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Hi Dhyana,

Welcome to OCF and thank you for reaching out. I am sorry to read of your complications. Although I have not experienced what you are going through, I recommend getting this checked out ASAP. With your history, staying on top of this and having regular checkups with your H&N doctor is critical.

Please update us as you go along this journey. It will certainly help others down the line.

Stay safe and keep the faith,
Nels

I am here on this forum again after 17 years with a heavy heart.
In 2009 my mother (then 43) was found to have a stage IV cancer of the palate with some spread to the lymph nodes, which was treated with radical neck dissection and then radiation.
In the period since, she has suffered from impaired speech, impaired hearing, trismus, been reduced to soft bland food, lost most teeth and has gradually deteriorating oral conditions. But -- and we are grateful -- she has been cancer free.

This year, a new ulcer has appeared on the side of the tongue extending into the base, on the opposite side of the mouth to the original. It is diagnosed as SCC and has not spread.

The surgical option would require full tongue removal, going through the jaw bone, windpipe reattachment, and tongue reconstruction with tissue from the thigh. She would lose speech completely and need to use a gastrostomy tube for the rest of her life.
My mother is obviously mortified at the prospect of going through something like this again, and the team at our cancer hospital thinks the morbidity of such a surgery would be very high. All her life she has been the person taking care of everyone else, us and our children. It also bothers her a great deal to find herself dependent on others.
Considering our own reluctance towards surgery, we have been proposed a combination of chemotherapy (12mg/m2 of Docetaxel - to avoid further hearing impairment from Cisplatin) and Proton radiation (aiming to avoid brain stem and spinal cord).

We got a remote 2nd opinion with a prominent UK surgeon and he was confident this new primary is caused by the first radiation therapy, and that in such cases the tumour does not respond well to irradiating again. He believes that the chemo-radiation option will therefore not be curative, and she would end up with a feeding tube anyway. That makes it look like the option we were heading for is not an option at all -- significant side effects with little chance of a cure.

It would be most helpful if someone has experience to share from either of these pathways. I do appreciate everyone's case is different but getting some idea of the human side of this condition would perhaps give her clarity.

Wishing good health to all.

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.