Sun Oct 14, 2007, 07:19 AM
I am a 68 years old Swedish woman and was dx with MDS May 2006. After some time my diagnose was changed to myelofibrosis but since September 2007 I am back to MDS (Intermediate-1) again due to low WBC count. I belong to four other support groups - Marrowforums is the most beautiful and well structured of the lists:). The only discussion I miss is more reports from members that participate in clinical trials. Would it be possible to have one forum that only contains reports from AA members and another from MDS members that participate in clinical trials:rolleyes:?
Sun Oct 14, 2007, 12:15 PM
I'm glad you think Marrowforums is well organized. Suggestions like yours are welcome. We've made a few changes in the forum categories over the last year, in response to people's areas of interest.
We've always had a Clinical Trials forum. So far, nobody participating in a clinical trial has started a thread there to tell us about their experiences, but we'd very much like to see that happen. It's not hard to find raw facts about available trials (the trial's purpose, requirements, dates, etc.), but the actual experience of being in a trial can be different from standard treatments, and it would be helpful to hear people's stories. For example, patients in trials may have high hopes for good results but also concerns about higher than average risks. From what I've heard, patients in trials get excellent, personalized care and very careful monitoring. And of course they help advance science that can help other patients down the road.
At Marrowforums we have separate forums for AA, MDS, PNH, and the Bone Marrow Failure forum for other related diseases. Our other forums, such as Drug Treatments, cover all of the diseases because they so often overlap. You've seen first-hand how a diagnosis can change from one disease to another, MDS to myelofibrosis and MDS again. So until there's more activity in the Clinical Trials forum, we think it makes sense to keep it as a single forum.
What treatments have you gotten so far? Have you been looking into clinical trials yourself?
If you'd like to tell us about the four other support groups you belong to, please do so. Maybe there are others here who would benefit from knowing about them.
Sun Oct 14, 2007, 01:43 PM
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;jsessionid=7539507AB61738EA29D50737410C16F8?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:rolleyes:.
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.
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