[Patsi]

Hi Lizy,
I had your same symptoms for years. I wish someone had recommended a bone marrow biopsy sooner. As soon as my new oncologist/hemotologist did a biopsy I was diagnosed with MDS 5q deletion in December 2005, and less than a month later the FDA approved Revlimid. I am in the Rev Assist program and have not had to have any blood transfusions. I am one of the fortunate ones and at this point taking 5mg Revlimid every other day. Although there have been times that my WBC’s and Platelets have been low, currently all my levels are in the “normal” range. My sister died of leukemia, which presented first as MDS 10 years ago. New medications and DNA research etc. has come a long way in 10 years. Take care.
Patsi

[Patsi]

This is my first post. I was diagnosed with MDS -5q 16 months ago. I was very fortunate that just weeks after I was diagnosed the FDA approved Revlimid. I was put immediately on the Rev-Assist program. The side effects have been low WBC and low platelets. My WBC is up now and the platelets, which are always low, are not dangerously so. I grew up in Iowa in the midst of chemical run off in the water. Our water was always suspect, they would just lower the standards if it got to a place where it wasn’t meeting the safety standards. My sister died of a myeloprolific disorder 10 years ago.

[Author]

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