Thread: EPO worries
View Single Post
  #14  
Old Tue Sep 24, 2013, 08:03 AM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Thalidomide and Revlimid

Hi Mseth,
You know the first 4 years (2006-2010) I had MDS I only accepted supportive care because I am so afraid of adverse effects.

June 2010 I had to receive blood txs every week, my ferritin value increased and my dysfunctional platelets were only 22. I was afraid of having a stroke so I accepted to try Thalidomide with very good response. My HGB slowly increased to 13.7 and I didn't need transfusions. (I had been transfusion dependent since dx). I have neuropathy but that started before Thalidomide treatment.

I never thought I could stop treatment because there is no cure for MDS patiens (yet) except SCT and I was too old for that treatment at dx (in Sweden).

Then my HGB slowly decreased and July 2013 I started to take Revlimid + Prednisone. I still don't know if Revlimid is working for me because I take Prednisone 10 mg/day.

I feel OK as I have done since dx - I have only felt ill once and that was when I hade neutropenic fever (almost sepsis) 2007. After a few hours with antibiotics I felt fine again.
Kind regards
Birgitta-A
Reply With Quote