Hello EricB,

Welcome to this forum and am sorry to hear of your throat cancer diagnosis.

I myself was diagnosed with throat cancer earlier this later summer and finished 6 weeks of radiotherapy 3 weeks ago.

I have kept a little note of my little journey on here and you might want to read..It's under living with cancer and titled "Radiotherapy for throat cancer" which I hope you find helpful.

The symtomps you desribe are pretty much expected and ones that I have experieced/still experiencing still, after treatment complete.

Still stuggling with food and am on supplement drinks called Ensure to help get fuel in bosy as I was not fitted with a PEG.

Mucus was bad for me as well and I was up during the night every half hour at its peak but I would say around the end of second week, the mucas kind of calmed down although I do still have a dry mouth constantly. I was advised and have done from the start and drink around 3/4 litres of water every day which has definetely helped. I also use lip moisturiser to keep lips moist..

Like your self Im missing my food and can resonate with the metalic taste and still have this just now and look forward to a little progession on this front.

As for swallow, were you told to do swallow exercises every day?...I would not say that swallowing stopped but was little more noticable but manageable and the trick was to drink drink then drink as it also helps recovery and uses throat muscles, which in turn helps swallowing.

I wish you well on your journey and you are welcome to ask away with any questions or if you just wanyted to chat, there is a small group of us on here that have been through thoat cancer personnaly and are able to offer any help/support/ answer questions and a few of us are at different stages so that helps. Hazel has a blog as well and am sure she will be along to say hi as well and is a great source for tips etc as well.

Keep in touch and posting on your journey as you are not alone my friend and stay positive.

kind regards

ian

Hi Ian

Thank you for responding, and thank you for your kind words, really interesting to hear about your experiences. Had a dreadful night, very sore throat and extremely dry mouth. Traces of blood when I rinsed my mouth. 

Interesting, your experience with thick mucas, I believe its called Mucositis and can also lead to severe ulcers in the mouth, throat and on the tongue. My RT specialist here warned me about this just before treatment started. She recommended I take a full spectrum Amino Acid Supplement with high levels of Glutamin. She said they have had good results using this. I have been taking three doses every day and so far no problems with Mucus or ulcers.

Day 14 of RT, nearly, half way through, well at least I´m nearly on the home run. Second Chemo tomorrow, really looking forward to that - NOT.

Had a session with the PEG team yesterday. Given instructions on how to feed, drink and administer medication, very thourough. They also made some fairly drastic changes to my prescription. Changed the food and various medications so that they are suitable to be be administered via the PEG.

The RT Specialist said mouth hygene is of prime importance so I use a antiseptic mouth wash / gargle three or four times a day called Perio Aid and I have just started rinsing my mouth and gargeling with a 99% pure Aloe Vera, a bit early to tell but I think it helps, it certainly took the "edge off" in the middle of last night.

I have taken note from you about drinking lots of water, shame you cant get Gin and tonic flavoured water, not that I would be able to taste it.

I would be particularly interested in hearing from anyone who can give me an idea of how long the side affects take to improve, especially the taste function.

To every sufferer out there, I send best wishes lots of luck, may I also take this opportunity to wish you all a Very Merry Xmas and a Happy, Prosperous and Healthy New year.

My very best regards Eric

Hi Eric,

lol re gin but proabably not the best idea...Ive actually totally given up alcohol and not has an alcoholic drink since 15th June and have to plans to in the future and just prefer to go tee total as can do without.

Mucas can be little debilitating and annoying and anything that helps you then great...I have been using Caphosol tablets around 3 times a day and apparantly they really help as its a mouth wash that kinda has the mucas stick to then rinse away. I was also prescribed Difflam mouthwash which I swear by as also leave nice fresh mouth.

You are nearly half way through treatement and it soon goes in...as its daily are you still getting your treatment xmas day/boxing day?
I have no knowledge of Peg and am hoping to avoid at all costs even at the price of having to drink these damn "Ensure" drinks every day for food supplements.

Woundt worry re little traces of blood when rinsing as lot going on with throat at moment and lot rinsing using more so to be expected.

If you are very sore and in pain are you on any pain killers yet?..around this time in my treatment I started oral morphine which definately helps no end and thereafter started to increase dosage which I would imagine would be the same with you.

One of the best tips I got on here from Hazel was to buy a pack of Curaprox toothbrishes from Amazon. I bought a pack of 3 and these are really quality soft bristles which I swear helped when brushing teeth and made easier and more tolerable.

Again, i my opnion and experience and advice from staff was to drink and drink as much as possible throughout as will help during and after treatment.

I hope you are still managing to get out and about in your lovely car by the way..which part spain are you staying and whats the weather like just now...mild enough in Scotland but assume a little more warmer where you are.

So best wishes to you and your family over xmas and new year period and please keep posting and keep in touch throughout your journey and hope both you and gary find our little group of some help and comfort as you go along

kind regards

ian

Hi Ian and other followers, like you I am completely off the booze and will probably go Tee Total apart from the odd Brandy on special occassions.

Re Mucas problems, as I said I have no Mucas problems. My specialist prescribed AminomixBi1 primararly as a preventative and cure and luckily they paid for the first box (100 sachets) as it is 576.00 Euros a box (why I do not know). When I looked at Aminomix it is not anything special, just a full spectrum Amino Acid food supplement with high concentrations of Glutamin. Anyway, we have found a better product much much cheaper. Glutamin can be bought easily on line for around 16 Euros (500g and a full spectrum food supplement for about 57 Euros, available on Amazon. This seems to work for me. However I will look into your recommendations.

Re PEG feeding tube, dont be wary of it, a few minutes under to have it fitted and I must admit it is a bit weird having a tube sticking out of your body but no pain and no discomfort. Here they would not start RT without it being fitted. So should my swallow function stop or it gets too painful to swallow, food, water and meds can be administerd easily, pain free - just takes time, but if you do finish up needing it dont be afraid, it´s fine.

Re Xmas etc, not sure yet which days will be treatment days, My guess is no treatment on Xmas day, New years day and 6th Jan (Three Kings Day) should know soon.

Re your question about pain killers, none at the moment but I can have them if I want.

Re drinking (water), I will be making extra effort to drink more, I will let you know how I get on.

The weather here (inland from Alicante) is fabulous at the moment, blue skies and sunshine, chilly in the mornings but 70+ by lunchtime. Still "forcing myself" to take my beloved Jaguar out at least once a week, it does lift the spirit. Scotland for you, a beautiful part of the world but a little too chilly for us.

It is so good to be able to talk to others who really understand, thank you to all of you that contribute and I hope my rersponses help you.

Hi Eric,

And thats why we are so so lucky with our NHS system.

Not sure arrangements outwith, but in Scotland all our medication needs are totally free.

I am on morphine/mouthwashes/months supply of Ensure drinks -. 6 a day. Other non related medication for back and water tablets.anti sickness meds..soluable paracetamol and other misc..

My GP and Radiotherpapy team have been great and have prescribed every single thing I have needed at no cost at all and without a murmur.
I know paying via national insurance contributions, but its a wonderful system when you need it most and the thought of paying for all the constant medication required and on a long term basis would be quite daunting for many and in fact would be a stuggle to finance in many cases.

I have nothing but the highest praise for our NHS in the main. Does your EU card not cover you for medical costs? Just curious as you may find your meds turning into quite an expense if I have picked you up correctly.

I forgot to mention that one of the tips that I got from Hazel was to get a nebuliser, which I did from Radiotherapy dept on loan as long as I need. This also helps quite considerably and its little mask over nose/mouth which releases saline and helps clear the muscas. I still use post treatment but I would highly recommend trying. They are quite cheap on Amazon and its definataly worth considering as i can vouch it was a great help for me.Use at night just before bed and a couple of times during days worked wonders.

Kind regards

ian

Eric

Just a little side note re cars as I like the look of your Jaguar and would be nice driving in such nice climate.
I love Scotland as climate is pretty much mild all round..Sods law for me re cars as I treated myself to a new Mazda CX5 SUV and I love it as so comfortable to drive. I picked it up on the saturday bu was then diagnosed with my cancer on the Monday which took a bit of the shine off, but hey ho still positive.
Get out when I can but since car picked up 29 June I have 1300 miles on the clock !

Look forward to geting out in my new toy more as soon as poss and am just doing little drives periodically.

Kind regards

ian

Eric

Just a little side note re cars as I like the look of your Jaguar and would be nice driving in such nice climate.
I love Scotland as climate is pretty much mild all round..Sods law for me re cars as I treated myself to a new Mazda CX5 SUV and I love it as so comfortable to drive. I picked it up on the saturday bu was then diagnosed with my cancer on the Monday which took a bit of the shine off, but hey ho still positive.
Get out when I can but since car picked up 29 June I have 1300 miles on the clock !

Look forward to geting out in my new toy more as soon as poss and am just doing little drives periodically.

Kind regards

ian

Hi Ian, if I can help with anything I am sales manager for the largest Land Rover dealer in the UK, we also have Jaguar.

Best wishes

Gary

Hi Gary 

many thanks....I will have a brand new jaguar please..thats very kind of you lol.. will even let you surprise me with the colour.

always liked jags and I would really love to own a top range rover in white...but Im really happy with my Mazda CX5 SUV and lovely to drive and its brand new. A shame im a little restricted to driving it just now..

 I will assume then that both you and Eric are Jaguar owners.

kind regards

ian