Husband diagnosed with tonsil cancer: looking for tips and support

I am curious why you were not put on a course of Keytruda or similar. This current track sounds as though if the cancer comes back they will try something else rather than insuring the cancer has no chance to come back.

Make smoothies with protein powder, even with weight gainer protein. And plenty of milkshakes. Very helpful in keeping my weight stable and even gain weight. Good luck to you. Keep a positive attitude, it really helps! God bless!

Hi @mattbrolly, you sound like someone who has been there. Do you have tonsil cancer or are caring for someone with a head and neck cancer?

Keep focused on the prize - beating cancer!

Good luck to you both. I mentor (listen and answer non- medical questions)folks here and there. Let me know if you or he or both want to talk.

I don’t know why - I had a NAVars test in December that was negative- I have an appointment w my dr tomorrow as a follow up- I will
Ask him- at the time of my surgery- last April - he said if margins came back clean - they would not do radiation- since that time - no positive NAVars tests - but many questions from people as to why no radiation-hopefully this was the right Decision- guess if it comes back - it was not!
I feel like I have to trust my mayo dr!! But I will definitely ask at my follow up appointment! They say I will do the NAVars test every 3 months for 2 years .

So far my husband had 2 chemo’s and 8 radiation’s, his mouth is getting sore, he said the end of his tongue is kind of numb, did you experience that? The dr said to keep rinsing with baking soda and salt rinse. I wonder if there’s something better.
Thanks

The last month been a nightmare. My husband is 78 and has tonsil cancer. He’s always had good checkups, tests were always good and he’s never sick so this is a shock. Our life now is stressful and we’re scared. The dr said the plan is chemo and radiation to knock this out, he’s stage 2 so they say it’s treatable . I’m so worried.

Although the taste of baking soda and salt is not appetizing, it is really one of the best oral rinses a person can have. However, you can down the road request what is known as Magic Mouthwash, a prescription rinse with Lidocaine(sp?). Several patients have had comfort from this.
Personally I found sipping on ice chips and water was some relief. Try to get his mind occupied with other things. It will probably get far worse in the coming weeks and he may continue downhill for days after treatment stops. It's not the end of the world but it may feel that way at times. Anti-anxiety meds may also be considered. Courage. We do get through this.

My 67 year old husband was diagnosed with stage 2 tonsil cancer in August, 2022. It was an HPV 16 based cancer so it was very treatable. He had the same treatment plan you mentioned—35 radiation sessions and chemo once a week for seven weeks.

What we learned: do what the doctors tell you to do. For example, get a port put in his chest to make chemo, blood tests and hydration easier. My husband had supplemental hydration sessions three times a week through his port. It hurt a lot to swallow and became impossible after four weeks of treatment. When he lost 15 pounds, they recommended a feeding tube. It sounds scary but it was the best thing he did because he was able to receive badly needed nutrition to help him heal. You may have to try a couple different formulas to find what works best for him. As soon as we got him properly hydrated and fed, he looked so much better and he recovered well. He lost thirty pounds total but has gained some of it back. He had the stomach tube for six weeks. He developed mucositis by the end of treatment. Get him a suction machine to help with this. Our ordeal was about six months from diagnosis to receiving a “no cancer found result” on his PET scan. Permanent side effects - He lost part of his ability to taste food and his salivary glands did not come back. And he cannot grow a full face beard - just a Van Dyke mustache and small chin beard.
He feels this is a small price to pay for being cancer free.

Every two months his ENT scopes his throat for any thing suspicious and his cancer center also follows him closely with scans, MRIs and blood tests.

In 2023, we did three major trips to Panama, Europe, and Australia. So there is life after cancer.

Hang in there, your husband will recover. Take care of yourself.

The last month been a nightmare. My husband is 78 and has tonsil cancer. He’s always had good checkups, tests were always good and he’s never sick so this is a shock. Our life now is stressful and we’re scared. The dr said the plan is chemo and radiation to knock this out, he’s stage 2 so they say it’s treatable . I’m so worried.