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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.

just diagnosed, what happens next?

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My PEG was very painful for best part of a week when first fitted...couldn’t lay down and if I did couldn’t sit up...BUT eased as the week went on..I too had a tightening feeling which again eased over the days..

I was determined I wouldn’t use the PEG but I really needed it...used it from 3 weeks into treatment until a good 3 months after...I had no trouble with it after it initially settled down and didn’t lose much weight at all due to being able to get my calories via PEG..

I Had it removed few weeks before Christmas which was very quick...

It will ease for you I’m sure...

Very best wishes

Anna xx

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the spasms are crippling. I'm going to call tomorrow and ask if I can take buscopan. 

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There are apparently several different types of RIG/PEG, I know that when I had mine fitted I was the first or second at the hospital to get the model and was a bit of a celeb because everyone wanted to come and have a look (when I got home the nurses who came round to do the balloon, I was too worried to do it myself, at first didn't believe me when I said it didn't need to be rotated). Initial pain on my overnight stay was minimal, probably due to drugs because when I came home and went to bed without taking anything, because it wasn't hurting, I woke up in total agony in the early hours.

Quickly faded though in the next day or two, with medicinal help; really hope your pain is short-lived pixie!

 What is a Community Champion?

Metastatic SCC of right medial piriform fossa plus four malignant lymph nodes diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014.


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Hi Pixie

My hubby had a PEG fitted and was in a lot of pain for a couple of weeks.

There’s no way he could have had radiotherapy 3 days after it was fitted.

After a week of persevering with the pain we went to GP and he was given Oramorph.

It was 2-3 weeks later when he had his first radio and chemo.

The district nurses were a big help and they still come to change the water in the balloon.

There should be a phone number on the paperwork you were given on discharge. I would call it.

We waited too long before we sought help.

Hubby now manages the tube brilliantly and he finishes his treatment next Tuesday. He’s relied on it for everything for the last week.

But right now the most important issue is to find out why you’re in so much pain and get some medication for it.

Sharon xx

Hubby - Left tonsil squamous cell carcinoma P16 positive with neck nodes T1N1M0 - 30 fractions of radiotherapy and 6 weeks of chemotherapy, Cisplatin in December / January 2019/20

Me - Invasive lobular breast cancer - Grade 2, Stage 2 - mastectomy October 2019 - 15 fractions of radiotherapy December / January 2019/20 

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had my first radiotherapy session today.  they helped me get on the bed. 

chin is now bruised due to how tight the mask was. 

first chemo tomorrow, found out today I'm having 6 sessions of cisplatin.

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We found some nice people during chemo all different cancers so was varied, some not so good as others but all trying to be cheerful, nice when you have 6 to 7 hours to loose, that and some naps.

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Hi now treatment has started things start to fall into place .Not wanting to scare you just bear in mind tomorrow depending what time you have radiotherapy your mask may feel tighter as when you have the chemo you also have a lot of saline pumped into you so you are full of fluid .just thought forewarning you might help allay tomorrow for you.

Cisplatin is the common  chemotherapy that is used for head and neck cancer m again listen to what nurses say yiu will be given tablets to take at home take them as directed ,and if you feel sick amd tablets don’t work let them know . cisplatin is one of the chemotherapy drugs that don’t cause hair loss well done on ticking day 1 off

Hazel xx 

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer 

T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes  later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions.   

Posted by

Good evening Pixie, well done in having your first round of radiotherapy hopefully they will adjust the mask so it's not so tight. How is your PEG doing?

                                                                             Chris x

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

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Hello Chris.

PEG is still rather painful. not had much sleep due to being uncomfortable.

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Hi Pixie

I just though I'd pipe up here to let you know that my PEG was very uncomfortable when it was fitted as well, the first night was horrible . Probably didn't get much better for nearly a week and was uncomfortable for a couple after that. I depended on it once I was on my third week of radiotherapy though and I couldn't have got through as an outpatient without it. I was very happy when they finally agreed to take it out though ! Sorry I cant offer a magic fix to make it less uncomfortable but do mention it to them when you go in and they'll double check to make sure its not infected. Have they shown you how to deal with it and keep it moving ? It will probably be too painful to touch at the moment but, if its the same time as mine its important to keep it from sticking they should have given you a leaflet on PEG care I think..

Take care.


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Why (apart from the cost of instillation) do they still fit the balloon ones as they cause so much pain.

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I have posted before my story about pegs. The only one you should use is a  monarch one it cost a very lot but is the only good one. If the hospital wont fit it pay for it yourself. The Royal London does fit them.


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end of week 3 and I've had enough.

bad tinnitus, sore mouth and mucus which keeps me awake.  its choking me I cant swallow it. makes me gag, talking makes me gag.  so swollen and my lips too

peg fed since end of week 2. cant drink now either. 

I cant do anymore.

Posted by

Pixie76 I’m so so sorry. But surely you don’t want your 3 weeks of increasing hell to have been for nothing? You need to continue with treatment so that you can get better and then get on with your life. Lots of us have done this, it’s total hell, so you can too. But you need help. Your situation is clearly miserable - contact your team first thing today and ask/demand a meeting and answers and help. Worse case scenario(or best depending on how you look at it) is they admit you for a couple of days to get on top on your problems. Pain relief, advice for dealing with mucus, swelling, eating etc. They need to spend some time with you to sort this out and reassure you that you can continue. But contact them first thing so they can plan.......