HPV squamous cell throat cancer: Soft palate isn't working

Posted by gareee314 @gareee314, Mar 15 5:19pm

I had my surgery on 12/2021 which started in the left tonsil and traveled to the back of the tongue , some of the soft palate, and retro molar trigon. Neck dissection with the removal of 33 lymph nodes, 2 were encapsulated and tested positive. I still need a stomach tube (3/2025) for Glucerna for nourishment. I am 72 years old. My upper(inside) gums get swollen now and then (since 1 year ago) and my soft palate feels like it's touching the back of my tongue. I produce alot of mucous above the palate that prevents me from swallowing food and hard time swallowing water. I constantly have to hack up to clear my palate from the (sometimes yellow) mucous into tissues. I had barium swallow tests done and they claim my soft palate isn't working properly and and swallowing make things (50%) go upward above my palate and could cause me to silently aspirate. I am seeing a speech therapist now to strengthen the throat muscles..Anybody hear or going through these same problems?

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mark10 | @mark10 | Mar 16 8:14am

Did you have radiation after your surgery?

gareee314 | @gareee314 | Mar 16 9:04am

In reply to @mark10 "Did you have radiation after your surgery?" + (show)

Yes. 3 treatments of 30 radiation plus 1 chemo ( cisplatin). 3 days later I passed out at home and ambulance took me to hosp. for a GI bleed..A vein ruptured in my small intestine and it could have been a combination or the chemo, metformin and plavix ( blood thinner) that caused it..19 days in the hosp and 13 units of blood I was released and just followed up with the rest of the radiation treatments..Too scared of getting chemo after that episode.

mark10 | @mark10 | Mar 16 9:49am

I have now had 3 reoccurrences of squamous cell cancer on tongue and tonsil. I decided to decline radiation due to the many unpleasant side effects documented in this forum. Going to consider immunotherapy or any other alternatives to radiation. I’m sorry for your continued effects and hope your situation improves.

gareee314 | @gareee314 | Mar 16 10:22am

Thank you mark10. and good luck to you.

lrogers785 | @lrogers785 | Mar 16 1:44pm

Yes my husband is going through the same thing, Mucinex helps alittle. He is getting the swallow study done soon. Nebulizer did not help amongst other things. He will also have speech therapy and any help that department can give. He is also on a feeding tube and has been since last July. Little sips of water and coffee right now. We are hoping and praying that this will subside so he can get off the feeding tube and eat again. Speech also is compromised. Good luck to you if you are trying anything different and it works, please reach out to me and I will do the same.

gareee314 | @gareee314 | Mar 16 9:08pm

In reply to @lrogers785 "Yes my husband is going through the same thing, Mucinex helps alittle. He is getting the..." + (show)

I hope the both of us will get off this feeding tube..I had a bad experience with my local ENT doctor. After she looked at the barium swallow test results, she looked right at me and said "Looks like you will always have that tube". I am looking for a new ENT doc after that. Also my saliva glands were fried too. This has been going on for 3 years now.

roblem | @roblem | Mar 17 1:57pm

In reply to @gareee314 "I hope the both of us will get off this feeding tube..I had a bad experience..." + (show)

Hi @gareee314,

I had 35 rounds (7weeks) of Photon radiation for a total of 70Gy and 3 rounds of cisplatin chemo for tonsil cancer back in 2008 but no surgery and to help with the brutal dry mouth tried Electrical Stimulation Acupuncture in 2015 which was offered at my cancer clinic for head & neck cancer patients. I was tested to get a baseline and retested after 8-10 appts. and had great results. Never needed to go back and to this day 10 yrs. later dry mouth is a non-issue. I also slept with a bottle of water next to me and got a Humidifier on my end table to make sure there was the most moisture possible in my bedroom to help get some sleep.

I got this from my other cancer group SPOHNC and it mention AQUAx2 which is a clinical research study for people with moderate/ severe dry mouth (xerostomia) caused by radiation therapy purpose is to assess the efficacy and safety of "gene transfer" study drug called AAV2-hAQP1.

In addition,I didn't have this available to me but others on this support group site have mentioned “Xylimelts Stick-On Melts” you can buy off Amazon and the box of 40 was less that 10 bucks. People say they really work, and they sleep through the night. And their daytime dryness is much better also. You should research using for extended period of time effects. Also, Biotene spray is effective long time after 2 or 3 sprays! And more recently there is a Aquoral Protective Oral Spray- Dry Mouth Relief which is more than temporary relief of dry mouth. Or a prescription of Cevimeline.

Good luck on your journey.

gareee314 | @gareee314 | Mar 17 3:16pm

Thank you roblem.

gareee314 | @gareee314 | Mar 17 3:50pm

I have been on the stomach tube using Glucerna for the past 3 years. Since 1 year ago my upper gums above the molars and soft palate swell up. Dentist checked and said it isn't a dental problem. Thick mucous constantly builds up above my palate. Constantly hocking it into my mouth to spit out. I know my soft palate does hang a little lower and touches the back of my tongue which makes it hard to swallow anything. I guess radiation after the surgery did me in. My throat works fine it's just the soft palate (which a small piece was removed) is holding me up from swallowing normally.

Sue, Volunteer Mentor | @sepdvm | Mar 21 9:04am

In reply to @gareee314 "I have been on the stomach tube using Glucerna for the past 3 years. Since 1..." + (show)

Hello @gareee314, Do you still have a nasogastric tube or have you had a gastrostomy tube in place through the stomach wall? What does your ENT say about this issue? Has anyone discussed further surgery that might help your swallowing? I have head and neck cancer, but not oral, but my father did and he ended up with a gastrostomy tube, which was much easier to maintain and live with. His soft palate was not affected except by the irritation of the nasogastric tube for many months.
Has anyone recommended medication like plain Mucinex to thin your secretions? How often are you seeing your doctors for re-checks? Have they ever suggested swallowing therapy to you? It seems like this is a long time to be living with this issue, and while it is better than dying of cancer, I would want to pursue every option to see if it could improve. I hope others have some helpful suggestions for you.