Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Dry mouth syndrome

Toby18
Posted by

Is there a fellow nasopharyngeal fighter on here who could help me          it's now 2 years since my treatment ended I was wondering did you ever get your saliva back ? I haven't as yet and still can't chew and swallow I am now eating Wiltshire farms purée meals find them a lot easier then blending everything together no lumps in them go down well with water   

daloni
Posted by

Hi

That sounds incredibly uncomfortable and joyless. Food is so important so not to be able to eat normally must be difficult. 

I can’t help as I have no experience of this but I know someone who might know more. Try the head and neck cancer group. The folks over there will have much more experience than me. Here’s a link: 

https://community.macmillan.org.uk/cancer_types/head-neck-cancer/

I am going to tag my fellow champ so he can look out for you 

All the best 

chris2012
Posted by

Hello Toby18, you are in the wrong group but I'm from the Head and Neck group so I might be able to offer advice if I cannot then I'm sure there are others who can. In most head and neck cases lack of saliva is a big problem as they sometimes remove saliva glands, it depends how many and how big they are upon removal. If you have not seen an improvement in these two years then i don't think they are going to improve, maybe a little bit. I had saliva glands removed but still get a fair bit of saliva during the day but at night when I'm asleep its very dry. During the day I'm constantly drinking to stop my mouth drying out which helps a lot. I'm pleased you are eating Wiltshire farm foods as that is a good position to be in, maybe in time, your swallowing will improve along with your saliva glands. If you did not have surgery just radiotherapy /chemo then as you would know it can damage saliva glands, sometimes they recover, even after two years so maybe things will improve for you. You can post in the Head and Neck group as im sure there might be people there that have had this sort of cancer.I hope this has helped in some way, best wishes, take care. 

                                                           Chris

Its sometimes not easy but its worth it !                Click here to find out more

Ron51
Posted by

I get the impression that you are trying to eat foods you could before your treatments, I have found there are foods I can't get down such as potato, I can just manage roast if they are not to big with plenty of gravy, bread I have to lightly toast, brown bread is a no no even toasted, though some white bread I can eat if not to gloopy (they are usually more expensive ones), the other main thing is beans I think the general term is pulses, also cheese is a problem but is ok melted, the things that go down well is pasta and I can eat freshly cooked meat (as long as its not overcooked) the leftovers tend to dry out so are a problem, sausages and mince I can manage the mince has to be cut smaller or it tends to stick in my throat and always the high fat ones.This is my problems and not necessarily going to be the same with you but you need to try different foods and see what goes down easier (none of it goes down easy) I find that a little spice helps as it gets the saliva glands I have left at the front of my mouth working overtime, saying that lots of us can't do spices. The other thing that can help is to go to meetings with other people that have had the same as us as they can come up with ideas to help, I go to http://www.heads2gether.net/ if you have one in your area.

Dave2017
Posted by

Hi Toby,

I am now now over three years on from radiotherapy  / chemo and have some saliva back and can now eat a lot of solid food, albeit siowly with much chewing

At two years I was very much like you, puréed Wiltshire foods, yogurts, cheesecakes, etc., so it can get better.

I still carry a bottle of water everywhere but it does rule my life any more.

At some point, I can’t really remember when, it all just became an inconvenience, rather than continuous drain.

Just keep on in there.

What I found did help with the swallowing was to do neck exercises, up and down, side to side and head lifting exercises

As they say, very little by very little, it can get better

Dave

Dave - keep smiling and take one step at a time

Toby18
Posted by

Thanks Dave for your reply I do all the exercises always got water with me and a pocket full tissue as I'm still getting a lot of mucus I can't eat vast amounts as swallowing difficult still taking supplements which obviously help not been able to sustain my weight without them biggest problem is I had the majority of my teeth taken out so chewing is difficult but hopefully now with the purée meals I  can get used to them and gradually come of the supplements my diet mainly porridge soup and yoghurt also custard at the moment I'll get there eventually          Toby

Toby18
Posted by

Hi Dave I hope you don't mind me asking questions but as your a bit further on then me in recovery your experience would be helpful to me are you still taking supplements to help maintain your weight ? How did you get on with the purée meals I find the puddings a lot easier to swallow at the moment I still find tea and coffee hard to drink as they make my mouth feel sticky so always sipping water and do you still have a problem with mucas thanks Toby

Dave2017
Posted by

Hi Toby

I had radiation / chemo in August 2016 and a selective next dissection in January 2017 to get rid of cancerous lumps in my neck. I suppose I was lucky in that they never found the primary cause of the lymph node cancer in my neck and therefore apart from having my tonsils out they did not do any other surgery inside my mouth. They did however have to radiate everywhere around my neck and throat to make sure they got at the primary cause, whatever it was.


I was basically on tube feed food for the first nine months after radiation / chemo and then slowly graduated onto yogurts, soups, etc.

After about 15 months I was able to start very very soft things like  cheese cake and custard and probably started on Wiltshire puréed at about 18 months

Some time, probably around 18 months I also started eating Weekabix, with loads of milk and leaving it to soften up for about 30 minutes - Even now, I still find it difficult to eat Weekabix without letting it soak in the milk

I eventually started eating the ‘Soft’ Wiltshire food ( D I think) after about 27 months but it was very difficult at first. Choking most of the time but just kept trying and slowly but slowly it got better

Even now, after around 40 months, I are still limited in many ways in what I eat. I tend to eat Sainsbury’s ready meals most of the time, but I can eat bread now and I can even eat things like shop made sausage rolls and pork pies if I eat them with loads and loads of water and chew them down into a mush.

I think I have probably reached a point now where I won’t get that much better. I have however just accepted that and compared with where I was two years ago its all ok anyway.

on the supplements issue I gradually stopped then at around two years. I deliberately sought out high calorie foods instead like yogurts, cheesecakes, soft cheeses, creamy custards, etc in place of the supplements. No sure what it has done to my cholesterol levels but we can’t worry about everything. Even now I still eat a lot of yogurt, cheese, full fat milk, etc but my weight has stabilised. Overall, I think I lost about three stone from 19 stone to 16 stone over about 24 months  but that was a good outcome.

In terms of mucus I still cough up mucus from time to time but in some ways that’s good as it acts as a replacement for the lack of saliva. My consultant also tells me that even now my throat is still slightly swollen on the inside from the radiation treatment - Again though, I see that as a good thing because it might mean there is still room for improvement if the swelling ever reduces.

I went for a long, long time being unable to tolerate anything with a strong taste - pepper, coffee, wine, beer, etc but that also has gradually got better. I started by drinking wine cut 50 / 50 with water and that seemed to work. Again, though, although not perfect those issues are now mainly a thing of the past. I can even tolerate a mild curry now.

The main time I do struggle is when I am away from home. I still work from time to time and have to travel to the Middle East for week or so at a time. I have also been on three one month long holidays to Russia, China and Tibet and its gets very difficult to find things that I can eat every day - On those occasions I still carry Skandishake with me   as an emergency back-up.

i suppose we are all different and the extent to which we each recover will vary from one person to another. All I would say is don’t give up. I never thought I would get to where I am now. What I did do though was to never accept that my old life was over. I just looked at it as being a sh@@ year or two that I had to get through and things would eventually get better.

Now I suppose I have just adjusted to the new norm, accept that there are some limits on how I can live, and get on with it.

Hope this helps 

Dave

Dave - keep smiling and take one step at a time