Does anyone know why radiotherapy kills appetite for so long?

RadioactiveRaz said:

Hi Peter please let your team know about any niggles. They always said to me would sooner know at the start of  them have to face something later down the line. .

Thankfully that was always the case with me. Since Covid so much seems to have gone downhill. I despair sometimes at the lack of support, usually after wrap around care stops at treatment end but sometimes even during treatment. 
Hazel and I sometimes joke about how we could help our teams if we won Euromillions. Linac and  Da Vinci suites? 
My money would be on funding a proper Late Effects unit. 

Hi Dani. Yes a late efffcts unit is a fab idea, wrap around care I fear is a thing if the past. We were lucky if that’s the right word so much has changed since our treatment. But all of us on here continue to help where we can. Now must get a euro millions ticket for tomorrow you never know a late effects unit could be coming your way soon.

Hazel xx 

He probably has a lack of appetite due to the change of taste buds, things that weren't spicy before are spicy and sometimes your favorite food doesn't have the same flavor so it just makes it depressing to eat.  Plus it's a lot of work just to eat.  I completed my treatment in 2008 and I can't eat if I don't have water nearby to drink to assist in swallowing.  Start with soft bland foods - my go to was mashed potatoes and ice cream then as he builds confidence in adjusting to his new way of eating, he will eventually eat more

The dry mouth/throat is an unfortunate lifetime side effect but that's not the only cause of difficulty swallowing - the radiation eventually causes fibrosis/scar tissue/and stricture of the esophagus over time so he may have to get an endoscopy every few years to dilate his esophagus

FLgirlhybridtongue said:

The dry mouth/throat is an unfortunate lifetime side effect but that's not the only cause of difficulty swallowing - the radiation eventually causes fibrosis/scar tissue/and stricture of the esophagus over time so he may have to get an endoscopy every few years to dilate his esophagus

Most people make a better recovery than that, thankfully. Radiotherapy has come on in leaps and bounds in the last 10/15 years, is more finely targeted and produces fewer long term side effects. Nevertheless your warning is a good reason to keep the jaw and swallow exercises going for life. 

Hi I am one year from chemo and radiation to head and neck. Went from 175lbs to 135 but am back to 170. Like all of us I have had quite the journey with food but I have to say that very recently the tastes have started coming back like crazy and it’s actually pretty emotional to taste things and to think “that’s the way it used to taste!”  So everyone’s timeline is different but for me the one year mark seems to be kind of the magic moment. I will never be 100% of what I was but I feel close to 90 which is fine. Also I am sure we all know or have heard that Boost and Ensure are incredibly helpful ways to get calories when it’s tough to eat and if you can find it, papaya juice was really helpful to sooth my throat when things were really tough. I was fortunate to get my treatment in NYC where they actually have places that sell fresh papaya juice. I hope others elsewhere will be able to find it or make it themselves. 

My husband also lost 3 stone, and has put 2 back on.  His taste came back after about 5 months (we have been having acupuncture through a cancer charity, so that might've helped.)  he still has no appetite though.

luckily he's never had sore throat issues, or ulcers.  BUT his cancer has spread to his lungs so he is still having treatment unfortunately.

Thank you for your reply.

RadioactiveRaz said:

Now at 5 yesds I’ve finally had my first tangerines.

I can't tell you how happy I am to read this.  I am back to eating most things now, even some spicy foods but fruit remains the hold out. Still tastes terrible. I miss tangerines in particular but will keep trying. It's good to know that it's possible to have them again, even if it takes 5 years... 

Agree on the fruit issue. For what it is worth, avocados have been my go to as well. Not the kind of fruit people are wanting to taste again but they are wonderful things morning, midday and night and can be paired with so many things and add lubrication to anything esp if you add some oil, vinegar, hot sauce etc to it, beat it up and have at it. I have eaten more avos in the past two years than in most peoples lifetimes! I also agree that there is not nearly enough of this type of info sharing around this after-treatment life we all have. This is a great forum. Saw a few similar conversations on TwitterX. It’s helpful. 

Hi Liesle

Same as you 5 years after my last radiotherapy and although things taste much better they are still not quite right. I have had radiotherapy twice once before in 2013 and my taste returned nearly to normal then but I think after the second dose it is taking longer.  I have found that the aroma of the food is still great though and I often smell it and it reminds me of what the taste should be like even though the taste isn't quite there. The discussion about tangerines took me right back to the smell of one. Lovely. I find sweet food tastes very flat still. I used to love marmalade but the taste isn't right anymore. Having said that I must give it another try as sometimes I am surprised still.

Lyn

Hi 

5 years and still no full taste must be awfu! 

I just read this and was recently under the impression that radiotherapy wouldn’t be given more than once?