Roller coaster journey

  • 4 replies
  • 171 subscribers
  • Dear all Although I am new to this forum I am quite a long way along my bowel cancer journey. What has struck me reading the entries is how different everyone’s journey seems to be. My journey started in December 2021 with a bowel resection following an obstruction which turned out to be cancer. I had no real symptoms so a real shock I then had 4 rounds of Oxaliplatin and Capcitabine which was not pleasant but I got through it. In December 22 following a check ct scan and was told I had inoperable peritoneal spread. Luckily the Peritoneal malignancy unit at Basingstoke agreed to do cyto reductive surgery and HIPEC which was amazing and I was so glad of their excellent care x I had this in April 23. I was then told I had the BRAF gene and an mis match repair gene which means Chemotherapy won’t work for me. In July 23 following another check CT scan I now have spread to several sets of lymph nodes so have just had 9 months of immunotherapy Pembrolizamab. Now with increased abdo and back pain I have been told I have another soft tissue mass so no more immunotherapy! I have now been told I can try targeted therapy which I am waiting to start but have also been told my prognosis is a year to 18 months so trying to get my head around that and the implications for my family I am 60 with two beautiful young Granchildren . So what I would say is everyone journey is different and there is always hope and new treatments becoming available xx
  • Hello,

    I read your post and I would like to send virtual hugs. Keep your chin up as much as you can xx

  • Hi  

    Just want to wish you all the very best with the targeted treatment. 
    My mum did ten months on a targeted drug last year and found it more manageable. It also was quite effective for her .

    Do you know which one you are getting ? 
    You have been through a lot but the only reason my mum came off it was a slight growth on one tumour. Other than that it was easier than chemo .

    Take care ,


    Community Champion Badge

    Helpline Number 0808 808 0000

  • Thank you for your reply and kind words and taking the time to read my lengthy post x

  • hi Coffeeapple 

    Thanks for sharing your experiences since being diagnosed 

    I was also 2021 so like you have said we all have a different story to tell. 

    I wish you well and I’m sending you a hug 

    best wishes