I took part in a NCI focus group yesterday. I'm glad I did and hope I was helpful. Admittedly I was running on empty though. I had just gotten home from spending 15 hours in the ER with my Mom.
This post-treatment sickness thing is pissing me off. As if cancer and its' treatment isn't difficult enough. Arrgh. Brian, thanks for letting us know about these groups. I think there's a lot of good info that forum members can contribute to NCI.

Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.