I live in Florida and had my treatment at Moffitt Cancer Center. 33 Rads and 3 Cistplatin.

Recently spent time in Baltimore and went to Johns Hopkins. I was told there that I had several Hot Spots from over radiation in my mouth and that is why it still burns when I put anything in my mouth. I went down to 104 pounds. I drink Boost, protein shakes, CIB. They put me on Gabepentin for nerve pain. Helped a little but it dries my mouth out so bad. I woke up choking at night even though I use a humidifier to help me sleep.

Back in Florida again and back to Moffitt. Basically was told there is nothing they can do for me. Stop taking Ibprofen it will mess up your stomach. I said what can i do for the pain. Gave me a referral for pain management. Well unless you have neck, back, hip, knee, joint pain your SOL. If i don't put on wait they want to put jpeg in again. That won't happened. Any suggestions would be greatly appreciated. Thanks Pattie

Pattie, Im so very sorry you are having so many of the awful after effects from your treatments. To me it sounds like its a viscous circle where everything that helps is a struggle.

Will a feeding tube make it easier for you to take in more calories? Are you able to drink the Boost Very High Calorie? If I remember correctly, the BVHC has over 500 calories per individual drink so you would get a couple hundrd more each time you drink one. You probably dont see it in carried in very many stores. It can be purchased thru the Amazon box on the right ----->

When someone goes thru what you have, gaining weight usually takes several years. Your body has so much to do to recover that it takes a very long time. Even if you take in 4000 or 5000 calories a day, your body is still burning up calories at a super high speed trying to rebuild itself. So even with those many calories daily you probably will not gain weight. It took me from Sept 2007 when I finished my rads until the end of last year to begin gaining any weight.

Best wishes with everything you are dealing with!!!

Do you think taking in more calories will help my mouth to heal anymore even though it's been quite a while since treatment ended. I really thought i would be doing a lot better by now. I must be 1 of the rare few that get affected like this from radiation. Chronic burning, pain and discomfort are no fun to live with.

To heal the body needs protein. By taking in more calories from the higher calorie drink formulas you are also getting more protein. Im not a medical professional but I think it should help with your healing.

Im so very sorry you arent doing so well!!! OC is a horrible disease with barbaric treatments. Some patients sail right thru while others suffer immensely almost right from the start. I hope you are just healing slowly and that you will eventually get to your new normal where everything is better than how it is today. Maybe rinsing with one cup warm water, 1 tsp baking soda and 1 tsp salt (stir it up good then swish for at least 30 seconds and spit it out) would help? I have to warn you, the salt will probably burn your mouth so its ok to cut it back. Just try your best to handle having some salt in there as it should help with healing.

Best wishes!

Thank you for your response. I will definitely increase my intake.

Pattie, I am a year and a half out on the chemo and radiation. Still on the feeding tube and am down to 86 pounds. I too have constant rip roaring burning in my mouth and more dry than I could ever explain. Wake up gagging as it is so dry I can not even move my tongue. Sounds like we are two in a million. Seeing my ENT next week and got my fingers crossed for some kind of relief. I'll sure let you know if he has any suggestions.