TORS/Radiation/Chemo

NKeeper33

Hello All

I am here seeking insight related to my husband's recent diagnosis and treatment plan. In August 2023, he was diagnosed with HPV+SCC left tonsil and 1 lymph node. He underwent TORS last week. Surgery was successful as far as that goes, primary tumor removed and everything had at least 3mm of clear margins including removal of 20 nodes. Only 1 came back cancerous no PNI or LVI. However , it showed extranodal extension of >1mm based on the pathology report (aka high risk). He is still considered Stage 1 but will now need chemo and radiation. He will be doing 5 weeks of lowered doses due to de-escalation protocols. Wondering if anyone else went through de-escalation with ENe and the outcome? Also, did having ENE impacted your follow-up care? Thanks!

NKeeper33

He is T1N1M0.

wbcgaruss

NKeep, welcome to the CSN H&N discussion group. You are welcome here.

It is common to have follow-up radiation and chemotherapy post-surgery to mop up any errant cancer cells that are on the microscopic level and can't be seen. This is difficult but surely doable, many have gone before him and successfully completed radiation and chemotherapy of 35 treatments and several chemos or more depending on the case. With de-escalation protocols it will probably be a bit less difficult. Very thick saliva is one of the things he will encounter with this and the trick is to spit out whatever you can and stay refreshed with a salt and baking soda rinse which cleans and refreshes the mouth and help get rid of the thick saliva. I will post recipes below.

Also, did his care team mention getting a port or feeding tube put in? If they recommend it I say get whatever they recommend, it is for his good and to make treatment easier. There are many cases that this is not mentioned, his care team will know by his cancer case and the treatments prescribed whether they will recommend them or not.

So you are wondering if anyone else went through de-escalation with ENE.

I don't know about the ENE part but we recently had a fellow go through a de-escalation protocol and I am posting the link to his post below. His posting started August 28th.

https://csn.cancer.org/discussion/326980/de-intensification-clinical-trial

Also, I did a general search of the site with many results and I searched de-escalation 2 ways one with the dash in the word and one without the whole word deescalation as one. The first search is with the dash, there are different results for each here is the link for that and it seems to have newer results in it...

https://csn.cancer.org/search?domain=all_content&query=de-escalation&scope=site&source=community

And here is the search without the dash in the word deescalation and I think this gives some good results also but more older but valid results for people using de-escalation.

https://csn.cancer.org/search?domain=all_content&query=deescalation&scope=site&source=community

I was pretty amazed at all the results for de-escalation and I hope this helps you in some way. I will post the salt and baking soda recipes below.

Wishing You the Best

Take care, God Bless

Russ

NKeeper Here Are Recipes

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.

NKeeper33

Thank you WCBGRUSS! I will look at all those posts. We are seeing med oncologist today and radiation oncologist Tuesday. I am hopefully that he will make it through this as I know many have traveled this path before us. We were hoping that everything would be clear after surgery but that is not the case; however they were still able to get clear margins with the ENE. Will post an update when we have more information and will reach out to Smitty.

wbcgaruss

Very well, NKeeper.

Wishing You the Best

Take care, God Bless

Russ