Tongue radiation

SLapinsky

I didn’t realize it would be so slow and every day would have new symptoms. The treatment stopped after 6 weeks and doctors said everything is owing great. I don’t feel so great. Every day it’s either my mouth is extremely dry or the next day it’s full of heart saliva. Does it get any better. It’s already seven weeks after final treatment. Does it take months or years to feel normal?

wbcgaruss

Hello, Slap, and welcome to the forum.

I just recently answered a post 15 minutes ago about much the same thing about the length of treatment recovery and I am just going to repost it here also.

Welcome to the CSN H&N forum, sorry you find yourself here but glad you found us.

I also had throat cancer and received 35 radiation treatments and chemo beginning, middle, and at the end. I also had pre-treatment chemo to shrink the tumor.

My team made me aware of the severity of the treatment before I ever started and I thought I had the idea of the whole thing.

Note: My radiation nurse told me I might as well figure a year off my life till I get done dealing with this. Meaning treatment and recovery, and she was absolutely right.

You see they deal with these cases for a living and have a pretty good idea of what’s going to happen in each case depending on treatments. But then there are all the variables. Each case is a little bit different as per cancer, how big, location, etc. And not everybody gets all the side effects or even a few, some don’t have many at all and some get hit hard. Your team can’t predict how you or your body may react exactly, they can only tell you of the possible effects and help you deal with them when it happens.

But all the beforehand awareness they gave me didn’t match the actual treatment and recovery and the reality of the effects I would face. It was nothing like I had in my mind, figuring I can handle this and it won't be that bad. Well, the reality is it was a really rough time. After so many treatments you start to slowly feel the effects and then many times it continues till you are recovered.

I too was miserable, lost my voice, and my food had to be able to be eaten as you say in a mashed form or something like oatmeal form. Until I just couldn’t get anything through anymore and just used the PEG Tube which was already installed. In fact, my team would not start treatment till I had a PEG.

I too had thrush a couple of times and a swollen Parotid gland from the radiation of which I had a fever and spent an extra 6 days in the hospital because of it.

What you have experienced and continue to experience is not unusual for H&N cancer treatment.

Your spitting extra saliva is usually due to the radiation and it is usually very thick. You are about 4 months out of treatment and I would think that the saliva thing should be greatly diminished by now but every case is different. Have you been using the Salt & Baking Soda Rinse to help keep it cleared out and your mouth feeling better, rinse as often as necessary?

For the salt/baking soda mixes.

Rinse as often or as little as needed to deal with thick saliva even the stringy stuff.

The trick is to stay ahead of it as best you can.

There are no easy solutions but this will eventually quit.

You may find it beneficial to sleep in a recliner to keep the thick stuff out of your throat and airway.

Laying down directs it to the back of your mouth/throat area.

Even in a recliner I would wake up at times with my air cut off and had to work at getting it cleared out.

Wishing You The Best-Take Care-God Bless-Russ

Mouth Rinse Recipes to Use During Chemotherapy

Soda and Salt Mouth Rinse

1/4 teaspoon baking soda

1/8 teaspoon salt

1 cup of warm water

Mix well until salt dissolves. Rinse your mouth gently, being careful not to swallow the mixture. Follow this with a plain water rinse to clean out any remaining salt or soda.

Soda Mouth Rinse: A Good Rinse for Before You Eat

1 teaspoon baking soda

1 cup of warm water

Mix well to dissolve the baking soda. This is a good rinse to use before and after a meal because it may soothe any mucositis pain you have, making it easier for you to eat well. Swish and spit, but don't swallow this mixture.

Saltwater Mouth Rinse

1/4 teaspoon salt

1 cup of warm water

Mix well to dissolve the salt. This saltwater rinse is close to the natural chemistry of your own saliva. This may make mouth sores feel better. Rinse well with plain water to remove excess salt.

Salt and Soda Rinse for Gummy Mouth

Some chemotherapy drugs can increase the acidity in your mouth, leading to thick saliva that can be very annoying. This rinse works well for "gummy mouth."

1/2 teaspoon salt

2 tablespoons baking soda

4 cups of warm water

This rinse will help to neutralize the acid in your mouth and will help dissolve or loosen thick, gummy saliva. Don't drink it, just rinse and spit it out.

Peroxide Rinse for Crusted Sores

If your mouth sores are crusting over, it's important to allow the natural healing process in your body to continue, so a peroxide rinse should be used for no more than two days consecutively.

1 cup hydrogen peroxide

1 cup water or

1 cup salt water (1 teaspoon of salt in 4 cups of water)

If you have crusty mouth sores, try using this rinse three or four times a day for two days. Don't use it for more than two days at a time, because it could prevent mucositis from healing.

Use a non-peroxide rinse for two days, before returning to this mixture.

Gregory, you will be getting better for sure, it is just going to take a while. The days all seem the same for a while, you feel crappy and are dealing with everything that goes along with your treatment and recovery, and suddenly One day you wake up and feel just the tiniest bit better, and then the next day, and you will know you finally turned the corner. Recovery from H&N treatment is a slow process measured over weeks and months, not days and weeks. I am sure you are thinking you should be much better by now but it is not unusual for recovery to take up to a year and sometimes more. Usually, it doesn't take a year in most cases but still at only 4 months out you may have a ways to go yet. Just be patient, relax, and you will get better. For now, concentrate on nutrition and rest, and keeping the saliva situation under control. Getting in as many calories as you can and resting are very important but some physical activity is good too like walking or exercising, doing stuff around the house, whatever you can do and tolerate and feel good doing, getting moving again is good. And if anything seems really unusual run it by your care team that's what they are there for. And we will help on here all we can.

Wishing You the Best

Take care, God Bless-Russ

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