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Treatment
Hi Bergit,
Too bad with increasing blasts! Is it not possible in Germany to get Revlimid, Thalidomide or Vidaza off label especially when you have tried to participate in a trial?
I don't know how the drugs are paid in Germany but I thought that you have the same system as we have in Sweden. We pay drugs up to about 180$ per year - then all drugs are free. Very good for me since especially Neupogen injections are expensive. I have of cause paid more than 50% of my income in taxes all years.
I am getting Thalidomide off label. Then I can take a very low dose and combine the drug with Prednisone for best effect. I have had 0.1-0.2% blasts in blood since dx but after one year with Thalidomide I had no blasts in blood.
If next BMP shows 5% blasts or more I think you should ask your doctor if he/she could prescribe the drug he/she thinks is the best for you.
Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006, supportive treatment until June 2010 when I started to take Thalidomide 50 mg 4 caps/week, Prednisone 5 mg/day and Neupogen injections once a week. Latest counts HGB 137, WBCs 4.2 and platelets 97.
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