Paul - I was radiated both sides, more on tumor side of course, as right side basically got no sunburn. And all my mucositis is left side, adjacent to where the largest tooth fillings are, even though I used double dental rolls between teeth and tongue everyday.

That's fantastic! Maybe the dental rolls helped? I did radiation alone, bilaterally, my first go, and after the 2nd week, relied on the tube after mucocitis, thrush kicked in, and used the tube for about 7 months, although I think, well was, already compromised from chemo, a year prior. My burns weren't that bad, and used Aquaphor. Currently using Cetaphil. .

How long have you guys seen mucositis last after treatment? I got it one week before treatment ended and still have it going on 3 weeks post treatment.

It's only in one area, left side of tongue toward the back of mouth, beside my molars.

thanks

Three Weeks Post Treatment - Things continue to improve slowly.

Neck sunburn - on left side of neck is for all intents gone. Sometimes I forget to use Aquaphor, but I seldom miss more than one day. The skin feels normal to the touch.

Hair loss on back of neck - still there. It doesn't look like it's started to come back yet.

Weight - after losing several more pounds in first two weeks post treatment the weight loss stopped this week and I actually came back up a pound or two. That's probably because I'm eating two meals of regular food a day now and Ensure pretty much only at lunch. It helps that I bought a good digital scale, weigh daily and keep a written log.

Taste - another cancer survivor told me taste will return like this; you can taste the first bite, but after that it goes away again. Sure enough she was right, but ohhh, that first bite of dessert tasted SO good.

Mucositis - I think the mucositis is going away, but it's been replaced with another case of that viral cheek infection that I had at beginning of treatment, the one that makes your mouth taste like your sucking on a copper penny. Before, it wasn't bacterial as nothing grew on the culture. It is a little painful, but not as bad as the mucositis was. I still use lidocaine as a swish (no swallow), but I don't have to use it as often now.

Rope mucous - still got that too. I thought it was getting better, but it came back. It feels like my sinuses drain into throat and then dry into a hard lump. Gargling with warm water helps soften it some so I can hack and spit, but it takes LOT of hacking to get it all out. I've gone back to using Mucinex daily to help with that.

Things are getting better slowly, I suppose the big change this week was going back to eating regular food, though most of it I still can't taste. I guess I just got tired of so much Ensure.

Tony,
Try swapping the Ensure for whey protein powder. It has as much calories and much better for your body to repair itself. Proteins are the building blocks of your body. Look at the Ensure, most of it is carbs but some are somewhat balanced.

Just like any bodybuilder gains mass and muscle with protein, carbs provide fuel but protein are the building materials.

All through treatment your body is under assault and extra protein is what it needs the most.

Glad things are progressing well for you.

Don

Keep up the good work!

For at least the next full year you should take in the daily minimums to help your body with recovery. The sense of taste is a funny thing, it will come and go. One day you will discover a new food that you can actually taste and the next day that same food is the worst thing you ever tasted. In time you will gradually regain your ability to taste more than a couple bites.

Hows your energy level?

Hi Christine:
My energy level is as good, it was also good all throughout treatment. I still take a nap every day, but only one.

I'll try switching to the whey protein powder some.

thanks
Tony

Hang in there! Tim is saying that his taste buds are back at about 50%. He is trying EVERYTHING and the wonderful look of surprise on his face when he actually can taste it is priceless!! Looks like you too have had similar treatment experiences so I thought this would be of encouragement. Around December 19th he decided to load up his plate with bites of many different food, and much to his surprise he could taste many! Each week it seems just a little better! Still has an ensure shake once a day to keep healthy! He still has the dry mouth problem but it too is getting better!

Four Weeks Post Treatment- Tomorrow is 4 weeks since last treatment. It will be a busy day so I'm writing this the night before. Everything continues to improve.

Skin burns on neck - are gone, back to normal appearance, been wearing shirts with collars now for 2 weeks.

Mucositis - hasn't been bad this week, much improved over last week; haven't needed any lidocaine in maybe 3-4 days.
Still have that copper penny taste in the mouth, particularly after eating, but a tooth brushing takes care of it.

Rope Mucous - still have some of that, but it's not as bad as it was. I think that Mucinex tablet every morning is helping with it nicely.

Taste - I think some taste is coming back, enough to make me want to eat normal food all meals now. Haven't had an Ensure in maybe 3 days. And with eating normal food the weight is coming back, have gained maybe 3 pounds since last Friday.

Things are improving nicely, have my 30 day checkup with the RO on Monday.

I hope all of you have a great weekend, temp is going down to 11 tonight, so it will be cold tomorrow, but I won't miss opportunities to go to dance club.

Tony

sounds good.