20 weeks Post Treatment What to Eat?

My husband had tonsil cancer, 35 radiations and three chemo’s. It’s been nine months and he still has trouble eating, it’s hard going down, need water more with some foods. Meat is hard to eat so I’m always fixing things that’s easier. He still can’t gain his weight back, he’s getting 2,000 calories a day.

Hello. I had tonsil cancer in 2008. 33 radiation and 6 chemo. I cannot recall how long it took me to "get back to normal" with regard to eating. But for about 10 years I was pretty much able to eat normally although dry mouth was always an issue.

Somewhere around year 10 I started with swallowing episodes. Not choking, but things getting caught in my throat. I'd go off with a glass of water, sip and cough the food out. My surgeon said it was failure of the soft pallet in my case. I've learned to chew and drink more when eating. I also determined, that in my case, eating (swallowing) and talking are "opposing forces". Meal time can be fairly quiet (perhaps my understanding wife likes that LOL).

I can pretty much eat anything if I am careful although I typically avoid rice which is especially troublesome. I also seem to do better at lunch vs dinner (fatigue as the day goes on?).

Note we are all different with regard to what side effects hit us and when, However, swallowing issues, dry mouth and fibrosis seem to catch up with all of us. Given that, I attached papers which describe swallowing and neck exercises I do every day. I would have started these right after treatments had I known the long term side effect issues.

Hope this helps.

Thank you for sharing your experience and the exercise sheet. I was indeed told to do these exercises going forward pretty much forever but admittedly I'm already not doing them as often as I should so thank you for the reminder to stay with it.

While I did not have tonsil cancer I did have 35 doses of radiation and 6 chemo treatments to my neck and throat for Squamous Cell cancer at the base of my tongue. As I remember back, I was still pretty tender at 20 weeks. Still drinking Hi Cal Boost for breakfast and lunch and soups for supper. I am pretty much back to normal now with solid foods. Some foods I used to enjoy just do not taste as good but all in all i I am so much better now. 20 months vs 20 weeks is a big improvement. Hang in there.

Great feedback much appreciated!

I lived on milkshakes for many, many months after treatments. It certainly will improve, but don’t expect things to change overnight. Your body went through a war! It gets better every week. I’m a year and-a-half post-radiation and I still have trouble with dry mouth and not liking certain foods. I agree that it beats the alternative! Keep your head up and look to the positive. Pizza will certainly be in your future 👍

Thanks jersey3422. I hear you, definitely drinking lots of shakes. Also, for others out there my go to food is mini wontons (frozen food section of local supermarket) in chicken broth. Goes down better than everything else I've tried. This is generally lunch and dinner supplemented with various shakes.

I think you will find as time goes on (months/years) that more foods can be added to your diet. Lack of saliva eliminates several food choices such as bread, rice, meats such as chicken or pork (dry) and biscuits and so forth. Twenty weeks out is not very long. You likely will experience changes at least to the two year mark and eating should improve. It is doubtful you will ever be back to the way you were pre-cancer.
For me, I could not touch a meal without a liquid such as water at easy reach. In a restaurant I have had cold meals because I had to wait for a water. Things have improved over the years.
My throat has issues which do not improve and that's just the way it is. You will be OK as time goes.

I had chemo photon radiation (35rounds) for left tonsil cancer back in 2008 and to help with the dry mouth tried electrical stimulation acupuncture in 2015 where I was tested to get a baseline and retested after 8-10 appts. and had great results. Never needed to go back and it's still good today.

I got this from my newsletter from my other cancer group SPOHNC! and it mention AQUAx2 which is a clinical research study for people with moderate/ severe dry mouth (xerostomia) caused by radiation therapy purpose is to assess the efficacy and safety of "gene transfer" study drug called AAV2-hAQP1.

Hope this helps.

I found some great cheese, broccoli and vegetable soups on Pinterest. I use an immersion blender to get the right consistency. At first I blended it more. Now 1 year from surgery I leave a few chunks. I also learned to put a bit of olive oil on my meat. Also try a hot drink like coffee or tea ( I do decaf). That seems to improve my swallowing of some foods. I actually had pancakes last weekend! Woohoo.