Husband diagnosed with tonsil cancer: looking for tips and support

Hi Brad. It seems like such a dilemma sometimes, to know what the best course is. I guess it really boils down to you being your own best advocate when it comes to your healthcare..
Personally I am wishing for the day when we can completely get away from radiotherapy and on to some medicine that cleans it all up. We are almost there now and the strides made just in the last few years are amazing. Radiation has caused me more problems than most people could ever imagine. I'm still alive 23 years out but it has been a fight at times.
Hope things work out well for you. I was about your age when I went down the rabbit hole. I wish no one would ever have to join this club. Good healing.

same situation! Each person is different.

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.

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.

How long did it take to feel a little better once treatment was ended for him?

How long did it take to feel a little better once treatment was ended for him?

Hi @cris2 Now that a couple weeks have passed since your husband has completed radiation I would suspect that the bottom has been reached and he is finally on the way to recovery. Is that correct so far?
The uphill climb will be slower than you or he would expect simply because so much damage to good tissue has been done. The body needs to heal but has a lot of work to do. My feeling at this point is to do what he can, eat what he can, and try to stay active. Avoid contact with sick people as his body is taxed with recovery and has little else it can do to protect him.
This is all going to be slow. New things are going to pop up that you may have to deal with such as mouth sores for example. The mind turns to the worst as every little thing can make him worry that the cancer has returned, it almost 100% has not. That feeling goes away, well, it's only been twenty three years for me so I will have to get back to you when that feeling goes away.
In the long run he will return to what we call a "new normal". A normal that may have some lasting issues that we learn to cope with. A normal that perhaps makes us appreciate life on a better level. A normal that makes us hug a stranger in the grocery store who is going through Chemo. A normal that seems to get better every day.
Courage. Can you keep me up to date to his progress?
Thanks.

It’s ended, he’s sleeping more feels exhausted. He can eat some, just forces himself. I worry he’s not getting enough calories, but he’s eating. He thought the scale would go up in two weeks and it didn’t, is that normal? Probably is awhile until he can gain. He couldn’t even walk around outside with me he’s so tired. I hate seeing him like this. This was a man that chopped his own wood , did woodworking and everything in between. He hates that he’s so weak now.
Thanks for asking.

It all sounds good. If he is up to it, it is okay if he wants to eat an entire pie. It will take weeks or months to put the weight back on. If he wants a milkshake, enjoy!
The fatigue should begin to go away soon however if it does not, get his Thyroid checked. Radiation can damage the thyroid sometimes. If his TSH is high or low, this scan lead to overwhelming fatigue. Or he may and probably is just tired whilst healing.
Get him walking, even if its just to the street and back. Not moving is not allowed. I don't know where you live but I will be happy to come there and kick his butt. A lot of work went into curing him. Now he has to do his part. This is said with love by the way, in case he asks.
Courage.

Ha Ha! We live in Michigan,
I read this to him and he just listened, I said you have to keep moving.