Metastatic bowel cancer

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Hi my Dad had bowel cancer 6 years ago and had a big operation and then folfox chemo. 1 year later he had a lung op due to cancer but no follow up chemo. 
He has had no scans or check ups for 5 years (lost in covid they say)  and only got a scan a few months ago because he had Covid and seen lung and liver tumours. 
He is starting folfox again soon but they say can’t have surgery. I’ve heard of target drugs but the consultant said we try this first then we can look at target drugs? Would just like to know if anyone has been through this and got any positive stories? Thank you.. 

  • My husband has just had 6 sessions with another six because the tumours hasn’t shrunk I was always wondering about targeted therapy so will be interested in peoples stories 

  • Hi  

    Sorry to see your name pop up again . 

    My mum stopped scanning . Discharged over the phone during covid and sure enough on a scan relating to another matter in 2022 it was back in her lung . 

    They did offer her Flofiri but she declined as she was 82 at this point and used a target drug , Cetuximab only . She got a great response on it over ten months and lots of shrinkage .  Had she been on Flofiri I am sure she would have had more shrinkage . Your dad is chemo responsive in the past so that’s a positive.

    However it’s back to digging deep and going through it all again . Certainly cause to be hopeful for him . Mum had lymph nodes involved as well and they disappeared too . 

    Mum passed in the summer with other issues but your dad has everything to push forward for and she still has treatment options , fragility got the better of her .
    Your dad has done really well and I will be holding out for more of the same for him .

    Take care ,

    Court 

    Helpline Number 0808 808 0000

  • Hi court,

    thank you so much for replying, as soon as your name popped up I remembered you from 6 years ago. It’s so good you’re still on here to help people. 

    I’m so sorry about your Mum, she fought for so many years and did really well with treatments - she has give people a lot of hope that it can work and to get to a good age of 82 is great. 

    yes such a shame people get forgot about in Covid - it’s affected so many lives.. 

    My Dad has his pic line out in today we did ask for a port as he enjoys his golf and can’t play with a pic line but to have a port fitted it would be a couple of months wait unfortunately. 

    I have heard these target drugs are good but oncologist said to just try folfox first then we can look at target drugs. 

    im so worried and scared but you always make me feel positive with your mum’s story. 

  • There are a lot of rules around some of the targeted drugs, wondered if that might be why your dads oncologist has it in mind for a potential future drug .

    Mum was a star and was out for lunch three times the week before she died . She lived life to her last few days and we do miss her . So fantastic your dad wants to keep golfing . Can the switch it over when his slot comes up . I think that’s so important to keep your life going and engaged in normal activities away from all things cancer . That was certainly mum’s approach.

    Your dad is definitely in the “long Hall “ group of stage 4 patients .

    He has a lot of strength in him .

    Take care ,

    Court 

    Helpline Number 0808 808 0000

  • Hi Court 

    Thanks for your reply, yes there does seem to be a lot of rules involving target drugs it’s like they leave them for a last resort!

    wow your Mum did so well and out for lunch 3 times the week before too, she deffo lived life to the fullest. 

    hopefully they can change to a port line instead but they did say wouldn’t be able to fit it till feb 2025. 

    My Dad has neuropathy in his hands and feet from chemo, he’s been recommended suzi pads but not sure they will make much difference. 

    Thanks xx

  • Hi 

    It would be so good if your dad could get the port . Being able to keep your hobbies going is so important. Hope a wee cancellation opens up .

    Had mum been a bit younger and able to take more treatments I do believe she would have had some success again . Even with just a targeted drug she managed to clear the mediastinal lymph nodes and half the size of the lung nodule . The oncologist wanted to go back and check with the radiologist that they had not made a mistake. There is still a lot to be learnt about longer term survival and how they respond to chemo .

    This is only my grief talking but I don’t think  the five year post op follow up for primary disease is sufficient in a secondary spread . If that was stretched out to ten a lot of people would continue to do well with intervention .

    How are you doing yourself ?

    Court 

    Helpline Number 0808 808 0000

  • Thanks for the posts it helps to read other people’s stories my hubbys had a port since August it has definitely made things easier 

    Hes had 6 sessions which haven’t shrunk the liver tumours so has got another six to have 

    I’m feeling very deflated but he seems ok 

  • Hi court 

    sorry not replied for a while, I hope your doing ok. 
    I’m ok thanks, just worrying lots. My Dad has completed his first session of chemo and speaking to oncologist tomorrow and we are going to ask about about a port. 
    the chemo nurse mentioned target drugs too, can I ask what target drugs your mum was on if you don’t mind. 

    Sorry do you mean when you get a diagnosis they should wait 10 years before re checking or have I picked that up wrong? Sorry. 

    thanks again court and hope your good xx