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Old Sun Oct 14, 2007, 01:43 PM
Birgitta-A Birgitta-A is offline
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Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Re: Reports from trials

Hi,
Thank you for the rapid answer. As far as I understand there are 484 clinical trials for MDS patients if you look at clin trials gov http://clinicaltrials.gov/ct/search;...C16F8?term=mds Probably some MDS members participate in one of them and could share their experiences with us.

One of the groups I belong to is platelet discussion support association http://discuss.pdsa.org/forum.asp?FORUM_ID=9 The site is for patients with thrombocytopenia due to Idiopathic Thrombocytopenic Purpura (a bleeding disease due to low platelets). Many patients with MDS have thrombocytopenia (low platelets) due to their disease and many develope thrombocytopenia when they take drugs for their disease. There is much info in this list about the new drugs AMG 531 and Eltrombopag. Hopefully both will be approved for the market 2008.

Then I belong to two groups for myeloproliferative disorders (polycytemia, thrombocytemia and myelofibrosis) and one for patients with myelofibrosis. None of these groups is specially interesting for MDS patients.

I have been transfusion dependent from start (May 2006) with a HGB of 7.0 at that time. Now I get Desferal for 4 days when I have got blood transfusion once a month – I could have had an oral iron chelating drug but I think Desferal is safer. During the summer I got 4 infections and my WBC count that had been 3.9-5.9 went down to 1.9. I started with Neupogen – initially 7 days a week. Now I take 3 injections a week with very good result – last WBC count was 14.5 with 11.5 neutrofil blood cells.

I have not had any symptoms at all exept shortness of breath in long stairs and steep hills initially and that symptom disappeared as soon as I got blood transfusions. Then I had infections almost without any symptoms during late summer 2007.

In Sweden I can get Velcade (bortezomid), Sprycel (dasatinib) and Sutent (sunitinib) off record and participate i trials with Revlimid and Vidaza. I dare not take any of these drugs because my thrombocytes once went down to 30 due to infections. I wait till I can get AMG 531 (hopefully late spring 2008) to protect my thrombocytes.
Kind regards
Birgitta
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