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

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.

Hi Thelma,

Welcome to OCF and thank you for reaching out. I am sorry to hear of your difficulties in recovery. I had surgery (half tongue replaced) and radiation in 2020. It took many months for my tongue swelling to come down but not three years. It will never be normal again but what you are describing does sound like you should keep finding doctors to look at it.

Can you find another medical team to get a second opinion? Are you near MD Anderson? They are one of the most highly respected cancer centers.

Please keep us updated, stay safe, and keep the faith,
Nels

Hi Patrick,

Welcome to OCF and thank you for sharing your experience. I am sorry to hear of the difficulties in your recovery. Although I did not go through the same procedure (I had 50% of my tongue removed, rebuilt, and radiation, no chemo in 2020), I can share that my recovery took many months and food and flavors took years to come back. My saliva has never fully recovered. I do remember early months waking up with a completely dry mouth and it felt like my tongue was Velcro'd to the roof of my mouth.

Journaling, both written and video, helped me. I would get down thinking my recovery was not improving, then I would watch an old video or read my old entries and realize I had come a lot farther than I thought. I did have to learn to look month to month as I got further out from treatment.

Please keep us up to date, stay safe, and keep the faith.

Nels