to the platelets to my doctor who then decided to do another bone marrow biopsy. With the results of increasing blasts she decided to go to Vidazza instead saying that Revlimid wouldn't touch what my wife had.
The Vidazza did very little but then it was done for only three months.
Was my doctors response a due dilligence response to my concern? I don't know.
Revlimid cost to us would be $10,000 a month with several plans covering everything except $1500 in a year. The only question is if the Revlimid would covered if the 5gminus was not there.
Sorry for the rambling.
Vidazza was administered in hospital as injections and was fully covered by the Province of Ontario.
It's not a clear and friendly situation with these diseases and doctors who often do not know because research on MDS and the sub-types is still limited compared to other diseases.
__________________
Wife 63, June 2010 MDS (refr anemia - excess blasts type-2) PLTs 11,000/μl with giant forms 2 TF/wk. Hgb kept at 80g/l with 1TF per 2 weeks. 9% blasts 2 cytogenic abnormalities del(5)(q22q35) + inv(20)(p11.23q11.21) 3 cycles Vidaza no effect. June 2011 to AML WBC to 67 blasts and Aur rods in blood.
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