Quote:
Originally Posted by Birgitta-A
Hi Bob,
Very positive with John Hopkins!
You know I started treatment with Thalidomide + Prednisone 2010 when I had to have blood txs every week and my dysfunctional platelets were 22. My HGB very slowly increased to 13.7 and my platelets to 112. I had to continue with Neupogen twice a week the firsts years.
Feb 2013 I had to start txs again and this time I have much more hemolysis than I had before. We tried to increase Thalidomide from 4 caps รก 50 mg/week to 50 mg/day + Prednisone 30 mg/day (tapered during 3 months) without positive effect on the HGB. The platelets have increased to about 180 (very high for me).
Last week I started with Revlimid 5 mg/day + Prednisone 30 mg/day. Then I take Neupogen once a week. I don't have the del5q chromosome aberration.
It is not common that MDS patients get Prednisone when they start taking Revlimid but since both patients with Myelofibrosis and Myeloma always combine Revlimid with steroids for better response I asked my doctor if I could try that.
It is too early to know if I will respond - in fact I have read that non del5q patients without any chromosome aberrations will respond much better than patients with other chromosome aberrations (I have del12p and X-).
Hope they will find a treatment that will work for you!
Kind regards
Birgitta-A
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Thank you Birgitta. Your post gives us hope. When Dean was on Revlimid, he wasn't taking any other medications. He was only on it for two months, the end of last year, when his counts began to drop and his oncologist took him off of it.
You give us back the "hope" that we need right now. Thank you.
Love and hugs,
Patti and Dean
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Dean,age 76, dx MDS, RAEB-2, 17% blasts, June 2012 - May 2013 - Dacogen with Neupogen and transfusions as needed. End of May 2013 Dacogen stopped working. BMB July 2013 shows RAEB-2 and severe Myelofibrosis. Passed away September 30, 2013
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