Hi Zoe,
It's hard to say what was the favorite part. Meeting other patients was one of the best parts. The Patient forums allowed you to hear others experiences, treatments, etc. Then you could ask them questions later or encourage ones who were newly diagnosed.
The Doctors parts were also good. Dr. Gore from Johns Hopkins was not only informative but entertaining. He could add humor to a difficult subject.
He is working in a trail of Vidaza with a 2nd substance called MS275, it seems to help some advanced MDS patients. Another trial of Vidaza with Revlimid was mentioned, but no details.
There were several Revlimid patients who are having a good response, including myself. One man has responded for 48 months, I'm shooting to go that long or longer
. Many of these patients were not -5q, yet they responded to Revlimid, I'm in that boat.
Have you considered Revlimid, you seem like a good candidate. It's side effects are minimal and it can raise the Hgb. Mine is currently 14.5.
I feel great.
The Conf provides 3 meals a day where you can meet others easily.
IT was very professionally presented.
Hope to see you next year.