Although I’m happy to be alive 17 years after my initial diagnosis of oral cancer, I have experienced a host of long term side effects from treatment. Throughout these years I’ve been able to “get over” many insecurities and have learnt to cope with the others. What I’m finding most embarrassing —I cannot speak without spewing saliva everywhere. I experienced this problem prior to having all my teeth extracted however it’s severity has greatly increased since then. People move away from me when I am trying to engage in conversation, even my doctors. I can clean my tablet and phone screens, yet after a very short time using the phone on speaker, I can see a filthy, spot covered screen; and even my tablet. I don’t usually speak at my tablet, so I’m figuring the spray comes out even when just exhaling. Has anyone else experienced this, and if so please tell me how you handle this. Thanks.

Hi Stephen, its been a long time since I have been on line here, but yes I have the same thing and I have only been out of radiation for the past 12 years, I am kind of happy that I always wear a mask now due to spitting and chipping teeth. I usually just carry a napkin or cloth one, not sure but I can ask the oncologist that I am seeing on Monday take care, Michele

Thanks so much for sharing your struggles. At least I know I’m not crazy. What I’ve experienced is lots of loving friends and family who will simply dismiss my concerns, and say things like, “No, you don’t spit when you speak.”, etc, but I know they’re just trying to spare my feelings. I wish people could just tell me the truth. I totally understand the chipping teeth issue, I went through it and ended up having them all removed. For me now, it’s been 11 years since, and 17 years since cancer diagnosis. Funny that you should say wearing a mask gave you some sort of comfort; I felt the same.

Hi, StephenS,

My husband is almost 14 years out from diagnosis and treatment. He has difficulty with drooling---late effects of radiation and surgeries. He has been working with a speech pathologist who has given him exercises to help improve his swallowing. We're hoping this will also help him control the flow of saliva. The SP said that within the last 5 to 6 years, there has been more emphasis on working with H&N cancer patients right after treatment. The only time we saw a SP was after my husband had his trach removed, kind of a "one and done".

Maybe a SP can help you, too. We're hopeful that he can get some relief, however it has been a long time since diagnosis. We'll have to see how this plays out. Best of luck to you!

Hi Steve, yes I get it. ..........I drool , especially when I sleep. Wet around me when I gee up. Also, when I fly and take a nap, It looks pretty bad! But so what, as you said...happy to be alive. My personal experience when I spit of blow food out is that most folks appreciate that I am still trying to live As the saying goes...the new normal

Good luck, Steve

I know it’s been some time since I asked the original question, and since you were kind enough to respond. I’d like to thank you for your openness and want you to know how much better your post made me feel. I don’t mean to imply that I’m happy someone else is going through this too, I’m just happy to know I’m not alone.
All the best wishes for you.

It’s the strangest thing, and although I read all about side effects, both immediate and long term, I never read about the spitting issue.

Hope this helps others out there who are experiencing this syndrome.

My dad had Stage IV cancer twice, and had two mandiblectomies, chemo, radiation and a wide mouth resection. Right after his second surgery, he had a lot of drooling because his mouth was so swollen it wouldn't close. He has some nerve damage and they removed his gums on one side, so he has a hard time containing the spit. He said when he lays down, he has dry mouth, but when he's sitting up, he has more than enough drool.

We met with a speech therapist shortly after the second surgery. She said sometimes people will get injections into their lips to help with some rigidity, or to make the sides even, or to help the lips seal. She said they also make little tablets you put in your mouth to dry up the saliva that's in there. She taught him some exercises to do several times a day to help with making certain sounds and closing his mouth. In the end, three years later, dad didn't do anything about it, but I know it bothers him. He wears a mask out in public (thanks to the pandemic) and that has helped a lot with his embarrassment. He also cleans his computer screen all the time, and doesn't eat in public if he can help it. Sorry I don't have much helpful information. I wish you luck! You're not alone. For what it's worth, no one else in my family is embarrassed that my dad spits. We're so glad he's still here.

HI, Steve,

Three months ago, my husband and I met with another H&N surgeon who injected his parotid glands and submandibular glands with Botox. It is helping. He has since had a second visit with additional Botox. We will continue this as long as it is helping. One thing she noticed was that his lip, on the opposite side of his mandibule rebuild, droops as compared to the affected side. Radiation had tightened his lip which makes the untreated side droop. She suggested we speak with one of her colleagues to see if he can tighten the droop by pulling up the corner of his mouth with a tether. Sounds really promising as it would give my husband another way to contain saliva instead of leaking out at that point. I'll let you know how it goes. My husband has not yet decided to do this procedure.

Sending my best to you.

Hello and thanks for sharing your experiences. I would also like to apologize for not replying to your post earlier.I have no excuse. Sometimes I become so enveloped by the day to day responsibilities of my life; sometimes I become so exhausted from caring for my Mom who’s an octogenarian; sometimes I succumb to depression and my way of coping is withdrawing.

I truly appreciate you taking the time to post some encouraging words. It is reassuring to know that I’m not the only person who has been suffering through this issue.

I hope you are well and wish only the best for you. Thanks again.

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.