Hi,
My Dad has had Nasopharyngeal for 5 years now and he can't tolerate anymore Chemo due to the aspirational pneumonia (think thats how you spell it)that he has constantly, this morning he went into a hospice and i am so glad he has. After leaving him tonight i am so much happier as he already looks a humdred times better than he did last night, also my Mum will get a good night sleep for the first time in a long time.

Up until about 2 months ago he was living on veg+fruit juices but since then he has hardly been able to eat much and this last week he hasn't been able to eat or drink. The hospital wanted to put in the feeding tube but he hates it and we don't want to put him through anymore invasive procedures than we have to as his body + spirit is just so tired.

However, at the Hospice today one of the Doctors said she would like to see about getting a peg fitted for him, the only thing is they can't do that at the hospice and i know he really won't want to go into the Hospital. We left off telling him for today as he is not in the most receptive of moods at the moment although he did tell me today that he is ready to fight this disease which is the first time in a few weeks that he has had that kind of positivity.

I don't know much about a peg only from what i've read on this site, can anyone tell me a bit more about it and more importantly if you think it is worth it for him to get it fitted. Ultimately i know it will be his decision as everything has been up until now but he does listen to what the family think and he trusts us. I hate to have to admit that i really don't think he has much time left with us which makes this decision all the more vital.

I would welcome any advice on this
Thanks for reading
Ally

Hi ally get him to have the peg it seems a pain in the a**e BUT it is really good in the long run he can get his food through it and live we are here if you need us

Hi Ally,
I am having a PEG fitted this Monday and I have to stay in the RAH overnight, I hear that the OP is not to evasive and being able to get nourishment into the body makes it worth while,
Thinking of you both
Stay Strong
TREV

Hello Ally,so sorry to hear your dad is in distress.The hospice is such a wonderful place .My husband was diagnosed with nasopharyngeal cancer nearly 2 years ago.He had a dreadul time through treatment and it took a year and half to actually get him on his feet post treatment .Ultimately it was the hospice who achieved this for him .Paul had his peg tube fitted nearer the end of treatment and it saved his life basically as he could not eat or drink anything.He had this removed 10 months later and is now managing fine although he still has copius musous and dry mouth .

The peg tube is a fairly easy proceedure and Paul found it not distressing at all .The benefits are ten fold Ally as it makes feeding and fluids easier to administer without needles and extra drips plus the administration of medicines and pain relief can all be done through the tube in his tummy easily and effective therefore giving your dad the best care . I am sure the hospice would not have suggested this if they thought it would be a pontless excercise.
I hope this has been of help Ally with your decision.My husband is in remission at moment and we just hope and pray it does not return .

Thinking of your dad and the familly Ally you will be in our thoughts
Bell.

Hello Ally

There is much advice in the discussion on PEG problems and PEGs. You can also search for previous discussions on PEG feeding using the Find button to look up the keyword 'PEG'.

Hope that helps.

Best wishes
Vinod

Dear Ally,
I have been on peg feed for excatly seven years now which has meant seven years of not even sipping a drop of water. Its now become a part of my life(for what its worth!). A peg tube is handy as one does get enough nutrtion to keep one going and in fact doing well. Being on a peg feed, I lead otherwise a pretty normal life and you could read my tryst with the peg on the main page in "Ananths Story".
Would be glad to answer any of your questions.
Love,
Ananth

Hi Ally,
If your dad is unable to sustain himself then a PEG may be his only option. It will really take the preassure off him not being able to eat. & for many of us it has been a life saver!
Wishing you all well,
Michelle

Bell,
I've followed a few of your posts from when Paul was going through treatment.
I finnished treatment for Nasopharyngeal Cancer at the end of last year.
How is Paul doing now?
Best wishes,
Michelle

Hello Chelle, did see your posts and have tried to follow them myself ,Paul is doing alright at moment considerabaly better than last year as he had a dreadful time post treatment and was bedridden for months after, with constant vomitting ,peripheral neuropathy and awful tremors .It was the hospice who managed to rehabilitate him thank goodness.Now he has resumed a normal life of sorts where he can eat most things really providing there is a sauce .His mouth is very bad poor taste, no saliva production at all so relies on water and glandosane .He also has recurrent cold sores and now takes aciclovir tablets 1 a day and this keeps them under control.His personality is much changed in the sense he is more laid back which is good ,but he can become very emotional .Considering his treatment and the fact I thought he was not going to come through it ,things are good.He still has copious mucous problems though which can be difficult and the left side of his nose is blocked with adhesions they say which restricts things .There is apparently an operation for this but not advised at the moment .Paul does not use the internet at all LOL .Says he prefers the old paper and pencil.We would be very intersested to know how you are finding life post treatment Chelle ,How are your energy levels ?,Paul still struggles with long walks and still needs an early bed if we are out during the day .It will be 2 years for Paul this december that he will have finished treatment .He still has to go to clinic every 6/8 weeks and they put the camera up to check area .Pauls NPC was at the back of the naso pharynx attached to the bone part at top of spine in the neck they said .Not sure if I have explained that very well .Will go back into posts Chelle and catch up with your story would love to hear from you .
Thank you for asking about Paul .

Hope you are well and happy ,Bell .

Thanks Bell,
I also had the hardest time post treatment. Waking up just to vomit, dropping to 6stone 10. I also have the neuropathy & find it tricky holding a pen, but have found my way round it. I dobn't have too much of a mucous problem, i just get a round ball i have to clear once or twice a day. I have no saliva - but like paul i manage with lots of sauce/gravey/cream etc. Thankfully my taste isn't too bad, though sometimes it takes leave! No cold sores for my, but i get enormous ulcers quite often & sores. Sometimes if i'm really dry i find it hard to breather through my nose which is strange. Got persistant tinnitus thanks to the chemo to. & i can't open my mouth very far.
BUT i'm back to work full time & socialising again. I do get quite tired. I normaly wake up feeling like i've not slept which is frustrating. I to have to have earkly nights if i have a long day. But i do feel great! & even though i'm not as i was before i'm used to my new life now! My tumour came from the back of the nasopharynx and came right down my left nostril. What symptoms did Paul have before he was diagnosed? What treatment did he have?
I'm a year out in december so it seems you guys are a year down the road from me!
Thanks again Bell,
Michelle