Hi, Everyone! After a few months of improvement to the point he could eat real food and think about traveling again, my husband has developed painful ulcers on his tongue that are not responding to prednisone or topical treatments. Lidocaine and pain meds give him temporary relief. But he is so discouraged and depressed at having to go back to eating liquids and mush again. We both need encouragement and tips from anyone and everyone who has something to share that might make life easier for him. We have plans to go to LA in a couple of weeks for an event with one of our grandchildren, but that is looking doubtful.

Welcome to OCF! Im very sorry to hear about your husbands eating difficulties.

When was your husbands last treatment? In your signature it only says 2016. To me, this means he is still in the recovery phase where unfortunately there will be some ups and downs and set backs. I suggest asking his doc for a prescription for magic mouthwash. This will numb his mouth temporarily so he is able to eat. He should also be on pain meds to help with the pain. I remember the mouth sores hurt so much!!! I feel so bad for anyone who is going thru this.

As far as depression, it is very common among OC patients and even their caregivers too. At his treatment facility there should be a therapist or someone to talk to about his depression. Ive always thought everyone needs a reason to get up in the morning. Maybe if your husband had something fulfilling to keep his interest it would help him to feel more useful.

Heres a list of easier to eat foods. This list works for those who are relearning to eat. The foods mostly have a smoother texture and less salt and spices which should make them easier to eat.

As a caregiver, you have your hands full. Dont forget to take some time for yourself too.

Best wishes to you both!


List of Easy to Eat Foods

Many thanks, Christine. His last treatment was August 1, 2016. After an initial difficult period, he improved to the point that he could eat most table food and had regained part of the weight he had lost. He was looking forward to some family events and next summer in the mountains, and then a complete reversal. About 3 weeks ago he developed one, then a second ulcer on his tongue and he is back on total liquids because of the pain. The slide has been dramatic. We use many of the foods on your list; I think I could write a book on creating calorie-dense soups! But surprisingly, some things one would think would be fine he cannot tolerate, like baked potato. It changes sometimes daily. He has all the topical Rx pain relievers, plus opioids. He tries not to take the opioids, because he wants to be able to drive and not give up that independence. I know he cannot completely cure the radiation mucositis, but I am hoping I can learn some new tricks to help him relieve the symptoms and maintain his quality of life.

If your husbands mouth sores are from the radiation, the sores should not be there permanently. It just takes time to heal. For most patients, they can never recover as fast as they think they should. A major contributing factor in all of this is his intake. After what your husband has been thru it can take a full 2 years for his body to bounce back. Every single day he should be taking in 2500 calories and 48-64 oz of water. I also suggest having a long chat with his physician, specifically asking about radiation mucositis.

Heres another link that may be helpful....

Main OCF site -- Complications of Treatment

My Radiation Oncologist had me taking 150mg of zinc daily for the purpose of restoring my taste buds. It took 12+ months but I have full function of my taste back.
All the best,
Rob

Lbpbbp -

Try to get your husband to the ENT as soon as feasible. If he completed radiation last August, he should not, just now, be exhibiting ulcers.

If the ulcers are not responding to the topical treatments or prednisone, then the cause may be driven by something other than surface irritation

Even if its just for peace of mind, rule out recurrence.

Are they growing or bleeding? For me, each cancer diagnosis was preceded with painful ulcers that did not respond to topical treatments or medication.

Please follow up with your ENT.....

I agree with the above posters. It seems strange to still have mouth ulcers after so many months post RADs. But I know full well how awful they can be, and lidocaine is only a temporary palliative.

If he doesn't like taking the opiods I'd recommend kratom. It's a natural remedy from the leaves of trees that grow in Indonesia and readily available from many responsible online vendors. It's a proven pain reliever and general anti-anxiety aide that I use with great success. Please PM me for more info if you'd like. And my best to both of you.

Thanks for the suggestion of the kratom. I will do some research to make sure it is compatible with all the other stuff he is using/taking.

Has anyone else used that with good success in addition to David 2?

I would agree with David2 and bjmpittsburgh that it warrants a visit to the doctor's. it's been five months and it really is a bit late for him to start developing ulcers from the radiation.

I agree the tolerated foods change daily or even hourly. I do well with soups but get nowhere with potatoes. I do use lots and lots of butter, gravy and syrup to get things to the back of my mouth and down. Always have a glass of liquid close by too.

The taste buds change from day to day too as I am sure you already know. I almost go through the floor if I use a Kleenex to wipe my tongue. It feels like I am ripping several layers off my tongue. I guess the new taste buds are extremely fragile.

I also have good and bad days with swallowing. One day I can get away with even chewing on a French fry the next day liquids are a struggle.

Please also try the baking soda, salt gargle, or just salt gargle for a little relief.

By all means keep up the calories with liquids and get that water in each day to heal and not create new problems.

Wishing you the best, please keep us informed.

Lbpbbp,

I had problems with ulcers and healing similar to your husband. My tongue was swollen for months, and I would get ulcers on tongue and all areas in my mouth that was exposed to radiation. I required pain medication to be able to eat and was on a liquid diet for a long time. Certain foods would guarantee an ulcer. I was on prednisone and all kinds of topical medication for a long time. My RO said I had the worst reaction to RT he ever saw.

He referred me to the head of infectious diseases at the hospital for further testing to see if there was another cause of my healing difficulty (didn't find any). He recommended hyperbaric oxygen therapy (HBOT) which helps with non-healing wounds, but first he put me on a different medication therapy - trental (pentoxifylline) + vitamin E. I finished RT in April 2006, was on the trental therapy from 10/2006 to 6/2008. It helped, but didn't fix my issues. I then went for 45 HBOT "dives" in 2008 - finally got some relief.

My mouth is still very sensitive, I did develop ulcers from time to time, but not in the past few years. I hope this info helps. Wishing you and your husband the best!