Dear AJ

Couple thoughts. It took a long time, many months, for my tongue and mouth to heal. You will likely still notice improvement many months out. Ugh, the potential of cancer coming back is such a catch 22. It is totally logical and fair to be worried about it but on the other hand stress is related to it. Keep doing what you are already doing - stay on top of it. Besides my family and friends, my best source of peace relative to cancer returning is faith. Through my cancer surgery and treatment I had life changing experiences that built my faith to a level I never thought possible. And living gratefully is a daily routine. Finally, I suggest a book and a quick internet read. The book is called Anticancer and it is stuffed with tons of data on how to live a life to reduce cancer chances. To find the internet read, Google "Cancer is like a lion in the fridge." Makes me laugh and cry every time I read it (at least a couple dozen times now!).

Stay safe and keep the faith!
Nels

I have had 3 oral cancer surgeries. 2004, 2007 and 2022. I have had 62 radiation treatments from 2004 - 2007 and another 5 “radiation love taps” to my partoid gland in 2022.

I have a fountain of saliva and while the radiation love taps to the gland helped tremendously - it didn’t last long, and it caused a sore in my throat so I don’t want to do that again.

I currently use a water pik with alcohol free mouthwash a couple of times a day (using the GENTLE tips and lower pressure of course) plus a suction machine plus the pink foam sticks to clean my mouth. I go through Kleenex Handtowels like I own shares.

I cannot swallow at all due to side effect if last surgery which removed my bottom left jaw plus some of the back of my tongue. I am ok with the PEG tube feeding (except for all the CLEANING of everything- which seems to take a great deal of time) but this fountain of saliva is driving me crazy. I hate that when it is bad, if I bend over I drool onto surfaces. Constantly wiping my mouth or trying to clear my mouth is horrid.

I think I can deal with the thick mucus much easier than this excess saliva. The water pick, humidifier and getting lots of liquids in your dirt really help reduce that problem. But this Saliva!!!

Tell me about this Breathe Right Roll on I heard about on Facebook?? Apparently you roll it onto the skin around your ear and it slows the saliva. I have never heard of that.

Has anyone tried the medication Glycopyrrolate (Cuvposa) or any other? Has anyone had a saliva gland removed?

HELP!

Donna (Pandora 99).

I'll be going in for my 4th OC surgery in twenty years and this will take out my remaining lower teeth. For the last eight years I have had a partial denture that was anchored to my soon to be lost teeth. I beleive I'll be able to keep my original uppers.

What have people experienced with no lower teeth? Eating, speaking and how long before dentures? I do not expect to have radiation.

Hello bjk,welcome to the group, hard part for me was chemo and radiation and days in hospital after surgery, you have completed hard part.I had my first pet scan after treatment also after swelling went down and every 3 months I had ct scan if you have any questions just ask Goodluck.

Thanks for the clarification. I wish you well with your treatments, please come back to tell us what you decided and how they are going. B

I remember at least one other forum member reporting difficulty with excessive saliva production, also staring approximately 10-12 year post treatment. Initially my husband suffered from the usual thick saliva and dry mouth syndrome.

I wonder if hypersalivation is not reported or well studied due to the fact that in the past patients did not survive long enough to experience some of these late-term side effects. I will discuss this with ENT at next appt.
I doubt that there is a solution and it will most likely be added to all the other horrible side effects of chemoradiation for oral cancers.
Lottie

I second staying away from Google and oral cancer stats. All your life you have been told “you are unique - there is no one like YOU”. Well, you are going to find out that is true. My oncologist surgeon would never give me a prognosis (I was Stage 4 twice) - he would always say: “I can’t promise that you will get home safely”. And he was right. No one can predict what is going to happen with YOU and how YOUR BODY will react to the treatments. We are truly individuals - and it will never be more apparent than with this disease.

Don’t catastrophize. Take every day as it comes. Cancer is a thief. It steals the treatment time and it steals other time from your life when you let worry overtake you.

Step by step. OCF is here.

Donna (Pandora99)

Sounds like you had a good time and learned a bit. You sound like you were very well prepared. I hear you about trying to wash everything in a hotel. Frustration. I finally took to washing my blender in the bath tub.

You did a lot of great things - pre-grinding your meds and taking liquids. I have a case made for my Vitamix - bought on Amazon and it works great. Eliminates those “play blenders”! For a short trip I take all my meals - frozen. Works well for me. I think about packing pre-tube and am amazed at how much stuff we have to take along - but it is a fact of life.

I took 72 tetra paks of formula to Mexico. In one 50 lb suitcase which the airline allowed up to check for free and the rest spread amongst other luggage. When in the UK I ordered formula from Amazon, and blended other meals. I learned the term “take away “ in the UK!

Glad you are home and made out well.

Donna



!
,

Your diary has been a welcome read for us. My BF is on Day 24 of 33 day radiation regimen, with concurrent Cisplatin once a week for six weeks (one more to go) for oropharyngeal cancer in throat, tonsil. It had been progressively getting more challenging but the last few days it seems to have gone strait off the rails as far as mouth pain. Where before he could tolerate broths, thin soups, Boost high calorie, now everything burns, and swallowing virtually anything is like knives in his throat. He has the Magic Mouthwash which helps a bit. Was there anything that you found that helped with the miserable mouth pains?
Thank you for your inspiration too- we know it’s temporary - just hard to handle on hour to hour basis when getting next to nothing down.

Louis: Sorry to hear that he's run into this at his age and condition. I can't say much about AFib, radiation or chemo but I can tell you that the decision to have the ENT inspect it and then to move on to an Oncologist were both good decisions in my opinion.
That said, it comes down to the options available and picking the best one. It appears that the family is already doing that, so keep up the good work.

Patience,

Welcome to OCF and so sorry to hear of your diagnosis. There are lots of people here who will help you. The list shared from Pandora is solid. Once you have more details, please post them here. We can offer suggestions on how to cope and recover but it really depends on the procedure details and post surgery treatments (radiation? chemo? etc).

Best,
Nels

Hi Matt,

Welcome to OCF and thank you for sharing your experience. Many wonderful people here that contribute and help each other. Oral cancer is kind of an unknown amongst the general public. I had never heard of tongue cancer until my Head and Neck doctor confirmed it. I had only heard of throat cancer and ignorantly thought it was tied to heavy smoking.

Glad you are doing well and took it upon yourself to get this checked out. My first dentist didnt really raise the alarm bells with me either and it was about a year of my knowing something was going on before I saw a new dentist due to switching insurance. My second dentist jumped all over it.

Best,
Nels