Dysphagia - Late effect of Head and Neck Cancer

Dave Thanks for your reply it is incredibly useful. I'm replying to an earlier one as your reply has vanished from the site at the moment. Most odd. I'm sure the info re the mic-key will be most useful. Hope you enjoyed Indonesia. One of my favourite parts of the world. Thanks again, really appreciated.

Jonh

Hi Jon,

Don’t know why it disappeared but here it is again

Sorry to hear that things are not going that well.

Just thought I should update on my previous posts of some years ago and hopefully give you a bit of encouragement for the future.

Firstly, I did manage to convince my consultant to put me on a course of vitamin E and pentoxifylline but I don’t think it did any good. Additionally, I purchased an Iqoro device and used that for a year with little success.

About a year ago, like you, I had a bout of aspiration pneumonia, followed by a video fluoroscopy swallow test and was advised I should go onto a PEG.

My initial reaction was ‘no way am I doing that’ and consequently I soldiered on with my Level 4 diet. Two months later I was back in hospital again with aspiration pneumonia and at that point, much against my better instincts, I had to give in to the SALT diagnosis.

I have now been using a PEG of some kind for around nine months – Initially, a tube through my nose and a pumped feed system, followed by a dangler G-PEG and bolus feeding and now a mic-key button. - It was really difficult initially to mentally adjust to the reality of all this but over time I have come to realise that it was the best move.

I have now had the mic-key for around two months and it is 10 times better than the G-PEG dangler and I would highly recommend you go that way if possible – It is very small and gives you real freedom in terms of general day to day living. – You need to start off with a Ballon PEG that is inserted in the radiography unit (not a bumper PEG) and then after about three months it can be changed to a mic-key button by the home visitor nurse.

Since having the mic-key button fitted I have resumed my travelling and have just returned from spending a month travelling independently around Indonesia – Transporting 35kg of Fresubin feed bottles was a bit of challenge and meant I had to modify my approach to traveling somewhat but otherwise it all went without a hitch.

I’m sure, like I did, you feel at the moment that your world has just collapsed. Don’t give up though - As you say, it is just a second new-normal that you have to get your head around.

The positives of it all are that, in the future, you don’t need to spend time shopping for food or cooking. Also, all the feed is provided for free by the NHS so it will save you a fortune. As an added bonus, I have also lost around 4 stone in weight over the last two years, during my time on Level 4 food and the PEG, so I am now at a stable 14.5 stone.

Just as an aside, I am under the Royal Surrey hospital as well so if you insist, they should be able to provide you with a mic-key button.

If you want to ask anything don’t hesitate to get in touch

Dave

Dave2017 said:

Since having the mic-key button fitted I have resumed my travelling

Dave. Thanks for that. I’ve never heard of that so I looked it up on Google.It certainly looks much nicer than the standard PEG/RIG.  Do you have to have it changed often? 

Hi Dani,

The button itself is changed about every three months. It only takes about 15 minutes though and is done at home by one of the Nutricia community nurses. I think you can even do it yourself. It’s just a question of deflating the balloon by removing the water , pulling the button out and pushing the new one in.

There is also an extension tube that you need to attach to the button every time you feed. This needs to be flushed and cleaned before and after each feed and a new extension tube is used every two weeks.

initially I was a bit concerned that having to place and flush/clean the extension tube before and after each feed would be big issue but to be honest it only takes a minute or so each time and once you get used to it you do not even think about it. 

The button gets rid of the hassle of having to tape up the dangler, etc and this in itself far outweighs the issues associated with using the extension tube.

Hope this helps

Dave

Good afternoon John, sorry you are struggling with your swallow, as Dani mentioned I have been PEG dependant since 2010 . Having a PEGis not to bad as long as you can accept not eating anymore, its a bit difficult to begin with but once you get into a routine its okay and you will find it a big asset and will take away the worry of swallowing allowing you to maintain a stable weight. You will have to have the PEG changed about every 6 months by a nurse. I have 6 Ensures a day and do by syringe but you can have it pump fed. The good thing is it can always be removed if you are unhappy with it. I wish you all the best, take care.                                              Chris.

Thank you Chris. I'm so pleased you are still here, I was wondering if you would be when I logged back on :)

Hi Dave,

really impressed and totally inspired by your travels with a feeding tube! It was uplifting to read. My own history (in my profile, if you're interested) is fairly similar to yours in many ways. I've just been diagnosed with dysphagia and it may well be that I will be following your route (the feeding tube route I mean!) before too long. Which is why I found your post so inspiring (thanks).

If you don't mind, as your post is over a year old, I'd be really interested to know how you are getting on now as it would, obviously, be very helpful in taking a decision that I may well have to make soonish.

All best wishes,

David

Hi David,

Sounds like you are doing much better than me. The late effects of radiation treatment are the gift that keeps on giving - fortunately however they do not not affect everyone in the same way and I think I have been particularly unlucky.

Basically, I was put on a PEG to reduce the risks of aspiration and that worked fine. I did that for about two years in all and once I got the hang of it all was OK - a bit of a bind but you just get used to it.

Unfortunately, our good friend ‘radiation’ decided to pass another gift onto me in the form of reducing the ability of voice box to function properly meaning that the airway gradually narrowed and I had increasing problems breathing - I was informed then that the only solution was a laryngectomy. - Again, as with the PEG I was very anti the idea and held out as long as I could before eventually caving in and agreeing to have a laryngectomy operation.

In truth though, having the laryngectomy has been a good thing, rather than another move backwards. Basically it is about separating the food pipe from the air pipe. Once it’s done all worries about aspiration disappear so I don’t need a PEG anymore and can eat most things - In fact I think I can now eat better than I have at any time since I had my cancer treatment. Still can’t manage steak though, unless it is a melt in the mouth Waga steak.

Its also resolved my breathing issues, so no more worries about chest infections and getting pneumonia. The only down side is that they have to take your voice box out as part of the laryngectomy operation so speaking is more difficult. I have a voice valve though so I can still speak OK, but it is a bit of a flaff.

I had this new operation in August 2024 and it took a bit o f time to recover so I have not been travelling again yet but hope to go to the States for a few weeks in April / May, just travelling around on AMTRAK trains. I will not need to carry 35kg of food with me this time either.

Looking at your profile it seems that you have not been affected by radiation to anywhere the same extent as I have so hopefully you will not follow my path. In any case, what I have learnt is that there is no point in resisting in the end, You just have to go with the flow, get on with it and keep positive.

To be honest I didn’t think I would actually be able get around in Indonesia with 35kg of food to carry  but I did it. You just have to stay positive and not to give up.

I hope if you do have to have a PEG all goes well. I think it much more frightening to think about it than it actually turns out to be.

Hi Dave,

Many thanks for responding so quickly and for explaining so fully and clearly what has happened since your previous post. And for your positive words too. I'm really sorry that you had to go through another procedure. It's bl..dy tough this business, but I'm glad that you are able to eat so well again and that you don't have to worry about the pneumonia issue (because that's a big one).

Yeah, the gift that keeps on giving ... late effects of radiation. The treatment we had was really brutal and has its effects. It sounds like you have been particularly unlucky as you say, though dysphagia, I have just learned, is not uncommon after radio to the neck.

In my case, the late effects got me in a different way 6 years after treatment when I was diagnosed with Non-Hodgkins Lymphoma. I was living in Berlin at the time and was treated there. The hospital concluded - obviously it can't be definitively proved - that this was "very probably" caused by the radio- and  chemotherapy in 2015. 

But that's another story. Thanks again for responding Dave, it shows me that it's possible to carry on and do good stuff despite everything. I am someone who enjoys train travel very much, so your planned AMTRAK adventure sounds excellent to me.

All best wishes,

David