Hi everyone -

Things have been going really well in the last few months with respect to recovery. Eating normally, dealing better with acidic and spicy foods (tomatoes, some salsas, oj, etc) until a few days ago.....
I started getting the following symptoms on the side of my face that received the greater dose of radiation:

-Ulcers/sores in mouth (on tongue and back of mouth/soft palet)
-fairly strong pain in ear, with the feeling I need to clear pressure in it
-pain in my jaw and below my jaw on the neck
-headache
-pain swallowing and a feeling that throat is smaller
-slight pain on my scalp if I move my hair around (for example running hand through hair)
-No fever

I was thinking this could be an ear infection or some other type of infection, but the mouth sores seem odd to me. Its also strange that there are so many diverse symptoms and they are only on the side that had the heavy dose of rads. I almost feel like I did only a month out of treatment with all the pain in the mouth and swallowing pain. Have been taking tylenol to manage the pain, but it doesn't fully deal with the pain currently. Hopefully this is something minor and not representative of something to do with the radiation - the gift that apparently seems to keep on giving....

I'm planning on calling my MO tomorrow and seeing if she has any ideas / wants to see me.

Any thoughts from someone who has had similar symptoms?

Thanks for any thoughts

Sorry to hear, not trying to be funny. Call the doctor, and reminiscent or recurrent cancer, although unlikely, should be addressed, and ruled out. If you had this pain before Tx, you would more likely have pain after Tx than someone who didn't initially. It could be neuropathic pain, which is treated with meds like Lyrca, Gambapentin, and then for swelling that may be irritating something, corticosteroids like prednisone. I had ear shooting pain before Tx, and for quite a while afterwards, and still do occasionally . I took oxycodone, and switched to Fetynal patch. Now I can't even handle one oxycodone, and was sick for 4 days last week after taking one for tooth pain, which also causes shooting pain to the ear. Hope this helps.

Just an idea, fungal infection? I was improving after treatment until about 1.5 months after then everything went downhill back to the way I was right after treatment. I just figured it was part of the back and forth I was told I would experience so I dealt with it. When I did finally see the RO he put me on antibiotics for a fungal infection even tho there were no signs and it made a world of difference. I had ear and jaw pain, increased difficulty swallowing, choking, increased pain in general in my mouth and tongue that felt like muscle pain and stinging on lower part of my tongue back where I could not see. Apparently its very common and must have something to do with chemo because I know other C patients who had C in other areas who have increased problems with fungal infections on skin and other places.

Hi Andrew,
I'm ten weeks post and have various symptoms as you; they come and go.
YES -Ulcers/sores in mouth (along lower back of jawbone, started yesterday)
- occasional ear ache, with the feeling I need to clear pressure in it
- frequent pain in throat, especially after eating and swallowing a "solid" meal.
-occasional strong pain on my scalp if I move my hair around (for example running hand through hair)
-No fever

I called the MO on the scalp thing; they did not think it was neuropathy and suggested I take ibuprofen which works to knock down the pain.

My take is a lot of this stuff is "normal" along the path of recovery as our bodies are still weakened; our immune systems are still not working fully so some small bacteria take used to be banished now becomes a sore.

I am thinking that since I had two teeth pulled pre-tx that my chewing is compromised and I know there are times when I chomp on something it just grinds into my jawbone flesh and that has to make a sore.

Best to you, don

Hi Andrew.....I am 9 months post radiation, no chemo and I am still experiencing pain in my jaw, my neck, my muscles in my left neck right below my head and also head pain above those muscles especially when I eat that requires alot of chewing...My doc said its pretty normal as Im still healing. Could take up to or even more than 2 years to recover...Frustrating I know....I also have sharp ear pain once in awhile too. Like Don said, I am thinking its normal aches and pains during recovery...

Definitely check with your MO but they do sound like some fairly normal side effects of treatment. I also experience the pain and discomfort on the left side where I had the greater dose of rads and neck dissection. It wouldn't be unusual that your throat is a bit narrower due to the rads.

The pain on your scalp could possibly be a touch of peripheral neuropathy. I got a pretty nasty case of it and was treated with Lyrica and Tramadol.

Good luck and continued healing.

"T"

Thanks for the responses and ideas. I went to an appt with the MO. Looking in my mouth she said it looks like radiation recall. However, she said radiation recall usually happens shortly after treatment or when chemotherapy is used post treatment. She thinks the pain I'm feeling in the jaw and ear is due to referred pain as the location of the largest sore (1cm diameter) is near the tonsil which can cause pain in other areas. She swabbed my mouth to test for HSV, which can cause mouth sores and can be often activated in asymptomatic individuals post radiation. However, post treatment we tested some slow to heal mouth sores for the same reason for HSV and they were negative. I'm going to see her in 1-2wks if the sores haven't healed. I was also referred to a neurological pain doc to have him have a look at symptoms as well. I'm also experiencing Lhermitte's sign (although its not too strong) and it will be useful to get a neurological doc's perspective on it.

I'm feeling better the past day or so; it seems the sore is healing. So hopefully just a fluke. Most of the symptoms have subsided to some degree. If it just referred pain, its pretty crazy how many different areas of the face a simple large sore in the right place in the mouth can impact.

Tons of nerves travel through the neck and even muscles in the neck near the brachial plexus can cause referred pain in the toes. Someone working on them (scalenes) can help tingling and pain. I have had the hair problem you speak of since interferon treatment for Hel C in 2002. It has taken a Demerol shot to calm it many times. The face is almost all nerves!

Hello Andrew

How many pain killer have u taken a day for pain. coz after a year of finishing Radiation , my father still have a unbearable pain & taking 4-5 pain killer a day...He was having in RIGHT SIDE in earlier stage but rt now he is having pain in eye , brain & ear at left side, whats your experience says ? kindly share ..

Thxs

Gayatri

If a mouth sore, ulcer, still persists, I heard of presciption drug Pentoxifyine being used with vitamin E. HBOT is often used to help wound healing, but I don't know if it applies or would be approved for this? Good luck.