John,

No chemo?

No chemo. My radiation is just sort of an insurance policy. At least that's what the surgeon said

I also had radiation only, no chemo. Yesterday was 4 weeks from my last day of RADS. The first 2 weeks I thought I had this thing in the bag but it hit me like a ton of bricks. Sores in my mouth, anything that came in contact with my tongue felt like a razor blade, loss of tastebuds except for chocolate, coffee and peanut butter. I lived off of oatmeal with calorie supplements and Chocolate ScandiShake that had 600 calories when mixed with whole milk. They were the only things I could get down. My saliva was so thick I couldn't even drink Ensure. My neck and lower mouth looked like one nasty sunburn and hurt like a 'rhymes with witch'! By this time it also hurt to swallow. I'll never forget the day I went in for treatment and burst into tears because I was in so much pain thinking I had to just endure this. Boy, did I feel silly when they told me I could take painkillers. I was not a happy camper in the least when I realized I was losing hair on the nape of my neck after growing it out for a whole year. I also lost my voice for 3-4 weeks which didn't really matter because it hurt so bad to talk anyway. I got a long weekend before my last week which they sprung on me, a "tongue boost" is how they referred to it. 4 weeks out and I'm finally really starting to taste again. I get sores in my mouth when I eat but they eventually go away in a few hours. But it's that "hurts so good" mentality because I was so hungry for so long, lost 25lbs and have only managed to gain 3 back so far. Anyway...that was just my experience. Everyone's different.

MissB

Also, wearing my fluoride trays (sans the fluoride) during treatment helped with the sores I was getting on the side of my tongue.

MissB

One thing I hear constantly but never explained in detail is the 3-4 weeks after.
Does it continue to get worse for 3-4 weeks after? Or are you at a stand still for 3-4 weeks before it starts healing? Or does it take 3-4 weeks from the last treatment to heal. I'm just so confused and would like to know what's coming.

Take a look at the above post from MissB, it tells what she went thru during the end of rads and the first couple weeks afterwards. This is what she experienced, everyone is different. It can take up to 2 full years to completely heal from radiation. Most patients are doing pretty good after 2 or 3 months post rads. Try not to worry about what could happen, focus on your nutrition and hydration. Bottom line is the better you do with your nutrition and hydration the easier everything will be for you.

You can't not worry about what might happen. No disrespect but that is ludicrous. I was in pain, constant pain for 3 months before my surgery, then I was in worse constant pain after my surgery, then when I healed from that everything went backwards and I'm in constant pain again. All I can think about is when I'll be able to talk again without being in pain from moving my tongue, when I'll be able to sing again, if I'll be able to sing again. This whole process has done nothing but taken my life away little by slow and I just want to hear other people's experiences so I can be motivated to get my life back.

Ok...I guess the way to say this is that what you are experiencing is completely normal, even the pissed off part. We have all been there and are telling you with much confidence that it will get worse before it gets better, but it does get better. You may very well get to a point where you cannot swallow for a bit so that could be tough without a PEG. On the other hand, Kevin had a PEG and hated it so forced himself to swallow through the pain. He would drink some Lortab, use his magic mouthwash and chug a couple of Ensures. And he drank water all day long in little sips. He drank at least 48 oz of water a day. I think it started to get better about 4 weeks out because I remember he ate Thanksgiving dinner, pie included. It was with drugs and didn't taste quite right, but he ate it. There were other times later that he had to go back to the Ensures for a bit.
I hope this helps a bit. It is just our experience, but I know of 2 other men whose wives I have become friends with that found sort of the same situation. That doesn't mean it fits everyone though.
Have you gotten checked for the yeast infection? It might be a pretty easy fix to part of your tongue issues, but you won't know if you don't get it swabbed.
Hang in there. Again, hope this helps a little.
Kathy

John - what are you taking for pain now? Aside from pills?
I have been where you are.

John Christine is right - no one can tell you for sure as you're an individual and everyone heals differently and has a different experience - knowing what's to come is kind of impossible there are any number of things that can go down that will effect your healing so worrying about it is pointless because it may never happen or you may experience something none of us have ever had - though that's unlikely considering the collection of experiences here. mind you being informed doesn't hurt...
I personally had it easy..( and despite this it was no picnic) I was bad the last two days of radiation and over the weekend prior to the end of treatment - my radiation ended on a Tuesday - I hibernated took my pills and got through the rest of the week... Then I started to feel better. Very slowly. At one point swallowing and the post nasal drip felt like acid hitting the back of my throat, I remember a couple of weeks out cringing because I knew what was coming when I swallowed and miraculously it didn't hurt.
From that point it was all steady improvement... Though I'm a year out and spicy food still causes trauma as does anything acidic - and tomatoes only now are becoming friendly - and i dont di carbonated anything - and let me repeat - for as bad as it was, i was lucky! People get thrush, have chronic pain, permanent taste damage, tongue necrosis, osteo necrosis! Trismus, swallowing defects etc... No one can tell you - and no one here can say, don't worry two weeks after you will be better - that could very well be a lie... You could still be feeling super crummy - its all about you, your immune system, how you heal, your nutrition, even your outlook. You know your body best... Drs. Don't tell you anything because they don't know either - they they can only give you the average, the plus to being here is that we're honest about it and can tell you what we've been through but you will write your own story.

Good luck - it will get better