Hi Susie,

I still feel like a newbie myself with this and you are certainly an old hand wight he years you have put it thus far with SCC! I have had my PEG since my second surgery in early February. It was painful to have placed, but luckily I was in the hospital and they had great drugs on hand. The heating pad they used was key in keeping the pain in check for me. It used heated water instead on electricity - amazing! I wanted to sneak it out with me when I left but it was connected to a machine that heated the water.

PEG for me has had some ups and downs, but I actually like it now. I had an infection that lasted about a month (staph) and once that was healed I am having no troubles at all. I gravity feed all of my liquid meals (which is about once a day as my doctors are most interested in me eating as many meals as possible through my mouth to keep my ability to swallow as long as possible). I have food allergies so the formula I am using is Isosource and to be truthful, I feel better on that than I do regular food. I am also using a product I found called Liquid Hope. It is vegetarian and from whole food sources - I am using that a s a supplement to the other. My PEG got blocked once, from using a drug to control acid reflux, and I had to go to the ER. They got it unplugged but it took about an hour of a nurse working on it and they eventually had to use a specific drug to do the trick.

As for radiation, I am a total NOOB (newbie). Only 2 in so far. I don't like them, the mask makes me claustrophobic, and I have to take meds for it. The rad tech says the lining f my mouth will start to break down next week or the week after and it will get really painful with the dental trays. I am looking for every way I can to mitigate those symptoms from a holistic perspective (aloe juice, rinsing with baking soda and salt, supplements - anything is worth trying as long as it doesn't involve voodoo or questionable substances).

As far as your oversized new tongue is concerned, my plastic surgeon (the Fabulous Free Flap Guy) said that radiation would shrink my flap down considerably. The bad thing is that I ended up biting my excess to something that had to eventually be cut out. I did it while I was in the hospital, under sedation, dreaming about beef terriyaki. I wish they had put something inside my mouth to prevent this, because now I probably have less flap than I need to complete the process without complications. Its very sore where they sutured it.

38 more rads to go, and up to 4 more chemos. So far so good.

Best of luck and happy to answer any additional questions that pop up!

Heather