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

Thank you for replying Sue..After my throat and neck surgery on 12/2021 a nose feeding tube was inserted and the constant rubbing against my soft palate was an issue. One night I coughed up a blood clot from the soft palate area from the chafing. A little of my soft palate had to be removed during surgery ( had some cancer) plus 2 masses at the back of my tongue and left retro molar trigon ( behind the gum behind the last molar). I was told the only radiation and chemo was needed for the neck because there was 2 of the 33 lymph nodes that had cancer. Before getting chemo I had a peg tube inserted into my stomach to replace the nose tube and a port in my chest was inserted at the same time. I have a regular checkup with the surgeon to check for cancer and I am seeing a speech therapist that is giving me exercises to strengthen the swallowing muscles..She recommended for me to get a palatal lift inserted to keep the soft palate from drooping. It would be like a upper partial plate. Now I am battling a lung tumor which I was told is not from the throat cancer that I had. I want to get that cured first with the chemo and radiation. I am constantly hocking up mucous from the top of my palate where it is produced and regular saliva is still gone. I have been on Glucerna for over 3 years for nourishment because of the soft palate interfering with my swallowing. My first ENT took a look at my barium swallow test results and said "Looks like you will always have your stomach tube" I didn't think she should of said that. Last time I go to her. Also, this past year, the inside of my upper gums get swollen now and then..My dentist checked and said it's all from the 30 treatments of radiation I got almost 3 years ago. I also have to be careful not to aspirate when sipping on water because the throat muscles aren't working normally. Another thing, I have COPD and been using a nebulizer with albuterol. I am wondering if this is keeping my throat and gums from healing.

@gareee31, I expanded the title of your discussion to reflect your question about the soft palate. You might find additional information in these related discussions:
- Flap Not Functioning https://connect.mayoclinic.org/discussion/flap-not-functioning/
- Has anyone experienced a tonsillectomy and soft palate reconstruction? https://connect.mayoclinic.org/discussion/has-anyone-experienced-a-tonsillectomy-and-soft-palate-reconstruction/

How are the sessions with the speech pathologist? Do you have exercises to do daily?

Yes . My speech therapist which I see weekly gives me exercises to do home to try and strengthen that soft palate..She is also looking into a specialist to fit me with a palatal lift. This is a device that hooks up to your upper teeth like a removable partial plate and has a bulb at the end to lift my lowered soft palate to help swallowing. I also get blisters now and then to my inside upper gums just above my molars that most likely is coming from the radiation almost 3 years ago. Hopefully that will subside.I do get a burning sensation to my soft palate probably because of the hocking up I do to get rid of the mucous that builds up above the palate.

@sepdvm I am seeing a speech therapist to help me swallow. I get recheck from my surgeon and he just gave me a soft plastic bottle to squeeze water through my nostril to clear out 24/7/ producing mucous that is produced above my soft palate..I am just wondering if this mucous is lymph fluids escaping..I had 33 lymph nodes in the left side of my neck removed during surgery back in 2021. I am having an orbital soft palate lift being made up to lift the soft palate while swallowing...This device is like having a shoehorn in my mouth. It covers my whole palate so the tongue just about can move.

@gareee314 You are dealing with quite a complex issue and it sounds like your medical team is working with you to address this. I wondered if your surgeon has you using distilled water or a mixture with salt and baking soda? Like the Neilmed sinus flush from the drug store.
I have no personal experience with lymphedema of the head and neck but I have not seen others on Connect mention the mucous production with their experiences. Perhaps the remaining nodes on your right are capable of keeping the lymph flowing.
Are you swallowing any nutrition or is it all through your PEG tube? Keep working on this and hopefully you will regain swallowing skills.

The only thing I can swallow without coughing is sips of water with my head turned to the left.
This backwashes a little toward my nasal canal so I can hock out the mucous to the back of the tongue to spit out. I tried carbonated soda, ginger ale, Pepsi, and what they do is make the mucous bubbly like a chemical reaction. When I try citrus products, it burns my soft palate.

Thank you for posting this. My husband has just received the diagnosis. His will loose his palate and they are taking out a large tumor off his neck. He is just turning 59 in a couple of weeks, and we have no idea what this all means. Thank you all who have shared. We are terrified, but glad to read that treatment is possible. Many blessings and sincere hope that you find the right treatment and strategies forward.

@ceci2026 For sure this is very scary but try to remember that your doctors have so much expertise and they know what they are doing. My husband has been through head and neck cancer. We were told by the medical oncologist, "this is all I do", try to keep that in your mind. They are so focused on healing their patients and they really care. Please keep us updated?

@ceci2026 I hope you can continue to find support here on Connect. There will be a lot of changes for you both through this treatment and recovery. Healing is a slow process, measured best in weekly improvement as opposed to daily. Keep in close touch with your medical team for answers and suggestions when issues pop up. I suggest lots of questions about side effects and complications when you meet with your surgical team, as well as radiology if that comes into the picture later. It is better to be prepared than be in a panic when something goes wrong.
There is a light and life at the end of the tunnel, and some day you will be able to provide others with information from your experiences. How soon is his surgery?