Hi. Boy have I been where you are. It is so extremely frustrating! My husband refused to have the PEG put in when we initially met with his doctors. His ENT, RO and MO all insisted and John agreed but swore he wouldn't need it or use it. When things started getting really bad around week 3 he started to use it a little but not as much as he should have. He continued to loose weight and feel lousy. He was on both Zofran and Compazine for the nausea and gagging. I finally sat down with him one day after many days of bribing, begging etc. and explained to him that his body couldn't fight the way it needs to without the proper hydration and nutrition. Luckily that seemed to work and he started using the PEG. Even with the PEG in he lost 30 lbs. John hates hospitals and I think the thought of having to be hospitalized for hydration or nutrition also got him using the PEG to avoid that.

John hates pain pills and got through treatment without any but the PEG was a lifesaver. He had the PEG removed 2 1/2 months after treatment ended and has regained all the weight he lost. smile We are here for you!

Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2