Hello, I am looking for some advice on things I can suggest to my Dad to help with the pain and discomfort of the radiation burns inside his mouth. It has been 5 weeks since he completed treatment. He is healing but very slowly, he was told his burns were some of the worst they had seen in quite some time. His saliva glands were damaged so he is also experiencing issues with that. He is not able to eat anything more than Boost, a meal replacement shake, everything irritates the inside of his mouth and throat. He's a diabetic so many of the smoothies and ideas I've seen on other websites aren't useful to him. He is also quite stubborn and lives 5 hours from me so I can't be there to help him as much as I'd like. If any of you have suggestions of things that helped you they would be much appreciated. I know he has pain medication, but I don't know what it is exactly. I read on another post something about hyperbaric oxygen? I may have that wrong but it was apparently to aid in speeding up healing? Any advice you can give will be helpful, thanks in advance!

Hi Sarah,

Sorry to hear your Dad is hurting. We've been there. Along with pain meds, "Magic Mouthwash" is recommended. It's a solution he can swish around his mouth and swallow. It numbs things up nicely and gives you a window to get some food down. He should be rinsing with a solution of water (16oz), baking soda (1tsp), salt (1tsp) and glutamine (5g optional) 4-6 times a day. The key is to stay ahead of the pain. Don't let it get to the point that you're really hurting before you take it.

The HBO treatments you read about are typically used to treat healing issues with post treatment dental work.

Positive thoughts and prayers

"T"

Welcome to OCF! Your father should be on some type of pain meds to help him manage the pain. Many of us have used magic mouthwash to help numb the mouth so we could eat. Its only temporary and will need a prescription to get it at the pharmacy. Magic mouthwash should be swished and spit out, swallowing the formula can numb the throat and he could have issues with choking. Magic mouthwash can have a few different forumals too so thats why some are told to swallow it and other to spit it out. My MM was made up of benedryl, malox and lidocaine.

Hyperbaric oxygen treatments (HBO) are not normally used to recover from chemo and rads. Its most commonly used to prevent osteoradionecrosis by doing 20 prior to and 10 after any dental extractions (Marx Protocol). After rads it can be pretty common to have patients have dental issues and need to have teeth removed.

Time is what it takes to recover from what your father has been thru. Keep up at least 2500 calories every single day and at least 48 oz of water daily for the first year after finishing treatments. It really does take a year to bounce back. Most patients are pretty good 3 months post rads, even better 6 months post rads. It can take a full 2 years for a complete recovery. The sense of taste will come and go for months. Some patients notice subtle changes even 2 years post rads. At that point, its pretty much as good as it will be.

Many patients become frustrated at the speed of their recovery. It can be very disheartening to try and try and still not be well weeks after finishing rads. Adding some high protein whey powder to his diet can help speed heeling. But really good nutrition, water, sleep and time are what it takes to heel. He has been thru alot and his body not only fought the cancer he battled the brutal treatments as well so it will be a while before he is well again.

Best wishes with your fathers continued improvements.

Make sure your dad lets the doctors know he is in pain. They may need to increase his dosage, I know I did a few times. I had a long acting (extended release) pain med and one for breakthrough pain (could take before eating).

Yes 5 weeks post rad and still mouth sores...he needs to go back to his rad doc. He needs pain meds so he can swallow better and yes to what Christine says re calories.

There also could be a coinfection, bacterial, fungal or viral, that can cause pain, ulceration, making eating and swallowing difficult, and needs to be treated with the appropriate meds for each. HBO may be controversial in this regard, during treatment, and have not heard of anyone having it, except for some trial, maybe, for increased oxygenation pre, and duringtreatment to the tumor to prevent tumor hypoxia since cancer thrives in low oxygen, which showed was not that effective, and other meds were used instead. HBO is only at certain institutions, takes 1-2 hrs daily treatment.

Viscous Lidocaine may also help on the worst spots - ask the doctor about that.

As long as you dad is getting calories and liquid in, meal replacement shakes are fine for the short term. My husband was still on a liquid diet 6 weeks out, but we were experimenting with home-made protein shakes that tasted less bad than the canned variety. I am guessing that you could come up with a simple recipe that would be ok with the diabetes. I made packets of ingredients for my husband to take to work to add to milk and (eventually) canned fruit in the departmental blender. Canned peaches were the mildest. Whey powder, Benefiber (if he is still on narcotic pain killers), sugar free Carnation Breakfast Essentials could be added to milk. He should have the services of a nutritionist available - that would be another source for a diabetic-friendly formulation.
Best wishes to you and your Dad - slow and steady wins the race.
Maria

Sorry to hear about your Dad. Magic Mouthwash and pain meds got me through a very long recovery. It took me about three months to begin to even remotely feel like myself. I think it took me two months before I could eat anything at all, and I only forced myself because I hated my PEG and they wouldn't take it out until I could eat by mouth again. The Magic Mouthwash really is magic. Also, please tell your Dad that he will heal. I had a hard time believe it for myself, when I was in the worst of it, but it is true. I will say prayers for him and you. -Michelle

I'd like to expand for a moment on what Marie said about shakes as meal replacements. I had a conversation with my RO on this subject, and he cheerfully advised me to stay on them as long as I liked as long as I made sure to get enough every day. Healing is a high-energy activity.

Anyway, I was on them for more than 90 days. I was fortunate in that I totally lost my sense of taste very early in the process, so I was able to drink Jevity (the canned formula used to feed patients with a PEG (feeding tube)), and my RO just happened to have a couple of cases left over from a Patient who never wanted to see the stuff again.

(I was less fortunate in keeping it down, due to the extreme nausea from Cisplatin, but that is not a problem related to or caused by the liquid, as opposed to solid, nutrition.)

Best of luck to your dad, he's lucky to have you in his corner!