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.

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  • 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

  • I was similar, not exact same, operation to remove " cyst" , weeks later lab found cancer cell, so 7 weeks radio, no chemo.

    Dave's advice (Oscar) is spot on, look out for Hazel and Ian coming along, in fact they have a blog each, very detailed. If you go back  a few pages look at posts by " anchor" that is Ian you will see link to his blog, and i think  "radioactiveraz.wordpress.com"     is Hazel's  one, good luck stick with us.

  • Dave thank you so much for sharing your story with me. It has given me some hope that he can fight this and come out the other side. I'm pleased everything is going well for you. Amanda x

  • Thank you. I will have a look. Hope you're doing well on your treatment. I have never been through anything like this before and everyone seems so amazingly supportive. Seeing my father become quite distant has been hard. He only seems to perk up once he sees my daughters. The 3 year old is a grandads girl. Thank you for taking the time to reply with your kind words. X

  • Amanda If your dads cancer is caused by HPV then its one of the most treatable ones, you say he`s quite fit and that is a huge plus too x

  • Hi Amanda This is Hazel aka RadioactiveRaz I am now 30 month post radiotherapy for tonsil cancer with several affected lymph nodes.As Dave and Graeme’s already said the treatments hard recovery’s can be varied ibwas 61 when diagnosedniw backnto living my life ok I carry a bottle of water around with me and have a 20 min power nap most days. (Hi Guys hope all ok) my blog is www.radioactiveraz,wordpress.com hope it helps if yiu need anything just message 

    it’s hard but diabke I was am a wimp I did it 

    Hazsl x

  • Thank you Hazel. Going to have a read of your blog. Glad you're doing well? It has given me hope that he can get through this. I am going to have a read of your blog. Thank you xx

  • Hi Mand

    I'm Ian and pretty much went through the same treatment at the same time as Hazel and Dave.

    I've posted a link to my blog that I kept as well and as I am often quoted, there is light at the end of the tunnel and you do get through this.
    Let me know if I can help in any way

    regards
    Ian

    radiotherapythroat.home.blog

  • Ah, great so all the contributors i know are in touch,  Dave, Hazel and Ian, these plus myself and you have a wealth of experience to confer with, best wishes, G.

  • Hi if I can do it anyone can. It's not easy but it is doable 

    any help just shout out 

    Hazel x

  • Good to hear from the gang of 4 hope you are ok looks like it :)

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