Hello Vicki:
I would also like to apologize to you for not acknowledging your kind reply.

It is indeed a bizarre phenomenon, this excessive projectile saliva. I was told immediately after my treatments ended by my surgical oncologist and radiation oncologist that they were able to save some of my salivary glands but others were destroyed. They explained xerostomia and told me I would experience this for the rest of my life. My radiation oncologist prescribed Pilocarpine, a medication to treat “dry mouth”, from which I was indeed suffering. I cannot say it helped. I can say my surgical oncologist (who happened to be a world renowned surgeon, professor and researcher) simply shook his head indicating he had no faith in this drug. I continued with this medication for many years yet always had no saliva. I should also mention that I have seen many speech therapists and none were of any help to me.

One day I just decided to discontinue treatment with this drug. Oddly enough I noticed no change. Ultimately it became necessary to have all my teeth removed. Initially after the extraction I received full dentures (upper and lower). Unfortunately I was unable to wear them successfully (that’s another story). There came a point in time when I noticed my mouth was not continuously dry. Upon desisting wearing the dentures I began to notice the “spewing saliva syndrome”, particularly when I speak loudly. It persists to this day.

So it’s a perplexing situation for which nobody has been able to explain or offer a remedy. I remain hesitant to undergo any type of injections because I fear the potential negative side effects.

Lastly I must say I too, like your Dad, found comfort in wearing masks because they contained the saliva spray; and I too am constantly cleaning phone, tablet, computer, and car interior.

Anita:
I also would like to thank you for your support and kind suggestions, and apologize for not responding sooner.

I believe I have addressed the issue of injections in my reply above, so I won’t waste your time repeating the same concerns.

I would however like to say I fully understand your husband’s hesitancy to accept this course of treatment. I hope he does well with whatever decision he makes and I wish you both all the best, and send my wishes for the best outcome.

Hi, Steve,

No apologies necessary. My husband has continued with the Botox injections as they seem to help, although they do not eliminate the issue completely. After consulting with another H&N surgeon, we decided the risk outweighs the benefit with the tether on the untreated side of his mouth (which is where the drooling is most prominent.) I wish you well. Like Vicky, our friends and family aren't bothered by Clark's drooling at all. Even with this acceptance from loved ones, it remains a very tough hurdle for my husband. Add that to his speech not being understood and difficulty eating, our social life is quite limited. However, I think we do an awesome job managing things. I've gotten more creative at making tasty pureed meals for him and we still play golf.

Best–
Anita

I find it interesting that you speak of the saliva problem just as I have recently encountered this problem. It will be 17 years since diagnosis for me in April and the saliva spewing has just started with me within the past couple of months. I no longer have need for any follow up care and wasn't sure exactly what medical specialty I should now see regarding this issue. I have had limited issues with lack of saliva over time but mostly while in bed sleeping at night or any time I am under stress for some reason. I would also like to hear from anyone else who has experienced this after being out of treatment for so many years. Thanks.

My husband was diagnosed 15 years ago. He initially suffered from lack of saliva, as was expected post chem-radiation. The last several years he has experienced exactly what you describe--excessive saliva with drooling and spitting. It is also interfering with his speech clarity which very distressing to him. He has always been naturally outgoing and social. He is shortening his conversations and not engaging with new people as he once did. Swallowing is also deteriorating. Between the two issues, dining out even with friends, is becoming uncomfortable for him.

He mentioned this to ENT at annual check. Nothing was suggested for excessive saliva. Scheduled for endoscopy due to instances of food getting stuck with severe hiccups.
I wonder if late side effect of excessive saliva has not been studied because in past patients did not survive this many years post treatment.