Hi Laura:
You will find everyone on this site very helpful & caring!

I will share my Amofostine experience with you. I was diagonosed in January with base of tongue/floor of mouth Squamous Cell after sporting ear aches/and a lesion for several months and two negative biopsies. I had a neck dissection in February on the right side with removal of part of my tongue, floor of mouth, tonsils, and right side saliva glands & lymph nodes. (just to be sure) My ENT told me at that time that the remaining saliva glands would help compensatefor the loss. (something for you to discuss since your cancer is in your glands)
Everything went well enough and I recovered very good. Got back to work, was eating very well, basically back to normal.
Then, in between follow up visits I starting getting that soreness and spasms in my tongue again. I went back to my ENT who was very glad I responded immediately. He scheduled me for an outpatient biopsy where he could put me out and really get a good look while taking a biopsy. The biopsy was negative but my ENT wasn't satisfied with that. He referred me to another ENT who only sees cancer patients and performs surgery.
My new ENT scheduled a PET/CT which revealed a new tumor on BOT, now on both sides. He suggested that we proceed with Radiation & Chemo prior to another surgery. My RO suggested the Amofostine since I had already lost the right side glands and they were radiating both sides. I was told (as well as witnessed it with two other patients I made friends with during treatment)that not everyone could handle he shots throughout. They started the shots going into week 2 of radiation, 3 times a week (not every day). They also prescribed Zofran (anti-nausia)to take an hour prior to the shot. I really done ok with the shots until I got into my sixth week of radiation. At that point I was getting very sick, but it was not clear if it was the shots, or just the accumulative effects of radiation. The one thing for sure, at that point my Wife asked my RO why my neck, jaw, and chest was so "sunburned" but I had no evidence of burn around my cheek bones. He said "that's the amofostine shots doing thier job". That was enough motivation for me to make it through the last 5 shots I was to get. I have good saliva and my RO told me it will continue to improve for the next 6 months or so.
Hope I wasn't too long winded here. :-)


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****