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.

Not able to eat drink or swallow

ajj1231
Posted by

IM NEW O THIS GROUP..YESTERDAY WAS MY 1 YEAR ANNIVERSARY FOR THE TREATMENTS WITH THROAT CANCER...AS OF TODAY I AM CANCER FREE HOWEVER, I AM DEALING WITH THE AFTERMATH OF TADIATIONAND CHEMO..MY THROAT AREA AND ESOPHAGUS  WAS TOTALLY DAMAGED THEREFORE CAUSING ME NOT TO BE ABLE TO EAT DRINK OR SWALLOW..I HAVE NOT GIVEN UP BUT I THINK MY TEAM OF DOCTORS ARE..I HAVE HAD SEVERAL PROCEDURES THAT JUST DIDNT WORK..THEY COULDN'T  GET THROUGH THE SCAR TISSUES SAFELY..I AM HOPING SOMEONE IN THIS GROUP COULD REFER ME OR OFFER ME HELP IN WAYS OF TRYING TO FIX THIS ISSUE..I AM ON A FEEDING TUBE AND CONSISTENTLY  LOOSING WEIGHT....JUST WANT TO BE ABLE TO NURISH MY  BODY AGAIN ...A WHOLE YEAR OF NO EATING DRINKING OR SWALLOWING... SO IF YOU KNOW OF ANY QUALIFIED  DOCTORS PLEASE FEEL FREE TO LET ME KNOW..LOCATION IS NOT AN ISSUE ILL TRAVEL NEAR AND FAR TO GET THIS FIXED....IM IN THE ATLANTA GA AREA...THANKS GUYS HOPE EACH OF YOU ARE HAVING A BLESSED DAY...

Alichapp
Posted by

Hi ajj1231, really sorry to hear of your situation, there are people regularly on this forum who have to cope with feeding via a tube, RIG or PEG due to the aftereffects of Head and Neck cancers.

I just wanted to ask, though, do you realise that this forum and the Macmillan cancer charity which supports it are based in the United Kingdom? It looks like you are in the USA. So any medical recommendations people from here can make will be very difficult to access, especially as we all get treatment from our National Health Service, which I don't think you would be eligible for.

But it ought to be possible to maintain your nutrition via tube feeding and I think there will be people who can help with those aspects.

All the very best to you

Clive_r
Posted by

Hi Jj1231, I can totally sympathise with your situation. My oesophagus was also damaged to the point that I could not eat or drink. I was like that for a year until my own consultant discussed my case with another at a hospital 60 miles away. He was able to make an opening by attacking it from both ends, down through my mouth and up through my PEG hole in my stomach. He also made a couple more incisions in my stomach. Since then I have at least been able to drink but still cannot eat and never will. That was two and a half years ago now. There must be someone on the US who is able to at least look at doing a similar procedure so don't give up, keep searching and keep asking the questions. Good luck.

Clive

ajj1231
Posted by

Hi Alichapp thanks for responding...and no i didnt realize  this was in the UK... however, i do appreciate the forum to see what other people  have experienced...it just seems like we fight so hard to get rid of this Cancer and that's a blessing however,  the aftermath of treatments seem to be more damaging..and that sucks.. im on a peg tube now, but i am limited to my intake because my stomach has shrunk..smh..so it makes it more difficult..but hey one day we will all get through this...and be whole again..

ajj1231
Posted by

Hi Clive, i have had several procedures done and the last one was the exact on you described..the issue is that the scar tissues will not allow the doctors to get pass...now they have 2 alternative surgeries that are a no-go in my book as of know..one which has a low survival rate (80%chance i wont make it through the surgery) and the second one is to remove my voice box permanently...and right now that a rough decision  for me to make..its just odd to know that i cant find any other successful cases..but i will continue to look..i sympathize  with you Clive ..so what were the other incisions in your stomach for?  How do you cope without being able to eat solid foods? Is there anymore procedures that you can have? Whays preventing you from actually eating solids??.. sorry to bombard you with so many questions..this is just diffucult for me to understand..i wish you many blessings and pure healing Clive..

Clive_r
Posted by

Hi Ajj1231, no problem with the questions, happy to help if I can. Like you I had several procedures which we call balloon dilatations. The last one of those was from both ends which didn't work. From the X-ray they could see that I had a half inch stricture that they just could not pass. That is why I had the surgical procedure to cut through the scar tissue to make a hole. I'm afraid I have no idea why the surgeon made the three extra incisions. I was never offered any alternatives but like you I can speak and the thought of losing the ability to converse would be an absolute no for me.

coping without food is the hardest thing I have done in my life. I am ex forces, helicopter aircrew and have seen active service. I would gladly take all of those risks again rather than end up like I am. I have not eaten for nearly four years now and I still find it hard to cope. Unfortunately there are no more procedures that I can have as the muscle area around the stricture is effectively dead. I tried to eat for over a year but I constantly choked, eventually my wife stopped me as she could not bear to see me struggling so much. I can cope with light fluids as gravity just takes it down but it is still difficult. I hope you can find someone who can help even to allow you to drink as it at least allows me to have a social cup of coffee.

once again, good luck with your search.

Clive

jane 13
Posted by

Hi Clive,

i'm new on here and just reading yous and Ajj1231 messages i,m in the same position i have not eaten or drank anything  for 2 and half years at first i thought i would be eating within a couple of months i had 2 dilation and was told the scar tissue had shut off my throat but i live in hope you never know

I have learnt to live with it and gone back to work only part time now ,i still have my speech they offered me tractotomy and remove my voice box  i said no thank you i just could not get my head round it .

i do have my days where i just cant believe whats happened because i would be happy if i could just drink and have a social cup of coffee as i said i live in hope you never know.

my cancer was advanced stage 4 in my  hypopharynx apparently it does not show up until later stages i had been to my doctors 5 times to be told my sore throat and earache was a virus various other symptoms as well the 5th doctor finally took my symptoms seriously and then it was full on , dentist,peg fitted chemo and radio very ill to begin with now i,m doing ok.

good luck toyou all my motto live in hope 

Jane13

,

jane 13
ajj1231
Posted by

Blessings to you..this is something to deal with..i am keeping my faith and being very hopeful that one day a turn around  will come...we are blessed to be still alive but you never realize how someting so small as eating would be in your life until you cant...i wish us ALL blessings and a cure from all we have endured.... thanks  for sharing.  Hope you continue to push forward and dont give up...

Clive_r
Posted by

Hi Jane 13, I am sorry that you are one of the few of us that cannot eat or drink. I was only in that situation for a year before they managed to open my oesophagus to allow fluid to pass but I still cannot eat. Like you it took the doctors a long time to refer me to ENT and by the time they did I needed the max dose of radiation they could give me which is why my oesophagus ended up so scarred. I was lucky that my consultant knew of a surgeon that would have a go at opening it up but I had to move hospitals and county for him to do so. 
At first, having read this forum, I thought I would be eating and drinking like most do but I soon realised I was not the same as the majority and I was going to have difficulty.  Are you still trying to have your oesophagus opened up? My operation was done in Devon but I was told it was only a 50 50 chance of success, it was still worth a go though. I sympathise fully with the just wanting to have a drink as that is all I could think of in that first 12 months. I am now almost 4 years without food and still find it difficult.

I am impressed that you have managed to get back to work, I was close to retirement so took that as an early option, I think I would have struggled otherwise. It sounds as though you are doing so well under the circumstances but if there is anything I can do, even from the point of knowing someone else who can’t eat then please give me a shout. I have to be careful about reading the success stories of those who start eating again as it can knock me back and I can’t help wondering if I haven’t tried hard enough although I know that’s not the case.

Take care and keep on plugging away. All the very best.

Clive

jane 13
Posted by

Hi Clive, my consulton i have to say is very good and straight talking but he has said there is no point because the tumour had done a lot of damage already and the radiation has caused so much more.

I had to dilations done , i knew as soon as i came round it did not work as i said i still live in hope you never know a miracle might happen : ) i think this is what keeps me going plus i do have a lovely family and friends . I went back to work to try and get some normality back in to my life otherwise i think i might have gone in to a down would slide my social life has taken a hit :  (  i do join in going out to watch shows i always get invited and go round family and friends ,i got to say it is really hard sometimes then i think well i can't do anything about it then just carry on.

it sounds to me you have done everything you can i am pleased that you can have a drink if i ever get offered a chance for a surgeon to to do anything to help me eat or drink and i had to move town i i would,  I know what you mean about the success stories your so pleased for them but then your still in the same position this is why i keep telling myself one day : ) you never know.

Knowing there are other out there who can't eat and drink  does help because you as you don't feel, oh my god i'm the only person in the world like it : ).

Take care and you keeping plugging away as well.

Jane13

jane 13
Ron51
Posted by

Just to say even though I can eat and drink though both are not easy you can still go out to parties and so on as I find people don't mind if you can't eat anything, I often go to get together's where everyone brings food and find there is nothing I could get down so I just enjoy the company.