head and neck radiation for oral cancer - how to eat when food is blah (no taste)

[debstar]

thank you all so much for your invaluable information and support, as you all know this is a very scary time for both of us, and Terry has had 2 of 30 treatments so far, i have started taking photographs each day to monitor the site, as the site is quite extensive reaching from the top of his left ear right down to under his chin and across almost to his nose. the marks on the mask are quite terrifying when you see them, but we both know its a means to an end and we are hopeful that we will have a positive outcome after this is over.( after all we do have a wedding to plan 🐵 ) so the information we have from all of you has been very helpful to both of us.. thank you again and we will be trying to keep in touch and offer our experiences here on the forum for others who may be going through this as well... our very best wishes to all of you going through this struggle and to all of the wonderful family and friends and carers who help us through, love and strength to you all; deb and terry

[SILLY]

Hi Deb,I think Terry will get used to the mask. The radiation became a routine for me and a reason to go out each day . How is he ? Is the radiation IMRT ? I would think it is. They have one machine for that last year at the PA hospital. If you come across a nurse called Alex,say hello from me . I don't care if she can't remember me but I remember her . She was especially nice to me .Also there was a male nurse who told me ,when no doctor did, about medication for nerve pain . I will be forever grateful to him as well.(By the way my name is Sylvia.) All the best for now.

[unclet]

Hi my name is Tony i finished treatment on August 23rd this year, i have lost my taste buds and saliva. I find it hard to swallow food, what i really want to know is that how long before your taste buds and saliva come back.

[CJF]

Hi Tony, The return of saliva and taste buds depends on your treatment. I had part of my tongue removed and some of my salivary glands were affected by this surgery so they will never return to normal. During radiation the remaining taste buds were affected but I think they returned after 3 - 4 months. I ate strong tasting foods which seemed to help make it a little more interesting. I saw a speech pathologist who taught me to swallow while I was in hospital but I still have trouble with soft or gluggy foods. I found that drinking water whilst eating made it easier - in fact I always have either water or a 'dry mouth' spray with me. There are also dry mouth chewing gums on the market if you can chew gum. 4 1/2 years on I don't really notice the difficulties with my mouth. I've become used to them and the little things I just automatically do now to make it easier. I hope this helps - and I hope you improve quickly. Cheers CJF

[unclet]

Hi CJF, thank you for letting me know. I do hope that they come back, the treatment i had was on my neck had a lump.

[VM1951]

I also had a large part of my togue removed replaced with a skinflap from my left arm. I had a 6 week course of radiation. After the second week I was back in hospital due to weight loss. Swallowing was very difficult for me due to sore throat. I made sure that there was always plenty of cream on my neck, and they would wrap you in glad wrap to keep it there. I always had food that was well cooked, usually steamed. It all tastes the same for a long while. Putting lots of Gravey on meals helps. The gluggy saliva will eventually pass.I had to avoid spicey foods as they would also burn my throat. Care must also be taken with the temperature as well, not too hot. It is 11 years now since my surgery.

[unclet]

Has anyone had treatment on the neck and got back both the taste buds and saliva back. I did 6 weeks of chemo and 42 treatment of radiation, it has been 2 months now and i still have no saliva or taste

[Jules2]

Hiya unclet, Welcome and apologies for the late reply ... working incredibly long hours these days and not always having internet. :) I still suffer from not much saliva and my taste buds are back most of the time. THere are still some things that I cannot taste or the taste has changed for me. Most fruit these days is just sour, hence I don't bother much with it other than peaches and bananas. Feels like forever when you first finish treatment. I hope you start to notice some small differences in your saliva and taste issues and soon. I used to experiment with things like vegemite and of course the experiments depends on what your mouth can tolerate. I still don't do chili or anything too spicy and hot these days and I am heading for two years since completing treatment. All my best Julie

[Rodney]

Hi I have 2 rounds of radiation therapy , I finished the last round in december my taste buds took a couple of months to return , I still have a very dry throat in the night so I always make sure I have water by the bed I am able to eat anything .. I still do the mouth washes etc and use a Manuka honey spray when my throat gets dry. Hope everything comes back for you seems by reading it's an individual thing ........ Take care

[debstar]

Hi Sylvia, thank you for your reply, we are on to day 11 of treatment, and so far so good.. Terry has fared remarkably well so far, with no pain, except the occasional headache which thankfully panadol will ease. He is however having a bit of a rough time with his throat feeling very tight and that closing in feeling.. They keep telling us to make the most of it and that it will get worse, but for now we are thanking our lucky stars that he is still so well.. Eating is going well as is his weight only fluctuating by a kilo or so either way, depending on what he has eaten for the day, I have been in my element cooking up a protien based storm for him, last night was an omelette with chicken, ham and cheese, that went down well apparently, Terry has said that his tastebuds have changed though and every thing has to have sauce or lots of salt and pepper on it for him to enjoy it.. so if thats what it takes thats what we do.. Tonight he felt like mince so i have made a nice kind of pie filling mix with gravy and he is having that with mash potato with lots of milk and butter.. just the way he loves it.. and its guilt free for now 🙂 He has tried the drinks the hospitals have given him with out much luck, he didn't like the taste or the texture but im sure when he needs them (when he has no taste buds) im sure they will be ok We have been very impressed with all help and support the hospital have given us. They truly are a special group of people.. thanks for the support as well Sylvia, its very much appreciated by both terry and myself. take care and stay well.. Debstar