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Old Sat Mar 9, 2013, 01:50 PM
Birgitta-A Birgitta-A is offline
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Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Low risk MDS

Hi Vikasgoyal,
Aranesp and other EPO drugs that should stimulate the bone marrow to make red blood cells is best for patients with low EPO initially (less than 500 - I had 800 and have never received EPO drugs). Our kidneys make EPO.

Then the drug is best for patients like your father who do not need many transfusions.

Aranesp could be combined with Neulasta or similar drugs for white blood cells for better effect: http://www.ncbi.nlm.nih.gov/pubmed/18559873

Do you know your father's EPO value initially?

As far as I understand it is OK to give so much transfusions the patient needs. In Sweden they often try to keep the HGB about 100 because that gives best quality of life and not more transfusions.

I was transfusion dependent from dx 2006 with a HGB of 70. I received supportive therapy until 2010 when I accepted a very low dose of Thalidomide + Prednisone and had a very positive response. My HGB slowly increased to 137. After 32 months the HGB was 88 and I have now started with thansfusions again. About 30 % of the patients respond to Thalodomide and the median response is 9 months. Revlimid doesn't give neuropathy and is now a more common drug for MDS than Thalidomide.

There are members of this forum that have lived very long with supportive therapy.

The best results I have seen are from trials with combinations of drugs for example Vidaza and different drugs like Revlimid or Zolinza.

Kind regards
Birgitta-A
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