Husband diagnosed with tonsil cancer: looking for tips and support

Hello @dloliver. Radiation side effects are unfortunately part of the process. However knowledge has improved in this area. Certainly when the tonsil area is radiated this will affect several vital areas of the throat and mouth.
Proton beam therapy is far more accurate and less destructive than photon but also in many cases more expensive and may be refused by insurance. A few places will often offer proton at the same cost as photon, Mayo Clinic Rochester for one has done this. Not sure if that applies to all or just specific cases but one can certainly ask.
Paramount question while in search of a radio therapy clinic and oncologist is "what is the experience in this specific cancer?" My radiation oncologist with years of experience only treated two patients with Squamous Cell Carcinoma prior to retirement, me being his first one. I had issues.
On the bright side, HPV16+ has been treated successfully with surgery and drugs (not Chemo) only, no radio therapy. This is only in the past ten years or so, so we don't know if it is everlasting. It won't hurt to ask a cancer clinic or large hospital with cancer specialties if this is an option.
I realize your world is being turned upside down, this is a battle you never sought. Never the less, this is something you now have to deal with, something that happens in life while you have been making other plans. I and others are here for you. I can listen to you. I can make suggestions and help you through the rough patches to come. I cannot carry you but I certainly will not leave you as I know the fight you are in.
I myself am now twenty one years out with issues in between that in time have been dealt with. Have lived a full life, traveled, loved my family and friends, and enjoyed each day God has granted me.
"Courage". "Never Surrender". Words often spoken by a man whose statue in Parliament Square Garden in London, whom I have often looked upon for encouragement, Sir Winston Churchill. Perhaps you could make a goal to visit that place some day. You will get through this.
Sorry for the long-winded reply.

William, thank you so much for the wisdom, encouragement, and information.

Hey Joy,
Welcome to the group.
Sorry about the news of your husband.
First off, stay positive and believe that the cancer will be defeated!

I too went through this during stage IV diagnosis. I had too much for surgery and was hit as hard as they could with 3 rounds of Cisplatin and 35 rounds of radiation.

Though it was very difficult for me as well as my family, we made it through!

I will be 7 years out this November and just now beginning to feel better.
I no longer see my oncologist but my family doctor as well as my dentist check me over very good during checkups.

Hang in there and fight the good fight!

Feeding peg and port are much needed so don’t refuse them!

MOJO

Thank you for the question. I had radiation and am 8 weeks out of it. The side effects to radiation are tough for sure and I still battle pain and fatigue. I hear it takes a year in some cases more.
All that said I would be interested in the answer to your question. Is there an alternative treatment?

Thank you @davehutsell, I’m glad to hear you are on the other side of the treatments. Were you able to get enough to eat and drink durning / after treatments ?

I lost 40lbs over the 14 week period. I have stabilized for the past month. I did not get a feeding tube, in hindsight I probably would have gone that route.
My basic daily intake is 4 to 5 high calorie Boost, a scrambled egg, cream of wheat cereal, 1 cup of coffee with cream and honey, I drink Gatorade mixed with water and apple juice diluted with water. I drink as much as I can. All in all I don’t think I will gain weight or feel normal energy wise until I get back on solid foods. That will happen when my throat stops hurting. That is getting better but still prevents me from eating solids. It’s a battle for sure. I believe it is winnable.

@dloliver my cancer was near the vocal cords, the "Pyriform Sinus." On this site, I have written extensively about my experience with radiation, and other facts. One is "Red Light Therapy (RLT)." You can purchase a little wand for under 20 dollars. My views on this therapy are very positive. This is because after a slow recovery and two "Swallow Studies," my ability to eat, drink, and talk, returned after approximately one year. Also, after radiation was over, the speech therapist prescribed many exercises of the mouth, tongue and throat muscles. According to the research online, RLT has proven to have positive implications on radiated tissue.
As for alternative treatments, I tried several methods like no sugar, molasses and baking soda (I still shudder), etc. They did not work for me.
Lastly, the Oncologist explained that Chemotherapy would increase my survival chance by 1-2 % with a huge risk of hearing loss. I chose to not have the process.
I wish you the best and remember that time will heal.

Is there a video on how to use the wand? I am interested.

My husband also has been using RLT post treatment. It has really helped with edema. There is scientific studies that confirm its positive effect on animals, but not human. Hubby said, if it’s good enough for my dog, it’s good enough for me! His SLP gave him self treatment exercises to help drain the the lymph nodes and it is really helping. He lost 42 lbs during this journey, and is now working on increasing his muscle mass. He did lose a lot of muscle mass, which is unfortunate. I tried to encourage him to keep up with strength training, but all his strength was used up with just trying to get enough nutrition and fluids into him. He is suffering with back problems, something he has never had before and I suspect the loss of muscle is the cause.

As well, his Oncologist did explain the exact same thing on the 1-2% increase with the addition of Cisplatin, with the risks associated for his age of 70. He also chose not to have the chemo, and did 35 rounds of radiation.

He is scheduled today for a PET scan. Fingers crossed he has beat this demon we call Cancer down!

@davehutsell, I never had a video. The wand was waved around way back in my throat, teeth and all inside my cheek area for ten minutes in the morning before treatment. I would do it again in the evening too. Did it work? I honestly cannot say for sure. There are people who have not used the light, and after many years they have no ability to eat, drink and/or speak. It is very heartbreaking. Best wishes to you.