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Old Sun Oct 14, 2007, 12:15 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,500
Hi Birgitta-A.

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.
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