Inability to swallow and never ending foamy saliva

Over 2 months after TORs surgery for throat cancer my husband has made almost no progress in swallowing in spite of doing all the exercises every day. His speech therapist says she doesn't recommend it. She gave no reason why. My husband is getting more despondent daily with the inability to even swallow his own saliva. His surgeon has no answer. Looking for anyone here who has tried it. Thank you!

Hello @phyllisg. I can certainly see why your husband would be discouraged by his post surgical dysfunction, and the lack of support by the surgeon. I had to look up Vitastim therapy and there is a lot of information online. There seem to be many hospital systems who use it. I did not find a lot of serious side effects noted that would make its use dangerous. I have had experience with a TENS unit for pain control and another noninvasive nerve stimulation device to enhance healing. Both were helpful. It sounds like you need to look around for a new speech therapist who has had successful experience with this treatment. Second opinions can be very valuable and maybe another ENT consult would open some doors into further treatment. Do you have a large referral center within driving distance? We drive 10 hours from Ohio to Mayo Clinic in MN for our cancer care as the quality is unmatched by what we had experienced.

I have had significant eating difficulties after my two months of Proton Therapy and Chemo for a nasopharyngeal carcinoma. My treatment ended a year ago and so far I am cancer free. However, I am still learning to eat with all the changes to my mouth and saliva glands. My ENT is my primary go-to person along with my SLP who specializes in swallow therapy and has shared many strategies for eating. I would encourage you to seek out an ENT who has experience with head and neck cancer patients. My oncologists are also very helpful but my ENT has an amazing understanding of what's going on and my difficulty with my eating and swallowing. And yes, my saliva glands were impacted during the radiation, they produce no saliva and probably never will. My swallow therapist is also amazing, I have learned so much from her. I have gone from a diet of liquids only to a diet of soft solid foods. I am finally starting to gain weight but really have to work at it. I have found that the recovery time has been much longer than I anticipated. Good luck to you and your husband. Wishing you both the best.

Thanks for your post. I'm at a year and am just beginning to eat oatmeal. I found that the road to recovery from treatment can be much longer than anticipated.

Best wishes JM

Hey Joanne,
Yes you’re not alone. I know I felt as though I was way behind in recovery but my oncologist kept telling me that no two people recover equally…but the speech therapist kept saying otherwise and I simply refused to keep going to the therapist…I found her to be a waste of time and money!

I ate when my body and brain agreed to eat!

Jody

Thank you for your comments. We were told by one therapist that if he didn't swallow soon, he'd forget how. But the copious mucus and phlegm that led to terrible coughing fits prohibited him from doing the exercises as frequently as they wanted. The last therapist we saw seemed more reasonable and understood and said just do what you can but keep trying. And if the exercises sent him into a coughing fit, just stop for a while and do what we can, even if it's only once a day.

Yes, that’s what happened to me as well but the therapist was still forcing me to eat…that’s why I stopped going!

Yes the throat will forget how to swallow but I was able to retrain it as I progressed….

I still have a hard time eating even as I’m 7.5 years out!

Hang in there!

MOJO

Can you share any sites or handouts which your swallow therapist or ENT have shown you? Is your swallow therapist an SLP?

I am also still having swallowing difficulties after 30 radiation treatments for thyroid cancer which ended in Dec 2023. Oncologist has not recommended chemo yet and have also not had radioactive iodine treatment. Last PET last month showed no cancer in my neck; cancer had spread to my lungs but its slow growing and not being treated.

Had to have one esophagus stretch in February and being scheduled for another.

I don't seem to have as much foamy saliva as before. When I feel a tickle in my throat, I spray simply saline into my neck stoma and take a small sip of water. I either swish it around and then spit it out or swallow it. I also have been using Biotene and Salivea Dry Mouth Toothpaste and sprays for 3 months. Not sure if that's why its improved or if my body is just recovering from radiation therapy.

Good luck to you and everyone enduring cancer and the treatments.

Does anyone have experience with the use of atropine sublingually to decrease excess mucous and phlegm in throat following throat cancer surgery?