I'm looking for stories, of you or someone you know, what therapies worked or didn't and side effects of those therapies. Of particular interest to me are people who have had nonsecretory myeloma with kappa light chains and abnormalities on chromosome 13. I've already done the searches on studies on Medscape and Google Scholar; I'm specifically seeking actual cases. I hmedscape searchave a friend who was just diagnosed 2 days ago and I'm gathering info for her. I am also interested in complementary therapies, including prayer.
I would suggest that you visit the online groups that are specific to this disease. This is a general board and you may or may not run into someone with this.
IMF: International Myeloma Foundation
Multiple Myeloma medscape searchResearch Foundation
Myeloma Mentors
Also, join the ACOR Listserv group as you have a better chance at locating someone with this specific disease or they could point you in the right direction:
ACOR: Multiple Myeloma Support List
Good luck in your research.
Thanks, Panda. :)
No comments:
Post a Comment