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Dear Flowerlady
Sorry to hear of your difficulties, MDS is a mean disease. I've been on Revlimid for 13 months, was on Thalidomide for 2.5 yrs prior to that. I'm doing great at present.
You havn't mentioned your Hgb or Rbc. Normally a normal Hgb will not result in shortness of breath. When my Hgb was at 10.7 I noticed my breathing rate was higher for normal exercise. At the mid 13's Hgb presently I have no shortness of breath; however, I find I tire much faster than before I had MDS.
If I work "hard" around the house in the AM, I'm usually tired by mid afternoon.
Have your counts improved on Revlimid. My Rbc and Hgb improved almost immediately; however, the platelets and WBC remain a little below the normal lows. This is a characteristic of Revlimid.
Hang in there and let the Revlimid work for you.
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Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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