Moderator: Steering Committee
- Posts: 11
- Joined: 06 Jul 2011 17:48
Many thanks for your reply to my update posting - glad to read that you are still responding to Revlimid. Seems to be that both you and Diane are continuing to get through your bucket list OK - long may it continue! Sorry to hear about your mishap out in the Far East and I am pleased you are now over it. About your suggestions - the combination of Revlimid and EPO - I will bring this up on my next hospital appointment here in Boulogne. As you wrote - the article in Blood Journal is very technical and difficult to grasp. What I failed to mention, in my posting, was that I was invited to Lille to assess my suitability for a new trial in Sotatercept - currently being undertaken here in France and the States. Unfortunately, I received a letter today saying I was not suitable - it goes into great technical detail about why not and rambles on about my 'chromosone formula' having an abnormal clone (I had to re-run my Star Wars DVD to check up on what clones were) but that was no help! The 'Force' doesn't seem to be with me on this one. However, this will be another thing to discuss on my next hospital appt.
In the meantime, keep smiling, and I'll do another posting if there is any more news.
- Posts: 18
- Joined: 04 Jan 2012 06:52
I'm sorry to hear you were not accepted for the Sotatercept trial. My intermittent glances at the internet suggest that is one of the more promising drugs in development. I am probably stretching your patience beyond its limit, but I have just found a new (for me) listing of clinical trials. So I am passing on the détails in case it might be of interest. I expect you know the Aplastic Anaemia and MDS International Foundation website (www.aamds.org). Slightly buried on that site is a list of more than 400 trials relevant to MDS topics!! The vast majority are irrelevant to most patients, but there are a few that are interetsing to me and perhaps you. To find the list, go to About Bone Marrow Failure/ MDS/ Clinical Trials/ Finding a Trial. Then click on Studies on MDS Conducted around the World.
Anyway, Diane and I hope that the docs in Boulogne and Lille manage to find a good treatment for you. We really wish you well. Keep us posted on any developments.
All the best,
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