Specialized reconstruction is complex. Have you looked into university hospitals or larger centers that focus specifically on these types of procedures?

I am sorry to hear that the usual options haven't brought any relief. Hopefully, this new specialist has some better insights for you.

The stress of waiting for scan results is immense. I am glad it turned out to be just inflammation and not a recurrence.

I was skeptical, but the dryness was just too annoying to ignore. Reading this page on why people tape their mouths at night made me give it a shot. The biggest difference for me? No more morning headaches, probably because I stopped snoring and finally started breathing through my nose properly.

That sounds frustrating after everything you have been through. Have you discussed this specific issue with your surgical team yet?

It's best to check with your surgeon when you notice such a distinct change, just to be safe and clear up any doubts.

That sounds incredibly painful and frustrating, especially when you feel like you're not getting clear answers from your doctors. It might be worth asking for an urgent appointment or a patient advocate if the pain is becoming truly unmanageable while you wait for those scan results.

Thanks PJE.

My coughing fits are mostly limited to the daytime; I may cough for a few minutes after laying down to sleep, but I don't typically have another episode through the night. It's interesting to note that the coughing-runny-nose-watery eyes sessions mirror a typical histamine response to an allergen. My bronchial tubes are getting a bit sore from the intensity of the coughing.n

On another note, are you being proactive regarding your carotid artery on the affected side? I'm hooked up with a vascular surgeon who has me scanned each year for stenosis. Thus far my common channel is <50%, but where a smaller artery bifurcates off to perfuse my face, there is >50% atherosclerosis. He's not worried about that. My reading has taught me that the rad therapy is particularly hard on the epithelial ( innermost ) lining of the carotid artery, possibly resulting in an increased rate of sclerosis and risk of stroke - the fun never ends, lol!

Take care Brother...

dAN

Hi,
I was diagnosed with Stage 1, HPV+, Base of Tongue cancer which spread to my Left neck Lymph nodes.
Surgery was not an option as too many nodules were affected.
Treatment was to be 7 weeks of Chemotherapy (1 chemo oerceeek) along with Radiation (35 sessions).

My MAIN REASON by joining this group is to share my personal experience with the mouth sores and that was recommendation from one of my Chemo nurses. Her son suffers from a non-cancer condition where he has constant mouth sores, serious ones he’ll have to endure his whole life. The nurse said the only thing that has has significant improvement for him (15 years now) is an 100% ALOE VERA distilled mouth drink.

I got this product and started gargling and soaking my mouth with it and I have to say, I’m in wee5, and this has had a PROFOUND EFFECT. My sores are actually healing as radiation continues. 4 ounces is the maximum to swallow, but I also just use like a gargle about 6 times daily and spit out the rinse. It is a real game changer for me.

Hi Dan. My case is similar to how you describe yours, although I also had chemotherapy and surgery. However my ten-years-after-treatment symptoms would read almost word for word like what you wrote.

My otolaryngologist assessed the lump as fibrosis caused by the radiation. Nothing to worry about. Hopefully your scan will show something similar. The only bad news is that's just the way it is for me - there's nothing to be done about it.

As for the coughing, I have started using one of those triangle pillows when sleeping which puts me in a more tilted position, helping drainage and marked reduction in coughing at night. The other thing that has helped is guaifenesen DM (Musinex). This makes my mucous drip drain better, and the 'DM' ingredient reduces the cough urge somewhat. I use it as needed, but take it most nights. Standard dose (400mg every 4 hours). My doc is not concerned about ongoing use.

Best of luck finding a way to deal with this. I'd be interested in anything else you learn that helps.
-Peter

Greetings,

I was successfully treated for HPV 16 Tonsilar cancer ( left ) in 2017; I received the Standard dose of rads for the tumour & declined the chemo aspect of the Standard. About a year ago, I began to have fits of severe coughing, typically while eating foods that when masticated, create hard, small bits to swallow. I've assumed the coughing was the result of my rads-affected throat tissue being hypersensitive to certain types of food irritants.

In recent months the cough response has worsened & in addition to food stuffs, it seems to be irritated by the seemingly never-ending joy of post-nasal drip. Other times, and quite often, I have a severe response for seemingly no reason, where my eyes water, I sneeze excessively & cough forcefully. Considerable nasal mucous is generated from this process. It sounds like a classic response to an allergen sensitivity, but I've put that possibility aside until this being a byproduct of my cancer Tx. has been ruled out.

Finally, I've been monitoring the formation of what I believe to be scar tissue on the rads-affected side of my neck. It is hard to the touch & appears as an elongated, faint bulge that extends almost to the tracheal wall. I went to see my Onco about these problems; disappointingly, he didn't have anything useful to say about any of these issues and didn't offer an opinion on what this hard, elongated mass of ?? was on the affected side of my neck.

I'm scheduled for another c-scan of the area in question, which will be reviewed by an ENT specialist. I'm hoping to, in part, learn of treatments that may help with these evermore persistent symptoms.

Question: has anyone with a similar issue & Tx. protocol experienced such symptoms? If you have, did you find any Tx.'s or products to help mitigate the issue?

Sincerely,
Dan

Has anyone experienced scalloped tongue from a swollen tongue due to swelling from radiation/surgery?

I’m 3 years SCC post 15% removal left tongue surgery and chemo/radiation and still have swelling that is causing scalloped tongue where a tooth indentation causes soreness and no resolve. Dentist doesn’t have any resolve and surgeon has no resolve either.

Unsure what to do to help resolve it.