MS T,

I'm so glad to hear your husband is getting the PEG tube. I would not have fared anywhere near as well as I have without it. I think of mine as a tool, like a cane or even a vacuum cleaner - I hate having to use it, but recognize its necessity. I had no trouble staying hydrated during treatment and once I started using it, I lost no weight at all. I did receive extra weekly hydration after week 4, in addition to the hydration I received during my chemotherapy, but that was to keep nausea at bay. I did follow faithfully the recommendations of my nutritionist and my swallow therapist and made sure I was doing my jaw stretching and swallowing exercises and I cannot stress enough how important these are!

Now that I'm transitioning off the tube, its still great to have since my tongue continues to be raw and sore. I know that even when I'm having a "bad tongue day" I can get the nutrition and hydration I need.

I think if your husband is as stubborn as I am, he'll be fine.

- Margaret

Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018