Hi Pat:
I've had all sort of sores on my tongue, even though what I had was tonsil cancer - I guess it's a carry-over from the treatments. There are a number of Magic and Miracle mouthwashes that ease the soreness, and your ENT can prescribe one to your drug store if you called. My mouth stays sore most of the time, even though it's been almost 4 years since my treatments. I'm sure others will join in when they see your post, so you'll get plenty of suggestions. Hope you find one that will help.
julieann

My thoughts on the not gaining weight too soon post Tx is that our bodies are continuing to expend a lot of energy during our recovery phase (both mentally and physically) in addition to normal activities and therefore need addition fuel. Not a doctor here so keep my thoughts in perspective.

So, victory dance, no pain patches all day and eating without the pain pill before meals. Tonight, cannot warm up. Can this be a withdrawal of quitting all of the pain meds all at once

Hi Debbie,
Congratulations to Pat for getting the radiation! It sounds like he is doing really well. Simon alternated between chills where he couldn't get warm, and then heavy night sweats. He's waiting for tests to come back to see if his thyroid is out of whack due to radiation. He, like many on the forum was on a cocktail of medications, including some happy pills and the patches. His wife is a nurse and she believes his chills and sweats are at least in part to do with coming off the Fentanyl patches.

Simon is about at the same stage as Pat. His last rad was 9/11/11. He says his worst experience by far, has been the dreadful bout of constipation the first week or two after he finished. I think it's due to the Fentanyl, and even if Pat hasn't experienced it, watch for it and take preventative measures. Have a wonderful holiday !!

Thank you so much for your input, it has really helped!! I had him put a 25 patch back on tonight. Even though he doesn't need it for pain, I think he does need it for the draw down since he was on 50's.

I remember well those days of alternating hot and cold. Mostly the latter. I finished rads around the first of June and spent the next three months wearing sweaters and using blankets even during the day... and I live in Los Angeles.

Congrats to Pat and you both for getting through everything. And hang in there - things will improve!

Thank you so much David, it's good to hear that the chills are normal. We thought it was withdrawing from the pain meds to quick so put a 25 pain patch back on (he had been on 50's) Soon after we put it on the chills went away but his throat started tightening up and last night was back to the heavy mucus and was up several times during the night to gargle, and had a hard time getting oatmeal down this morning. What a see saw, so have you heard of the fentonal causing this? We took the patch back off this morning so we shall see.

How did the day go? It would seem like those would be withdrawal symptoms. It really is a roller coaster ride, isn't it? You just never know from one day to the next. We went to the docs on Monday to have the sore on Kev's tongue checked. That's really the only place he is having pain now. They did a culture on it but said they think it's normal mucositis and will heal in time. He ate a hamburger patty tonight with ketchup. First shot at a tomato based product. It went great!! He leaves for work in Alaska in 4 weeks and 3 days, so really needs to be able to eat a variety of foods. He works on the Arctic Slope. They work,sleep and eat right there with everything confined to a camp. I'm a bit of a basket case because they are all confined in this huge camp that is all enclosed and no outside air coming in considering it's 30-40 below zero most of the winter. Really praying he will stay healthy!! He usually works 21 days straight, 12 hour days. This hitch he will only go for 14. ONLY 14 after 6 months of hell. UGH!!
Talk to you soon!!

I agree and am leaning more towards the withdrawal now. Yesterday he was very nostalgic, emotional and depressed. He is still sticking to it and this morning feels more like Pat than he has in weeks. The big milestone was he was actually able to sleep in bed! The last few weeks it has been the recliner because of the mucous. I think the see saw is going to be a good one today and after the drugs are totally out of his system we will keep moving forward. He is plagued with the sore on his tongue too, I hope there is relief for that soon. Wow, I would be freaking out about Alaska, we are in Florida and Pat gets chills when it is in the 50's!!!!! I am sure he will do fine though, 4 weeks is a lot of healing time and I think our men will be back in the game totally by then!

Agreed. We have good guys that's for sure!! Kevin is ready to go back to work. He's soooo bored!
We are weaning off the pain meds too. He has only been on Lortab though. It's a liquid Vicoden basically. He's gone from 9 tsp a day to 6. Next week he will drop down again. He will have to be off of them to go back to work. Praying for the tongue to heal. The culture came back negative for infection, so it just needs time. Funny how a sore on that little thing could cause grown men so much pain!! Well...not funny really.