Reoccurring Head neck squamous cell carcinoma

CGMatson

They found my husbands cancer at the base of my tounge. I had 3 (all day long) treatments of cisplatin over a 3 month period plus 6000 gray's of proton (5 days a week) for 7 weeks, cancer was gone. Approximately 3 months later cancer was found in right neck lymph nodes. Had surgery to remove, 12 weeks later it was found again had surgery to remove, again. It's October 15th, and we have one group of doctors who want to do 30 more treatments of proton, thats another 5500 gray's plus more chemo and another doctor who wants to start immunotherapy with a little bit of chemo (this would be an infusion once every 3 weeks for 2 years). We don't know which way to go. My husband handles the chemo well as the proton but now 6 months out he has so much phelm, like glue, sore gums, sores on tounge, a horrible cough, unable to sleep. We wonder what 30 more treatments of proton would do? Any suggestions? We must make a decision by this Wednesday the 18th. We are all to familiar with the "hurry up and get started pace" we just need a push in the right direction. Thank you

BertChen

Sounds like your choice is between 2 months or 2 years.

I can very much appreciate the phlegm and sores being a factor. But as a family you all need to decide how much of life's days you want to give to the treatment.

All at once with the hopes of getting the disease targeted right now, or over time with the hopes it doesn't spread during the duration...

I hope whatever you choose, they get that bastich this time around 🫂

CGMatson

https://csn.cancer.org/discussion/comment/1709631#Comment_1709631

Thank you so much we had not looked at it like that. I'm so glad I found this site.

wbcgaruss

Hello CGMatson and welcome to the CSN H&N discussion forum.

You don't give the year on this so I assume this all happened this year.

You are on a short timeframe but consider the possibility of a second opinion. I would think if your decision went a day or two beyond the deadline it may be OK. If there is another doctor you can find to give you a second opinion to help, these days they can send all his info by computer, the scans, info, all of it can be transferred quickly for another doctor to look at your husband's case.

Where you are at do they have what they call a tumor board, a lot of cancer centers and hospitals have that, it is where all the doctors get together say on Wednesday, and go over all the cancer cases and talk them over and make recommendations on them. Then you have all the specialists in one room discussing your case, and hopefully, with all those specialists in one room, they can make a solid recommendation on your husband's case.

In one part you say "12 weeks later it was found again had surgery to remove" Was it found in the same place, the lymph nodes again or another area?

This is a tough decision for you I am sure.

The chemo and proton treatments do seem close together and certainly would be hard on your husband but I am assuming the doctors feel like he can handle it. As far as the phlegm there is one best way to handle it and I don't know if you are doing it, rins with baking soda and salt rinse. You have to keep at it by spitting out all you can, I preferred a plastic bag-lined waste can for that and paper towels cut in quarters to spit in. Next, you have to rinse as often as necessary even every 20 minutes if necessary, it helps the mouth feel better and keeps the phlegm pretty well cleared. I will post the recipes below for the salt and baking soda rinse.

So you could go for chemo and proton therapy but he has already had surgery and has gone this route with chemo and proton. If you go this route do the doctors feel confident that this will get rid of the cancer he has now? If so it may be worth it to go with proton and chemo as long as the docs feel he can stand it.

But what is troubling is the recurrence, have the doctors given any input as to his recurrences or maybe they are completely new cancers, do they feel that for some reason once he is treated this time that a new cancer or recurrence won't show up?

I can't remember who but someone else on here was on immunotherapy for a couple of years if I find it I will give you the posting. I believe the idea of immunotherapy is to shrink and stabilize any cancer your husband has and hopefully to shrink it a lot. I believe that while doing this it gets the cancer under control, on hold so to speak, with hopefully continued shrinking of the cancer he has. This treatment they are offering instead of the proton chemo route, the immunotherapy will hopefully shrink and stabilize any cancer and keep it where it is. I think they are offering this because considering his case it is another option that they feel confident in. I think they may also feel immunotherapy is a good option to consider shrinking and stabilizing his cancer and just getting things under control in light of the fact that cancer keeps coming back either in new cancer or a recurrence. I think it has worked doing this in some cases and it gives the patient and doctors some breathing room and they can watch the patient and may consider other treatment options later on a cancer that has shrunk with immunotherapy and is holding, they may decide to just watch it in case it starts growing again or do surgery and remove a smaller tumor later, which would be easier. I did some searching and I will also post info on immunotherapy below besides the salt and baking soda rinse recipes.

The U.S. Food and Drug Administration (FDA) has approved two types of immunotherapy to treat head and neck cancer: nivolumab and pembrolizumab. These drugs are checkpoint inhibitors, and they: Both work in a similar way by taking the foot off one of the brakes of the immune system, called PD-1.

https://hillman.upmc.com/cancer-care/head-neck/treatment/immunotherapy

Here is an excerpt and a link to another article..."Keytruda immunotherapy significantly prolongs survival for patients with newly diagnosed or recurrent HENT cancers"

https://news.cancerconnect.com/head-neck-cancer/keytruda-precision-cancer-immunotherapy-treatment-for-head-and-neck-cancer

Here is one more article I don't want to give you too much but you can click on them and just skim over them...

https://www.sciencedaily.com/releases/2022/02/220228170834.htm

Immunotherapy will possibly give you the time and space you need to check around and ask your doctors about any clinical trials that are available as another option to pursue.

So your doctors have given you 2 plans to consider, I hope this bit of input I have given has been helpful. I always trust in God and pray a lot about situations like this it helps in your decision to seek God's counsel.

CGMatson Here Are Recipes of Baking Soda and Salt Rinse

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.

Our motto here is NEGU (Never Ever Give Up)

So, Wishing You The Best

Take Care, God Bless

Russ

CGMatson

Good morning and thank you so much for your recommendations. This started October of 2022. The cancer showed up in his right neck lymph nodes ( after his chemo & proton) so his oncologist send us to Stephen Cancer, yes they have the tumor board. They removed 2 sac's lymph nodes plus partial portions of his jugular veins. The cancer showed back up in the same area so the removed a another lymph node. They do not see anymore cancer right now so thats why his care team wants to begin chemo and proton asap. He is scheduled for another petscan tomorrow so, with lots of prayers, they wont find anymore (he's about 4 weeks out of second surgery)so they want to start treatments Wednedsay! Thank you for the recipes for rinsing, he does rinse a lot throughout the day and night. Im just really concerned, can his body take more? Can he take more? I worked really hard to keep him positive, healthy (he only lost 8 lbs and he's gained 15 lbs back God is Good. However now his blood work is not good, he's not sleeping, a couple hours is all! He's thinking doing nothing he will live the rest of his life without all this torture! He knows HNSCC is very aggressive and doing nothing is the wrong decision. We pray a lot with God, friends and people like you we're sure to make it thru this hurdle. Again thank you so much, your information and experience are invaluable to us.

wbcgaruss

Dear lady your husband has gone through a lot, through the mill as we say. I am so sorry he is one of the few that cancer kept coming back on him. Most folks go through the 35 rads and 3 chemos and are usually good but your husband did not have that situation. I have had cancer 3 times and on my last one, I too had a jugular vein removed.

I believe they are right in going in now with proton and chemo to clean up any errant cancer cells since they are done operating and feel there is no more cancer now is the time to finish up and get errant cancer cells.

Prayers your way for the PET scan to be clear of any cancer-amen

I know your husband is weak, beat up, and feels terrible but it is best to get this follow-up treatment in. I know how he feels I was in that situation and worse. The last cancer I had was lymph cancer that had spread and I was operated on and it was successful but there were many complications and I spent 36 days and 6 operations in the hospital and it was tough. I didn't think I was coming home. But by the Grace of God is the only reason I am typing this to you today. God brought me through and my body survived more than I ever thought possible, Just Never Give Up!

I don't know your husband's condition or blood work but you are at a cancer center and they will keep a close watch on him and anything out of the ordinary, that is ordinary for this H&N treatment you can call the docs right away.

He is going to have to set a goal in his mind to reach for and get this done. I remember a lady on here one time said something that stuck with me and really resonates when going through this brutal treatment or any difficult cancer treatment. She said "I am doing everything I can to get through this treatment and will continue to do everything I can to get through the week, the day, the hour, the minute, every second, whatever it takes."

This is his job just to do treatment and go back home and rest and eat and keep going till he gets it done. I don't think he can have a better support system than a wife like you, together you are strong and will fight and beat this evil cancer. Thank God you are prying and believing folks, because prayer is powerful and there is nothing God can't accomplish and get you through. I will post a couple of videos below, they always inspired me and I hope they do you folks also. If there is anything I can do please let me know on here or private message me.

NEGU (Never Ever Give Up)

Wishing You the Best

Take care, God Bless

Russ

"I Held On"

https://www.youtube.com/watch?v=3fwYG32g5mo

‘Just never give up’: message from a cancer survivor

https://www.youtube.com/watch?v=MmbDV32lSyw

I Have Been Blessed (Eric Nafziger & Jeanette)

https://www.youtube.com/watch?v=8TG8Bb-6t60

CGMatson

First I want to thank you for your service. It sounds like you have had a difficult time but through the Grace of God your still here. God is Good. I will definitely show clips to George they are inspirational. And the words from that woman , so true. I'm going to print some and take to the cancer center. Again thank you and I'll let you know. Peace be with you. Connie

wbcgaruss

God Bless you Connie and your husband George and I am praying for a good outcome from all this after the battle is over.

Please tell your husband that he can stand and do more than he ever thought possible.

I had one minor and 2 major cancers and came through them all by the Grace of God.

I have written a paper of my 3rd cancer and my extended time in the hospital and the revelation of it all later and if you want to read it let me know and I will private message it to you.

If someone would have told me ahead of time that this is what you will face going through this cancer and here is what you will face going through this cancer I would have said I can't do it. But somehow not knowing the story and God's plan and just going through it day by day and before you know it you are at the end of your treatment and the end of troubles.

Here is a video that helped me during my cancer it is made by Ken Curtis. Ken Curtis was diagnosed with advanced cancer with little prospect for survival. He pursued a combination of traditional and alternative medicine, undergirded by a strong spiritual dimension and prayer support team. After fighting cancer for over eight years, Ken says, “I have been privileged to live an unusually full life. I have had extraordinary blessings, travels, opportunities, ministries, freedom, and honors, so, in all honesty, I do not feel like I can in good conscience ask for more. I am content to leave it in God’s hands. I am a servant of a faithful master whom I trust more than I trust myself. Surely goodness and mercy have followed me and I will dwell in the house of the Lord forever.”

Reflections on Psalm 23 for People With Cancer (2006) | Full Movie | Ken Curtis | Bill Curtis

https://www.youtube.com/watch?v=c98ddwbVE_g

I am Wishing You The Best

Take Care, God Bless

Russ

steven59

My first 25 rads were photon with the last 5 proton and the proton didn't aggravate the side effects from the photon at all, so I hope tour husband has an easier go of it.