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

  • Hi Gary

    I joined this site yesterday, you may find it interesting to read my two posts as there is some useful information in them specifically about problems with Mucus. Anyway, best of luck and Seasons Greetings. Let us know how things progress "information is King" you never know how one piece of information may help just one or maybe hundreds of other sufferers.

    Best regards Eric

  • Thank you Eric, it nice to know we are not alone on our journey.

    Gary

  • Hi Gary,

    I wish you well on your little journey and hope side effects kept to a minimum.

    Keep us posted when you start on the 7th Jan and please know thay if there is anything I can do to help i'm here. You are right when you say that we are all different and its can side effects can differ to certain degrees by person. Suggest you try and pile on calories over festive period as that will certainly help with your post treatment etc

    I wish you well and hope you have a happy xmas and new year.

    Best wishes to yo uand your family

    kind regards

    ian

  • Thank you Ian and a Merry Christmas  to you and your family. I will certainly be not watching  the calories for sure.

    God bless you,

    Gary

  • Hi Gary

    good luck I am 15/weeks post radiotherapy  and have written an blog it’s a honest account of how  I felt please feel free to read it and pass it in to  friends and family as it save u explain8ng how u feel. I am a 61 year old wimp if a woman n I don’t I can do it any one can.

    like Ian says there’s ate a few of us in here feel free to pop along anytime will try and answer your questions from a patients point of view.

    blog 

    www.radioactiveraz.wordpress.com

    latest post first so go to bottom for beginning .

    ps you can send me a new Range Rover please if u find the blog helps. Lol only joking we’ve s had 2 last one was new 03 plate she served us well until ghe viscous coupling went in way back from Spain a few years ago !!!!!! That’s a whole story in itself. 

    Where in the U.K. are your?

  • Thanks for your reply, glad you are getting there albeit slowly.

    I have read your blog and it makes interesting reading.

    I know I have a hard road ahead but have a strong wife and family and friends to support  me.

    Not sure I can sort you a Range Rover out but you never know. I am in Birmingham by the way.

    Have a Merry Christmas , and a better new year. 

    Gary

  • Hi Gary

    Thank you for reading blog.

    shucks re Land Rover probably couldn’t afford diesel for it anyway ! Lol

    there us another blog that’s 4 year old by Gary who is in remission now he does come on here from time to time as Vatch his blog is.

    www.gammaraygary.wordpress.com

    glsd you’ve a strong family we certainky need them.

    anywsy keep in touch and fire any questions you nay have forewarned is fire armed 

    emma aka as Newlymarried will probably  drop youa line her hubby Pail are also in remission they are from the Birmingham area.

    One question do you have a primary cancer ie mine was tonsil with diagnosis T2N3 M0 cause H P v 16+ virus ?

    A merry Christmas and a Happy new year although the start will be daunting you will get there and youve spring and  summer to re over 

    Take care let us know how you get on

     

    Hazel 

     

     

  • Hi Hazel, 

    I have it the same as you in my tonsil. Not sure if in lymph node, I have a biopsy  being done today , so will keep you posted. 

    Gary.

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