Inability to swallow and never ending foamy saliva

Thank you for your comments. His surgery was Jan 25 so it's gone way longer than that. He also has non stop mucous and foamy saliva he can't swallow. This leads to almost non stop coughing episodes. We are thinking about seeking out a regular ENT to help us sort it out as our surgical oncologist seems to have no suggestions. It's at the point where he is so depressed and overwhelmed he doesn't know who to ask or where to turn for help. I have not found anyone who had this problem for this long.

Hello,
So yes that’s common and I too suffered from both issues and yet still at over 7 years out from stage IV treatments the mucus is still a problem.

I was prescribed medication to produce saliva but it didn’t work for me. Also the following was recommended but none of them worked for me; mucinex, biotene, xylitol (xylimelt), nonalcohol mouthwash. Though they failed for me they may work for your husband.

I found that first thing in the morning and several times throughout the day I run hot water, as hot as I can stand. I swish and spit several times. Once my mouth is clear I take small sips and hack it up and out.
Sometimes this takes several rounds but it works!

I then brush my teeth and then brush again with prescription fluoride toothpaste and leave it dry for 1/2 hour ish.

The cough; I was coughing like a fool and then one of my nurses said, let me get you a prescription for Teslon Pearl…what a relief!!!

It took me nearly a year to eat oatmeal so be patient but at least try to keep drinking fluids…I was unable due to choking!

Hope this helps

MOJO

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.

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.