I finished my radiation in March and I am still unable to swallow food or liquid due to severe pain. Is this normal?

Hello,

Not being a doctor I can't say what's normal, but (there's always a but) I can say that I've read on message boards about people that still had their feeding tubes in a year after radiation.
I do believe that everyone is different and likewise their individual healing time after radiation is different. I finished mine in January and still have difficulty swallowing some things and am sensitive to spicy and strong foods.
My last visit to the doctor I was told it would be at least 18 months before I knew what taste buds I would have or saliva I can expect to keep.
Have you discussed this with your doctor and does he find it unusual? Is he concerned about infection or anything? What has he told you?

Sorry I couldn't be more helpful, but I know someone that knows more about the process will come along and offer info.

Take care,
Dinah

Given my own experience, and from what I hear from many patients, you are very normal in your recovery. I have posted here before saying that most people can count on one month of recovery for every week of radiation. I was 10 months out of radiation before I was eating enough to consider having my PEG tube out. I was over a year out before my taste stabilized, with different things returning at different times. (First salty, then bitter, then sour, finally sweet. Sweet never returned completely and chocolate, that I used to love tastes like lard now). It sounds like you are experiencing the normal course of recovery.

Michael, I was so sick during and after radiation that I never expected to improve. I couldn't speak or swallow ANYTHING for months. For me I was finally able to handle liquids about 6 months after radiation and was soon able to drink enough to have the tube out. Its now about 13 months since radiation and I can eat soft foods now but swallowing is still a challenge sometimes. Hang in there, the improvement will not happen as quickly as you would like but there will eventually be improvement.

Thanks to all who replied to my question on post rad swallowing trouble. To be more specific, my swallowing problems are due to large painful ulcers on my soft palate & throat which occured 2 to3 mos. after completion of rad. therapy. In reply to Dinah,yes my doctors (both ENT and Ocologist) are aware of the condition and assure me that it is not getting worse and that there is nothing more they can do. Am applying topical painkillers,practicing good oral hygiene,and waiting for time to heal these sores,as the doctors assure me that is the only cure.If anyone has any other suggestions on products and/or methods for oral hygiene other than Biotene toothpaste and mouthwash along with countless salt water and baking soda rinses,I welcome your suggestions.
Once again thanks to all. Wish I'd known about this site 6 mos. ago. I'm sure it would have made the entire process a little easier.
Bless you all,
Michael Strantz

Michael,
My husband used lollipops that deadened the pain. He claims that he would not have made it through his radiation without them. They are made by a particular compounding pharmacy in Gainesville, FL. The active ingredient is Tetracaine. They are by prescription, only. This particular pharmacy makes them for the Head Cancer Center in Gainesville - I'm not sure what the rules are regarding posting their name and phone number on the Forum site. If anyone would like their contact information, I'd be happy to email it.

Michael,
It's not a cure, but was a help to my mother to use an over the counter vitamin called Lisine. I asked the doc first, and since it is a regular vitamin, no problem. We had to crush it and dissolve it to use in her feeding tube, since she couldn't swallow either. It is a great help in aiding canker sores, and those terrible ulcers on the tongue. And it is useful for people with cold sores, fever blisters, sun blisters, ect. We found it ectremely useful....one a day and she felt results within about a week. It's worth a try if your doctor is for it! Hope that helps a bit....good luck and keep the chin up!!
Brooke

Michael,

Sorry to hear that your sores are that severe. I wasn't near that bad and was able to bear mine with the help of "pink magic" or "pink cocktails".
Good luck and I hope some of the other replies help.

Take care,
Dinah

I believe that Brooke is referring to L-lysine which is an amino acid, not a vitamin. There is some anecdotal evidence that in the treatment of cold sores (herpes simplex) that it MAY reduce the time it takes for them to resolve. They normally have a 10-day life span. Health food stores and magazines have been touting lysine for this application for a long time, but the results have never been reproduced in peer-reviewed studies. It won't hurt anything to try it, as it is a naturally occurring amino acid that you get through your diet.

Lol......thanks for the correction Brian! I knew we got it near the vitamins, and the woman who suggested we try it referred to it as one. You are amazing....I wonder how, exactly you retain soooo much information! Best of luck to you,Michael....keep us informed on your recovery.