I am curious about how long it took for your dry mouth to significantly improve after going through radiation for your tongue cancer. I finished my radiation 8 months ago and the dry mouth has been horrible. Any advice?

I have been suffering from horrible dry mouth since my radiation ended in August. So much so that I am unable to eat alot of things and I have no appetite at all. Do you suffer from dry mouth during the day and if so do you find that the mouth tape has helped in that regard. I feel very frustrated by this particular side effect and medication is not working at all.

I'm new here. I finished radiation Rx for my tongue cancer August 2nd and, so far and PET scan, I am free of any cancer. HOWEVER, I cannot get riid and no relief at all from dry mouth and loss of appetite. Pre-cancer and a healthy 71 yaar old retired and married male at 180 pounds I can barely get over 145 pounds. Any 'human food' except soft boiled eggs or high caloric blended drinks has no appeal to me at all after the first lor second bite, yuk! Any help or recommendations. Mu oncologist just says be patient plus we tried something called Pilocarpine 5mg times four a day and nuttin. Help!

Nick14

Hello Derek,

Sorry to hear you had a recurrence and woke up from surgery without knowing what was possibly or likely going to be the outcome.

I never would have imagined they would skip over those possibilities when they were discussing it with you before.

I mean mine was tiny, but I told the surgeon I understood things can change when they have you on the table, and I was of the mind to "get it done" whatever it takes, despite a planned very minor surgery in my case.

Now having read your story, Nel's and other's I am trying to catch any possible recurrence super early so the next surgery is equally minor and just another small chunk of tongue.

I would have no idea what to expect for something like what you guys went through, and if my medical team didn't pound it in my head and prep me mentally for what to expect, it would seem kind of like getting hit by a train, getting knocked out and waking back up with half your body not working.

I hope you are adjusting well, living alone and dealing with all of that, THAT I can't imagine. Glad you found some local support, and hopefully you keep expanding that circle of support.

Sorry you have had such a rough go with follow up and post operation care, but that lymphoma clinic and PT sounds like a Godsend, hopefully you can cling on to them and find others like that.

COVID and recovery with all the complications...ugh...I salute you sir! You put up the good fight and made it through.

I hope you readjust and find a good quality of life, Nels talks about how we was able to gradually reclaim a pretty active life and thrive, and can figure out how to remain vigilant, without letting the worry take away from living your best life each day.

Take care of yourself, and I wish you the best.

R/
CQ

Hello M,

I am so sorry to hear of your recent cancer diagnosis and surgery. My SCC was stage 4 on my tongue and in one node. I chose to do radiation and no chemo as recommended by my oncologist. I was told my chances of it coming back dropped in half if I did radiation. I did some research and found a few articles that backed this up. Unfortunately, I do not recall how/where I found them, Mayo Clinic website? or this website or ? or National Cancer Institute?

Sounds like you are aware the side effects from radiation are significant. They are getting better and supposedly proton therapy has less side effects.

I received standard radiation treatment and now nearly five years out have had lots of root canals, starting a bridge install tonight, saliva is enough to eat crackers again, food mostly tastes normal..in other words, I have most of my life back. I feel better than ever, to be honest, but I think that is just because I am more grateful for every day now, and my faith is on full blast these last five years.

Wish I had more info for you on this. Tough decision. I do know of one patient that chose not to but the oncologist was not pushing it and they were stage 1.

Hopefully others will jump in here.

Stay safe and keep the faith,
Nels