After radiation for HPV neck cancer: Hang in there, it gets better

@sepdvm it's been five and a half years since my treatment ended. I have almost zero taste, none of which are trustworthy. In any case, I just eat and accept that I can't taste. I just try to eat things that have lots of textures.

@kent8692, I expanded your title to give others hope as they go through radiation. How are you doing now as you approach almost 3 months? What is one thing you wish you had known?

@colleenyoung I wish my team, anyone that is, would have Clearly and Completely explained the truth about how much damage radiation can cause to head and neck because if I had known then what I would be going through now I would have made some different decisions. I likely would’ve had more dental work taken care of even go through getting teeth pulled out and implants put in. Now I am extremely limited in my choices and risk of infection is extremely high. I might’ve given more consideration to not having the radical neck disectomy because of the damage it did the numbness from cutting nerves that likely will Never heal. My surgeon told me there was a chance that nerves could get cut but that he’s going to do his best to be careful… making it sound as though he would be able to perform the surgery without the resulting damage. I am grateful to be alive and up until about a week ago I thought I was still cancer free. My surgeon sent me for CT with contrast one week ago for a hard lump where my jaw meets my neck. The scan was severely degraded due to prior dental work and I’m still waiting on a response And praying it’s not cancer related. I’m about 2.5 years out from the end of radiation and still haven’t been able to gain weight back even with the high calorie boost mixed with vitD milk twice daily and regular meals. My appetite is still very low and I’m still tired too much of the time. I’m wondering why. I thought chemo caused more problems than radiation and was glad I was told that I didn’t need chemotherapy and that radiation would take care of my needs. I just wish More Emphasis was actually placed on defining what radiation and chemotherapy could do versus radiation or chemotherapy alone. I don’t mean to sound ungrateful because I’m definitely grateful to be alive. I just wish that the medical professionals would have been completely direct, transparent, and even blunt about everything. Especially when I told everyone to not hold back and to just be completely honest and direct.
This all feels like too much especially when now I’m really kind of fearing the worst again.

My niece had Head and Neck Cancer.
She had radiation over a year ago, had a feeding tube placed last year, still struggling with taste and saliva production. Any suggestions from anyone?

if it helps try to eat as healthy as you can. I can't eat much 16 month post CRT. I lost 50 pounds and mostly survived on Boost high calorie for awhile. Try High protein oatmeal. Make it a little juicy and it goes down smooth. Always add blueberries, bananas or some fruit. In the beginning I found Liptons chicken noodle soup in the pouch was good. I ate so much of it i can't stand it now. Mostly anything you can add a little sauce or gravy to makes it easier to chew and enjoy. Smoothies are good. Add protein powder. You can even make with your Boost for added nutrition. I've only been able to gain a few pounds back. I went for 180 to 128. This morning I was 132. Also, even though I'm tired I make myself get out and enjoy nature and do my walks with my pups. I also lift some light weights and do my daily neck massages.

@colleenyoung I wish my team, anyone that is, would have Clearly and Completely explained the truth about how much damage radiation can cause to head and neck because if I had known then what I would be going through now I would have made some different decisions. I likely would’ve had more dental work taken care of even go through getting teeth pulled out and implants put in. Now I am extremely limited in my choices and risk of infection is extremely high. I might’ve given more consideration to not having the radical neck disectomy because of the damage it did the numbness from cutting nerves that likely will Never heal. My surgeon told me there was a chance that nerves could get cut but that he’s going to do his best to be careful… making it sound as though he would be able to perform the surgery without the resulting damage. I am grateful to be alive and up until about a week ago I thought I was still cancer free. My surgeon sent me for CT with contrast one week ago for a hard lump where my jaw meets my neck. The scan was severely degraded due to prior dental work and I’m still waiting on a response And praying it’s not cancer related. I’m about 2.5 years out from the end of radiation and still haven’t been able to gain weight back even with the high calorie boost mixed with vitD milk twice daily and regular meals. My appetite is still very low and I’m still tired too much of the time. I’m wondering why. I thought chemo caused more problems than radiation and was glad I was told that I didn’t need chemotherapy and that radiation would take care of my needs. I just wish More Emphasis was actually placed on defining what radiation and chemotherapy could do versus radiation or chemotherapy alone. I don’t mean to sound ungrateful because I’m definitely grateful to be alive. I just wish that the medical professionals would have been completely direct, transparent, and even blunt about everything. Especially when I told everyone to not hold back and to just be completely honest and direct.
This all feels like too much especially when now I’m really kind of fearing the worst again.

@jcb25 I had difficulty with a metallic taste in food when eating and found that switching my silverware to using wooden/bamboo or plastic (IKEA children’s cutlery) helped.

if it helps try to eat as healthy as you can. I can't eat much 16 month post CRT. I lost 50 pounds and mostly survived on Boost high calorie for awhile. Try High protein oatmeal. Make it a little juicy and it goes down smooth. Always add blueberries, bananas or some fruit. In the beginning I found Liptons chicken noodle soup in the pouch was good. I ate so much of it i can't stand it now. Mostly anything you can add a little sauce or gravy to makes it easier to chew and enjoy. Smoothies are good. Add protein powder. You can even make with your Boost for added nutrition. I've only been able to gain a few pounds back. I went for 180 to 128. This morning I was 132. Also, even though I'm tired I make myself get out and enjoy nature and do my walks with my pups. I also lift some light weights and do my daily neck massages.