4 weeks out of treatments

scottyM

Hi, I'm new to the group. My name is Scott and I was diagnosed in August of 2022 with Metastatic Squamous Cell pos. P16. It has been 4 weeks since I finished 35 rounds of radiation and 6 of chemo. I am wondering if there is anyone on here who have went through this and how they are doing after treatments.

wbcgaruss

Hello, Scotty, I went through 35 rads and 3 chemos and I am doing fine except for some normal lingering after-effects that are common to the treatment regimen. That was for throat cancer. I did not have the same cancer area you had.

Can you be more specific on questions you may have, maybe we can help?

Take care, God Bless-Russ

scottyM

https://csn.cancer.org/discussion/comment/1702052#Comment_1702052

Hi. I'm having trouble with this awful icky taste in my mouth and not being able to eat because of it. Did you lose your taste buds of so how long does it take for them to come back

wbcgaruss

Scotty, it varies per individual how long it goes before you start getting your taste back. Four weeks out of treatment is not very long in H&N treatment. I believe people try to relate illnesses they had before and compare them for recovery, but there is no comparison. This is a long slow process measured in weeks and months. I would say maybe 8 weeks out of treatment, 2 months, and see if you have any taste yet. You will get better and recover it just takes time. Be patient with yourself and get plenty of rest and eat as much as possible. I know it is terribly difficult to eat with no taste I have been there, you literally have to get the number of calories you need each day and force yourself to eat it. Not enjoyable at all but this will pass in time. I would recommend trying the salt & baking soda rinse as often as needed to clean out and refresh your mouth, it has helped a lot of people. I am going to post an answer I typed up earlier to another gentleman and I think you may get some insight out of it and perspective, and the rinse recipes are in that, it will just be a continuation here. I will put your name.

Scotty, 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 a "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. I too was like you for a while, extremely tired. You have to push yourself a little to do some walking or chores, it’s better for you. But I’ll tell Ya when I was so tired like that when my rear end hit a chair I was sleeping in no time. This will pass too it just takes time. Let me say again recovery from H&N treatment is not like a cold or flu measured in days and weeks this recovery time is measured in weeks and months and it could take up to a year. For me, it was about a year after starting till I felt like I was fully recovered. But you will be better before that, just not like you are fully recovered. Give it another couple of months. 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

motorcycleguy

Scotty,

I remember getting done with treatment ... and having the same troubles you're experiencing.

As Russ says, the baking soda/salt mouth rinse helps. I used that 8-10 times a day.

Other than that - all I can say it is takes time. Radiation and Chemo knocks out your taste buds. I had an Oncologist tell me that taste buds regenerate, every 6 months - so with that, all I can say is that you WILL be able to taste again .... but it may take another couple months.

(It seems like it took me 3-4 months, after treatment - before I finally was able to consume chicken wings and beer ... and it was SO GOOD!

Hang in there, bud!

MG