New to the site. Neck / Throat Cancer

There I was enjoying life when I get told I have a very aggressive form of cancer in my neck, everything collapsed. After the initial shock I made up my mind to fight it and I will beat it.

Had major surgery on 3rd October at the specialist cancer hospital in Valencia, I must say an incredible place. Apparently the surgery went well. 12th November PEG feeding tube fitted. First Chemo on 29th November, the first three days after the Chemo was not pleasant. but apart from that, the Chemo after affects have not been too bad. I have thirty RT sessions scheduled, they started also on 29th November. I have had twelve so far, first 7 or 8 were fine, since then it has been fairly unpleasant. Very sore throat, taste buds have stopped working, saliva production is close to zero. Food varies in taste from "metallic" to "lighter fuel" or nothing at all. I love my food and I am missing that pleasure immensely. At the moment I can still swallow but the medical team have warned me that will probably stop as well. More RT this week and my second Chemo on Thursday, not looking forward to that. Apart from all that I feel fine, maintaining my weight and apart from maybe feeling tired doing pretty well. The RT specialist is concerned about mucositis and has recommended a full spectrum amino acid drink, Aminomix Bi1 to help combat this condition. 

I would like to hear from anyone with a similar condition and anyone who has been advised to take Amino acids.

Parents
  • 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

  • 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,

    .

  • Hola Eric, ive been awaiting approval to join, as being Spain based too, but the moderator kindly let me join. So what i have been waiting to say, and what you have asked......Amino Acids. Yes! I am on session 6 of 33 so your posts have gave me hope, got the Aminos free, on the end of box one, will keep going thanks to your success with them. 

  • Hi Eric and Barb

    as the sayingbgoes been there done it with the saliva substitute sprays have tried AS saliva spray works but fornabiut 30; seconds bit better in night boots do one called expert again similar results. Plus has various ones given to me by nurses hope they work for you. My sleep was  a bit better than yours I did 2 hours woke spray sipping water sleep from midnight until 0600 then 2 co codomol 8 mg yeah finally reduced the 30 mg ones.

    the drybmouth i have never totally lost saliva which helps no end when eating but it’s got thick n gunky ,which is apparently my saliva  glands working but not fully.  When I think about ut two weeks ago my tongue every time I woke wS stuck to roof of mouth,and now it’s no longer stuck ,making a noise like 2 piece  if Velcro ripping apart !! Nice analogy! But true. 

    Barb sounds wonderful and 38;years is a long time you will get to your Ruby I am sure as you like me are full of positive mental attitude with a strong partner behind you.

    we were both born in West Yorkshire well suppose west riding in those days ,both come from small mining villages so we are country kids as well. Don’t do big city’s at all. 

    Good luck with spray there is also something else online next  that u might consider Xyimelts from the mouth ulcer company ,I have used them but because I am producing saliva they make me make too much !!! They are a small tablet that u literally stick to your gum takes 20 seconds to stick and you get about /3 hours from them in night cost £8.59 ish plus post think Amazon U.K. have them as well. 

    Worth a try I have tried all sorts 

    good luck with chemomr/t and peg this week you are nearly there m then it’s the Long slow haul to recovery just remember tortoise and hare it’s nit a process that can be rushed.

     

    look forward to hearing from you

    Hazel n John 

  • Hineric and barb

    have sent a friend request yesterday should be should on top right if your screen ? Unless coz u are in Spain we may not be able to communicate that way 

     

    h

  • Hi Hazel, folllowed your blog for a while, great to read anything you post here too, so helpful, i am in Spain too and get the reminders so im sure Eric will, keep giving us tips please!

  • Hi TFS

    youre most welcome thank you for reading my blog,I find it cathartic writing it. 

    Ask away when u are ready ,where in Spain are you ?

    Hazel

  • Hi, im in the Canaries, on Tenerife Hazel

  • Hi

    bet it’s warmer there than good old West Yorkshire. Fingers x we fly out to our rental apartment in Murcia province 5 days after result day next Monday.

    keep in touch 

    Hazel 

  • We all hope you do, with great results. Look forward to the vlog

Reply Children
No Data