Brian, I would be willing to do some advocacy in this area, Erik's job is dependant on flying around the country, and he is very worried also. Do any of you have any ideas who I could contact with to begin a push for people with dysphagia and xerostomia. I am looking in the OFC site and elsewhere for more information regarding these issues that I could possible relay to them as well. I will be in contact with our radiation doctor too. Any tidbit of who I can contact would be appreciated.
Jennie


Caregiver to Erik -1st DX 12/22/2005 SCC of Tongue, T3N1M0, hemi-glossectomy,60 nodes removed, carboplatnin,Erbitux, 35Rads.
Reoccurrence T1N0M0 4/14/08-partial glossectomy-16 weeks Erbitux and Taxol-
3rd reoccurrence 5/18/12- partial glossectomy