Hello

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I was diagnosied with oesophageal cancer and at my MDT meeting I had some large nodes in tummy that also needed a biopsy they could not tell from imaging from Pet scan if cancer or not , last Monday inhad a biopsy through back to the node in tummy , today I got the results tomatoes it was cancer , so spread to lymph nodes bit not to other organs yet , they said no operation for me as I thought I’d be having flot/ op/ flot - my consultant said surgery is not an option but they are now checking to see if the node is HER2 postive if it is he can offer me a new trial treatment - or I can have capox chemo 

can anyone please tell me if they have experienced this or been on capox and how long for and did it shrink tumor etc - b rate I have a disabled boy you needs me and I need to be around for him , all inhave done is cry cry and cry - they have asked me to defer treatment till next week and wait to see if her2 postive and th en inhave a choice to do capox or trial - I’m all over the place and just can not process this - please someone give me some light - I’m 56 years old and I am so scared - anyone else not had surgery and doing well just in chemo 

I rang Macmillian and spoke to a lively nurse this evening who explained it a little better and gave me this group info

thank you in advance 

  • Hi,

    I’m sorry that you have found your way to this place. Somewhere none of us ever wanted to be. I’m afraid I can’t help you with any information about Capox as I went down the FLOT-OP-FLOT route but I’m sure there will be others along shortly who will be able to help and hopefully offer some positive encouragement. I know that there are many who have been treated with a mixture of one or more of chemotherapy, radiotherapy and immunotherapy. I’m sure your medical team will find a combination that is best for you. Try not to give in to despair. You’ll need all your strength and positivity for whatever route lies ahead. I wish you well. CB

  • Just a note to say I read your post and I am thinking of you. This forum has been hugely helpful.

    There are a lot of people doing really well  on here who have just had chemo so I hope that helps

    Stay in touch with us :)

  • Hiya

    My husband has been on the Capox regime since the end of December along side Pembro (immunotherapy ) He reacted unbelievably well to this . He was actually able to eat food 3 days after his first round . He was Stage 4, incurable and inoperable. Fast forward and the tumor shrunk to an operable size . He had Ivor Lewis on the 2nd June . He had his last round of chemo 2 weeks ago , still on the Capecitabine. He had a scan after surgery which showed no sign of the disease. He has a pet scan on the 16th September. He's gained and maintaineda healthy weight . He eats and lives almost like before . The chemo certainly got harder . He tried to describe the dark days to me but the couldn't. Been a hard slog . 
    Wish you all the very best , this forum has been a huge support to me 

    Tiff 

  • It may helo you to know about my husband is 83 and diagnosed in january with oesophagael cancer turmour in lining of oesophagus with nodules on the lung inoperable tested for immunotherapy and has been on capox since February

    The nodules on the lung have gone and the tumour has shrunk

    He suffers with fatigue and loss of appetite so the specialist halved his capacetibane tablets and had a week off them altogether. last month

    The medication can be debilitating as described but he's able to enjoy life to a certain extent and we're lucky with a fantastic specialist who listens and helps us next scan in october our 3rd scan so here's hoping for more positive results.

    These forums really help to understand and feel part of a support group who contribute valuable information.

    We also were devastated as everyone is at the beginning thinking "why me" but learned to live with it and hope all will be well as it has been so far.

    Take a day at a time and all the support offered to you. With love