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, glad you seem to be coping , I am due to start my treatment  7th Jan. Having 30 radio  sessions with 2 chemo sessions. It really helps reading other people's experience  on here, I know we are all different but it helps. 

Wishing you well,

Gary

Hi Emma, don't rub it in, I went to Villa yesterday  to watch the debacle,  2.0 up half time and lose 3.2.

Anyway,  I will try and drive as long as I can but it is a case of suck it and see.

Hoping you all have a Merry Christmas and a healthy  new year.

Gary

HinEric

Brief timeline

found  Larry the  lymph node early March in Spain thought I had pulled something in my neck above collar bone while biking in the wind .

ni weight loss ni sore throat him ough nomnithing 

cane home 14 May  still there rung drs no’s appointment s thatbweek simsaid ok gemaike 61 limo in neck fir 6 weeks magically an appointment at 12 noon ,

saw dr 15 May immediately put in 14=day cancer pathway bloody hell I though t

saw consultant 29 May did d n a biopsy said latent TB whipped and danced round the room that was the consultant.said she would send it away comes backmweek,later oh by the way got timcheckmfor cancer 

spent a week ok latent Tb where have I got

a wek later walked into rooms bedore I sat down squamous cancer cells sorry I was reckless last week. Umm just a little , shoved camera up my nose pronounced umm cancer in the tounge will have to take half of tongue n 3 Radiotherapy sessions ..how wrong yet again was she.

biopsy 25 June has mri and ct scan week before different consul lovely man gently said cancer of tonsil could have kissed him nothing in my tongue . 

Saw oncology week kater n treatmentbstarted 16/July 7;weeks radiotherapy and 2 chemotherapy sessions been in recovery 15 weeks .

pet ctbscan 3 jan results 14=Jan 

pam h p v 16/+ dr reckons the flu I had late December dropped my immune system n in the cancer popped I had had quinces in thatbronsil in 2003.

cant help with amino acid sorry

hazel 

Hi Eric 

Brief timeline - my hubby first felt a slightly enlarged lymph node on the right side of his neck at the end of October 2015. As he had a cold to be honest we thought it was due to that. However by the end of November the swelling was still there and it had grown. We visited the GP who at first thought it was a thyroid problem. When his blood tests came back clear we saw another GP who immediately referred him on the 2 week cancer pathway to an ENT Consultant. We saw the consultant on the 8 th December, had a Ultrasound with FNA on the 9th December, results confirming SCCancer on the 11th December, CT head and chest with contrast on the 12th December, tonsillectomy and further biopsies 15th December and eventually started 6weeks of Chemoradiation on the 8th February. He had few symptoms other than night sweats and the swelling- no sore throats etc

12 weeks aftet completing the treatment and following his PET-CT he underwent a neck dissection as his lymph node tumour hadnt cleared. 

Hope this hells and good luck

best wishes

Emma

Hi Emma, Ian & Hazel and everyone else on this forum.

Firstly have the best Christmas you can and we hope you have a fabulous 1999, I certainly have every intention to do so. Thank you to all those who gave me their brief time line of events, that really helps.

In my case 11th June, discovered a lump in my neck behind my ear about the size of a grape. GP next day. Full Thorax X Ray, then referred to ENT. 12th July, who was very concerned. TAC Scan one week later followed by a biopsy. 6th August PET Scan. By this time the lump had doubled in size. 4th September, BOMB SHELL, I was told it was inoperable as the tumour surrounded the carotid artery and some major nerves. They said there may be a chance of reducing the tumour using Chemo & RT and treatment will start straight away. They also referred me to the specialist Cancer Hospital in Valencia. An incredible surgeon there was very straight with me, it did not look good but he believed he could operate straight away but there was a chance of severe peripheral damage as it was going to be a very complicated operation. 3rd October, 5 hour operation, they removed a deep agressive tumour 81mm by 51mm in size. they managed to do this with out the need for reconstructive surgery and no major nerve damage, incredible. Felt like I had been hit by a truck, twice. 3 days ICU, then 5 days in hospital. Plans to start Chemo and RT 6 weeks later allowing things to heal. 29th November, first 3 hour Chemo and first RT, then one every day. Second chemo 20th December. And so it continues. Since leaving hospital I have to say I have not felt too bad, pretty good infact up until two days ago (after 2nd Chemo). Really not having a good day today, generally feel rough. Sore throat, very dry mouth, can only swallow liquids in small amounts, Having to use the PEG feeding tube with special liquid food. Still I am about half way through the treatment and no one said it was going to be easy, but I will get through it and I will beat it. Sorry if I have rambled abit but it does help to get "it out there".

My very best regards Eric. 

Hi Gary 

Hope you managed to have a relaxing Christmas before you start your treatment . Baggies snatched a draw today so creeping up on Norwich ! and I see you guys got a draw too . 

Sending you best wishes 

Emma xxx

Hi Eric

ouch yiuve certainky been through it to get to this now  stage .i am now 16 weeks post radiotherapy and have my pet ctbscan in Thursday. Eating and drinking doesn’t get harder but eventually comes back one word if advised use yiu right peg butbtey and maintain your swallow index only sips if water will make it easier down the kine

good luck

keep in yiu h

hazsl 

Thank you, have a happy new year , let's hope we both get promoted this year.

I will keep you posted on how my treatment  is going.

Gary

Good luck Gary

shout out if you need to know anything or just a general rant

hazel

Thank you Hazel, really  appreciate  it,

Happy  New year.

Gary

Hi Hazel

Best of luck for Thursday, let me know how you get on, I assume you will have to wait a few days for the result.  Did your RT affect your taste buds. If so how long did it take for them to recover. My last RT is on 14th Jan and my last chemo on 10th Jan so you are a good 18 or so weeks ahead of me. Did you get any problems re Mucas or mouth ulcers.

Best regards Eric.

Hi Hazel

Best of luck for Thursday, let me know how you get on, I assume you will have to wait a few days for the result.  Did your RT affect your taste buds. If so how long did it take for them to recover. My last RT is on 14th Jan and my last chemo on 10th Jan so you are a good 18 or so weeks ahead of me. Did you get any problems re Mucas or mouth ulcers.

Best regards Eric.

Hi Eric

thamk you. Will do am due at hospital at 1245 for pet ct scan my Radiotherapy finished 31 August .i will get the results on the 14 th  January at 1230 we have flights booked to Murcia the 19 th !,, for 3 weeks then ferry booked end of February for longbstay  we renta longvteem an apartment in the Mar Menor quite often get to el fondo the nature reserve near Crevielliente  think you are in that area ? U never know we may meet up at something point. 

Inhad mouth ulcers in my right cheek from week 2 my next back tooth disappeared for 12 weeks into my cheek which was painful every time I took a tabketbor sucked food n drink but git used to it. .i also had a radiation burn the full length of my tongue from week 4 up until 3 weeks ago. My oncologist knew that would happen as the margins he wanted to take couldn’t avoid my tongue he didn’t tell me until radiotherapy was over it has  now atrophied and is a white lumpy jelly  nice. But  I can eat and drink not alcohol but that’s fine I practically stopped drinking 10 years ago.

mucus oh yes I had the stringybwallpater paste for weeks , then put on carbusistine which dried it up but then u are left withith drybmouth so it’s the worst if 2 evils.

i never lost tats buds which again is a good/bad thing as I could taste everything and it’s wasnt always pleasant inhad home made soup one day tasted like I had emptied the Mediterranean Sea in it. Wher people who lost taste could eat anything  but in long run some are still struggling with taste and mine is ok. 

Dont know if you’ve read my blog 

www.radioactiveraz.wordpress.com

fingers x for you keep in touch .

for the ulcers I was prescribed Gelclair £74/for a weeks supply! Didn’t work for me but lots swore by it 

hazel

Just an update from me, im nearing the end of week 5 of 6 and can still taste fine, swallowing surprisingly good if I dont try to swallow large amounts..I had toast yesterday :), after losing 8 lbs last week Im now steady again, taking plenty of fluids on which is vital to recovery. Iv stopped taking the Oramorph as I hate being constipated, still on the liquid Paracetamol and Pregabalin.

I must be a veteran now as Im seeing new patients starting treatment in the waiting room, just 8 sessions to go and feeling ok ish. 

Dave

thats great Dave and good to hear you doing so well ..

hope this keeps up and and let us know of your continuing progress

kind regards

ian

Good luck it’s a strange feeling coming towards the end if treatments and seeingbthe new people Just starting.

i had my final pet ct scan today results  in 10 day a time .was so strange going back to them cancer centre feeling so well ,when I think back to my last week if radiotherapy,radiation burns on neck 3 rd degree and tongue. My aim tidaybwas a sandwich from boots and I did it ,it’s  the little things 

hazel

Hi Eeic

justba quickmword scan went fine ,couldn’t get the  cannuela in but that’s not unusual for me ,nurse was a bit crabby but apart from that  the lying down for an hour chilling was fine .Only in the scanner 20 mins so took my mind in one of our favourite bikes rides and only got to the cafe and tostada stop before theybcame in for me . Thus time I felt a bit yuicky maybe the radaiation serum affected me more than last time but noting that s 90 min nap didn’t cure. Throat is like superglue but managed porridge and c up of peppermint tea. Braving the outside word and going out for lunch hopefully today.

how are you doing ?

Hazel

Hi Hazel

Glad everything went well with the Scan, we will keep our fingers crossed for the results. You sound as though you have turned the corner and are on your way up.

Personally, I have good mornings and bad mornings dependant on how much sleep I´ve had, this morning is a good morning. Throat still very sore. Another RT today, then only 6 more.. Would love to meet up with you at some mutually convenient location at some time in the future. We actually live in Sax, about 30km inland from Alicante up in the mountains. Will you still be here in March, don´t think I will probably be in any fit state to socialise before then but you never know (country boy, tough little sods) but we will arrange something.

Re mucus, ulcers and dry mouth. At the beginning my RT specialist recommended a food supplement called AminomixBi1 which is basically 5g of Glutamin and 2 g of full spectrum amino acids. Which they have "the pleasure" of charging 578.00 for one months suppy, however I found a better alternative for about 80.00 euros for one month. Neither is available on prescription here. However bought the first pack of Aminomix then got our money back later. Been taking the alternative, no mucus, no ulcers and yes I get a dry mouth but just keep sipping water. I also use a mouth wash called Perio Aid with 0.12% Clorhexidina and a 99% pure Aloe vera mouth wash and gargle they both seem to work pretty well.

I am full on the PEG routine for food, I can still swallow liquids but any food substance in my mouth tastes like a "turd wrapped in nulear waste" and makes me want to vomit. Apart from one day when we miscalculated quantities and I crashed 6 kilo´s in 2 days I am maintaining my weight. Both my wife and I are real foodies and the thought that I could loose that pleasure in life is frightening. We have a one week trip planned in May then a another trip in August, coming back to the UK (Pembrookshire), some fabulos "eating houses" in this area, not that there is anything wrong with Spanish restaurants, it just makes a change.  Originally we had a trip to the Maldives planned for this Feb, we have put that back to 2020 so we have plenty to look forwar too.

Keep us informed as things progress

Best regards Eric.

Hi Eric

on this trip we fly home 7;February for just over 2 weeks then on the 23rd of February sail out ifvPortsmouth to Santander planning 8-9 week stay .

Yes we have driven past Sax on a few occasions when we were first staying near Torrevieja,now we take the A30 atbthensplit after Albacete .

would love to meet up either you could come to us give the Jag a spin down to the Mar Menor we are 5 mins away from SAN Javier airport which moves on the 14th inland ,so at min we can walk to apartment building but on this trip we’ve hired a car .

Or we could meet half way or come up to yiu We both like the country side and john n the hubby is into his bird watching ,

sleep last night I was every 2 hours just to sip water then between 0600 and 0900 I sleep really deep likewise my nap atbtra time  20 mins but feel like hours .

Thank you for the tips I struggled to get my drs to pay for the Ensure food supplements only ones I could tolerate they wanted  to give me something twice as much liquid half the calories ! They just don’t get it inwas struggling to drink !! No peg was offered in the end I had to complain and get the CCG involved I won in the end  but it was so wrong ,maybe if I  never worked  I would have fared better.so no chance  if getting anything else off them  I am even buying my own co codomol as u can’t get in to drs for another week as my prescribed ones are now too high a dose ! Even used the cancer card with reception but it didn’t work ! NHS at hospital cancer leval brilliant lower down leaves a lot to be desired all budget budge budget.

But like you say slowly does it, we are off to North Wales in May have booked a cottage for a week for us a nd daughters family , we too like our food I haven’t lost taste buds which is a plus point and deffo getting better on the food scale unfortunately meat's the hardest but casseroles are fine a piece of rib eye rare is a longbwayboff I fear lol but small price to pay.

take care will keepmin touch

hazel

Hi Hazel

I am sure I will be "firing on al cylinders" by the end of March / early April and it would be great to meet you in the not too distant future. Where how and when is very dependant on how we both feel health wise. I suggest we think about that a little nearer the time.

I do not know what happened yesterday I slept for nearly 15 hours (only 6 pee breaks) and felt really good this morning, refreshed, no pain, unfortunately that did not last long. The first reflux took care of that, my own fault, laid down flat too soon after being fed.

I could not have survived without the PEG, my wife feeds me 4 times a day a total of just over 2000 calories. I was prescribed Ensure to start with as a "drinkable supplement" but as soon as I switched to the PEG, they prescribed SondAvant, which apparenly is better when using a PEG. I cannot believe you had to go through all that "agro", that´s the last thing you need.

When are you in Wales in May?

Like you say everything we are going through is horrible but it´s better than the alternative.

I am making a list of all the foods I am really missing, on which I am going to overindulge when I can actually taste the food. I would kill for a Big Mac and fries right up to a steak tartar or a fillet steak with foie in a pond of red vermouth reduction. Scallops, I love scallops. I could go on and on. Luckily we live near some very very good restaurants, not necessarily a fancy restaurant but "the food" is fabulous.

Have a great week and hope things continue to improve.

If you feel in the mood, tell us a little about yourselves

Speak soon.

RHi Eric 

sounds like a plan for late March early April.

i will send you a friend request then we’d can chat without everyone seeing it if that’s ok ?

i n the meantime 

Wales 23 May cottage near Portmadog 

me married tomJohn 40 years in June next year .

previous to retiring I was manager of a business travel unit in Barnsley ,I worked in travel from being 16 finished at 52 

John from being 18;worked in the coal mines as a deputy supervisor) underground hence why when he retired we originally took our caravan to Spain in Feb 2015 tima really lovely quietbsite near Los Montesineos. Unfortunately afterv2 years we turned up to a version of Benidorm on speed ! The Spanish owners has been hoodwinked by a conman from Wigan who thought he could re create Benidorm Palace  bybhiring 2 nd rate turns. Our pitch was one of 15 that was badky affeccted . We went back in September and had one nights sleep where we weren’t disturbed so the office wouldn’t do anything so we found a lovely estate agent in Los Alcazares whomintuen hooked us up with a 2 bed apartment 10 mins walk to sea and went backmtook our stuff out of caravan putbherbup,dormsale and walked away. A shame as we had spend 3000 euros in a fixed canopy but that’s life .caravan sold in 2 monthes .then last Januarybthe conman did a runners owin a reported 30,000 euros !!!

we have the apartment in a rollingb12 month c ontract ,it’s in a residential block of 12 which we’ve only ever rvseen 2 other neighbours,the majority live in Madrid and come in Augustbwhen it’s too hot for me .

We cycle a lot and birdwatching.

we have one daughter Nicola 37 one grandson James .Nicola is corporate governance manager for Heath education England. ( NHS).

Yep,got this week to get through  then bug meeting next Monday I have faith in my consultant who is a really great man.Top,leader in his field so cantbask morebthan that,

look forward to hearing a bit more about you as well.

15 hours sleep wow !!!!!! My sleep pattern now I am coming slowly iff the tablets my sleep last  night I managed an hour asleep 2 hours tossing n turning but like you say small,price to,pay Just greatful thatbwe are alive .

Will tell you what stage I am at now .

the mouth feel s like it’s got glue in it permanently so bad that when I spit in sink which  i can assure u is nit normal I abore spitting !! It’s that thick that the cold water tap turned in full will not shift it !!!

plus heartburn creeping in so in the gavisxon tablets.

agrer re food apart from scallops I am allergic big style to those.

i keep thinking shall I try a macdonalds as well !!!!!! Strange as normally I wouldn’t .

dont know if you’ve read my blog it’s got pictures of me on it.

www.radioactiveraz.wordpress.com

cheers

Hazel ps just tried mango juice it’s gone down ok 

Good Morning Hazel

First thing, lousy night about 2 hours sleep. In the middle of the night I had an epiphany, surely there must be a Saliva Substitute on the market to help stop this dreadful dry mouth symptom. Barbara went to the chemist and has found an oral spray, from Lacer, seems to work, the test will be tonight. Look on line there are a number of products available from the UK. let me know how you get on.

Yes, please send a friend request!

A bit about us. Barb and I, 38 years married, (second marriages) complicated family best left alone. I´m 67, Barb´s 75 and a very beautiful lady. I retired when I was 48 then after a year providing consultancy, fulfilled our dream and moved to Spain when I was 50, 17 years ago.

Barb has had an interesting career path varying from shop assistant to Prison Officer to a fully qualified psychotherapist, not only is she beauitiful she´s very clever. Originally from Bristol, we met in the Isle of Man when I was there on business.

Me, country boy, born in a little village in Hertfordshire, left school with two O levels, apprenticeship as Electrical Engineer. Switched to a selling career mainly in the world of Military Communications, data colection and encryption then Security Systems in Military situations. Got my first Directorship when I was 34.

We both love travel and have been lucky enough to travel all over the world. Food lovers, as I´ve said before. Did start and run the Jaguar Club in Spain for 7 years, left that alone about 9 months ago.

Looking forward to meeting you in March /April.

Barb has just called, time for another PEG feed.

Busy week this week, more Chemo and RT and Dr´s appointments so don´t worry if I take a few days to answer.

Have a great day, best regards from Eric & Barb,

.