Dysphagia - Late effect of Head and Neck Cancer

Hi Dave Hi from me I’m Hazel 3.5 years post radiotherapy for tonsil cancer. I can’t really answer your question just wanted to say hello. I was diagnosed with a small amount of radiation fibrosis last year.Radiation sude at back if neck that tendon.  The only effect I have at the minute us s silly as thus sounds if I chop vegetables especially onions. I was given advise over the phone due to covid  restrictions from hospital physiotherapy team ti stop what I was doing  when I felt it and was given a few exercises to doThe exercises are just gentle stretching ones and one where I have to put a shock horror type if face ! I kid you not  but it seems to work for me  

Touch wood they are working. I have just done a 65 km bike ride. I am fine with eating sorry ti hear about you’re progression. Well done on your travels so far and long May they continue. 
Hazel x

Hi Dave. Sorry you are having problems so long after your treatment.

I can't answer personally about the drug treatment but I do know that PENTO and PENTOCLO (pentoxyiphylline and Vet E plus clodronate) are used successfully for Osteoradionecrosis which is essentially a type of fibrosis caused by radiotherapy, so maybe there is some rationale behind what you've found for your fibrosis.

Now the IQORO I can comment about. I have had recurrent flares of severe reflux causing significant chest pain. I came across this gizmo researching coming off PPIs which can be dangerous long term (more cancer) I now use this three times daily as per instructions together with aloe vera juice and melatonin. I am hugely better after only six weeks. Who knows whether it's the IQORO or either of the others or all of them but I can now eat all the trigger foods that  caused me pain. To my mind I'd be trying the drugs and the device.

Best wishes

Good evening Dave, i don't know about the drugs or your condition but I don't think having a feeding tube fitted permanently will do any harm as i have had one since 2010 and live an active life. Its great you are looking into other ways of getting around this problem, i hope you manage to achieve your aim, all the best.

                                                                 Chris 

Hi Dave

Sorry to hear about your predicament with the radiotherapy induced fibrosis. That’s a blow after all these years.

It sounds as though Dani’s experience with the IQORO has been positive so that certainly sounds as if it is a goer.

However if the worst comes to the worst living on a pureed diet is quite manageable. I have had to live on one since 2019 after my first maxillectomy (I had previously had a mandibulectomy so my teeth were very limited) and after a period of adjustment came to terms with it and managed holidays with not too many issues. You just have to get your head around it and work out management strategies especially when you are going out for dinner with others or going away.

I wasn’t going to stop going to family functions or generally socializing just because I could not eat what was on the menu.

When I go on holidays I go well prepared. I take my own portable hot plate if I can’t get accommodation that is self catering. I also take my nutribullet food processor so I can puree whatever I need to.

I do take my own food with me when I go to restaurants and up to this point have never been challenged by staff about it. Nobody seems to notice.

You get to know what you can eat when out and it is usually quite limited. If in doubt when I go out I take my bottle of supplement which is similar to Fortisip to keep my calories up. I have even taken my pureed soup in a vacuum flask and drunk it in the restaurant. I take a white mug with me and pour the soup into it.  I order a drink so that keeps everyone happy.

I still find tasty food although a lot is off limits now. I would love bacon and eggs and a crumpet but that is no longer possible.

It does take a little while to come to terms with the change in eating. Experimenting with different pureed foods is the way to go and you eventually find a menu that works for you that can still be very tasty.

I hope you find what works for you whether it be with the exercises or modifying your diet. It doesn’t have to hold you back.

Lyn

Hi Hazel

Thanks  for your reply 

Glad to hear you have made a good recovery

Keep up the exercises so you can carry on chopping those onions

Dave

Hi Dani

Thanks for your message

Your comments about both the drugs combo being used for Osteoradionecrosis and your experiences with Iqoro are really useful.

I think I might buy a IQoro device anyway and speak to my GP about whether there is any merit in trying the drug combination 

My only concern with IQoro is that it seems really expensive for what it is which makes me wonder if it is a scam. However NICE seems to have approved it for use from 1 May 2022 for stroke patients so presumably they have done some due diligence on its authenticity 

Thanks again

Dave

Hi Chris

Thanks for your reply 

Really glad to hear you are ok - I think you were one of those that helped me get through the first year and reach my new normal 

Also thanks for the reassurances about life with a PEG - I’m sure I will manage if that is the reality of the situation but I just want to explore all options 

Regards 

Dave

Hi Sophie

Thanks for your comments 

To be honest, the Level 4 puréed diet is not really a problem most of the time - Generally, I just purchase pre-prepared meals from Oakhouse so in many ways it is less hassle than cooking and then trying to swallow “normal” food.

I have however now bought a Vitamix and am experimenting with preparing some meals from scratch - only at the puréed porridge and cottage pie stage at the moment though.

The main challenge is going to be going away for a few days and trying to stay in a hotel with no freezer, microwave or other cooking facilities - Maybe I will just try living off thickened Scanishake for a few days.

keep well

Dave

Dave2017 said:

speak to my GP about whether there is any merit in trying the drug combination 

Go back to your hospital. This is specialist stuff. I doubt your GP would know much about it. Good luck. Do keep us in the loop 

Hi Dave

Glad to hear that you are already managing with the pureed food as it does bring its challenges.

In relation to going to a hotel without cooking facilities, microwave etc. This is when I take my small portable hotplate. I then buy food just before I go back to the hotel, puree it with my nutribullet and heat it up on the hotplate. I usually buy a ready made meal that is not frozen and add milk to it.  You just have to take a saucepan with you. I take a small bag with any other essentials e.g. salt and pepper, plate, spoon. I wash up the dishes in the bathroom sink.

I just have to be prepared and take a bit extra with me. It is great if you are driving as carrying it in the car presents no problems. I also have in the car a small portable fridge that holds perishable essentials and plugs into the cigarette lighter. I can keep things cold when driving then.

I have found it is easier to adapt the sort of holiday I take so have not yet taken on the challenge of taking a holiday that does not involve driving my own car.

You have such a positive attitude that I am sure you will find a solution to any challenges you face.

Best wishes

Lyn