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.

  • Hi Hazel, sent  you a private message, let me know if you received it Ok. 

    Speak soon Eric

  • Hi Eric, how are the amino acids going? Much help and any side effects? Thanks.

  • Hi TFS

    Amino mix helps tremendously and as far as I can tell no side effects. Had no mucus or mouth ulcer issues. I do not actually use Aminomix at the moment as at 576.00 for 100 sachets the Spanish system would not fund it. Managed to get one 100 sachet box approved so we got our money back. But I now use a better and much cheaper solution. I buy pure glutamen from Bulk Powders ans a full spectrum amino acid from G&G, easily available on line. One teaspoon glutamen, one teaspoon Amino acid full spectrum gives you a better concentration than Amino mix for about 80.00 € . AminomixBi1 is a real rip off, it works if you can get it approved. Hope that helps.

    Regards Eric.

     

  • Thanks Eric, i was getting back pain, which can be a glutamen supplement side effect, but it seems ok, may have been other cause. They gave me another box Friday, they are 355 euros a box of 90 here, i was aware of your solution, pardon the pun, so will go that way if they stop giving me them. Its been not bad mucous wise, and one slight sore, not an ulcer, so im giving the aminos the credit, they are called Aa Mezcla NM, as you say, rip off, saw a guy flogging some on milanuncios for 90 euros musta had some left!  Good luck Eric thanks for replying, ive a long way to go yet, 23 sessions,  looking like Feb 14th before im done, bound to be more issues down the line.

  • Hi I'm sorry this post was a few years ago but my father is 81 and has just been informed his vocal. Chord cancer has spread to his lymph node. They are saying its inoperable as its wrapped around his cortorid artery? He has been given radiotherapy for 5 days a week for 6 weeks. At the moment there is no. Sign of it anywhere else just in this lymph node. My dad didn't want anyone other than his sister (who. Is a nurse) in with him. Any advice would be greatly appreciated. Hope you are keeping well. Amanda 

  • Hi, we will all chip in with advice on handling the radiotherapy, has he began it yet? Best wishes. Graeme

  • He starts in two weeks. He needs another biopsy first apparantly??? He is very apprehensive as am I. Although my dad is 81 he is still very fit and active. Still rides his classic bikes, gardenening, days out with his friends (before covid). He handled his first diagnosis really well and that was a whip it out it's gone type thing. This time round it's knocked the wind out of him. And us. Just want to do what I can to help. Him through this. Anything that people can recommend for side effects etc. Thank you so much for taking the time to respond. X

  • Hi Amanda people react differently to treatment so giving you exact in formation on what to expect can be difficult, weve all shared our experiences on here but they vary so please bare that in mind.

    I had a small tonsil tumour caused by the HPV virus aged 60 at the time Im now 62, it had spread to one lymph node and i`d caught it early and was given a high survival rate 93% so obviously very positive, I had 6 weeks radio therapy, the first two weeks were ok then it got progressively harder to swallow  and became painfull, I tried Oramorph but I didnt like it and got by on liquid paracetamol, the treatment destroys the tissue and all around the affected area it has to in order to kill the cancer cells so taste buds and saliva glands are affected badly and the mouth becomes incredibly dry, you end up carrying a bottle of water around which is vital.

    In my case things started to settle down around a month after I had finished treatment I lost one and half stone but most people lose much more,  its a long road and you have to grit your teeth and get through it, Im now back to normal apart from a dry throat at night so Iv come through relatively well.

    You will get more experiences from the gang Im sure and they are a good bunch, hoping your dad comes through well, If you have any questions dont hesitate.

    Dave

  • 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