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FOLFOX & FOLFIRI no longer working for stage 4 bowel cancer

Faithisamust
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Hi,

I am very new to the forum in terms of participating but over the past year I've been an avid reader and often drawing support from the posts and other's experiences.

My mom was diagnosed with stage 4 bowel cancer over a year ago which had spread to her liver. After starting her on FOLFOX the plan was to try to shrink the tumours and hopefully operate. However, the cancer continued to spread and grow on her liver and now lung whilst she was put on a 5 month break waiting for the operation and she was subsequently put on FOLFIRI as FOLFOX had caused severe neuropathy. 

Within 3 months of the new regime it was found that the treatment was having little or no effect and I decided to have an emergency meeting to discuss her options. Her Oncologist informed me that chances are she would not qualify for SIRT having not met the criteria, eventhough this is the most suitable option to reduce the numer of tumours on the liver so they go in and operate. She also suggested we looked into private healthcare as there are drugs that can be used that are not available through the NHS, but having looked into this insurers are not happy to cover a pre-existing illness (as expected) and private treatment will cost us tens of thousands if not more.

Can someone please offer some advice? I don't want to give up on her when I know there must be something that can be tried. 

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    Hello Faithisamust 

    Really sorry to hear that FOLFOX and FOLFIRI caused severe neuropathy and are no longer effective. It was very proactive of you to arrange an emergency meeting to discuss your mum's options - it was a good idea to do that even though I can imagine it was frustrating to hear that she would not meet the criteria to qualify for SIRT. It must also have been upsetting to find out that private treatment would not be affordable. We have some information on our website comparing NHS with private cancer treatment which you might want to look at.

    I hope that you will hear from others here who have been in a similar situation before and that they will have some good suggestions for you. Our nurses are also available on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm if you wanted to talk things through with them. 

    Best wishes to you and your mum during this challenging time, 

    Lucie, Cancer Chat Moderator

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    There should be some NHS treatment your mother can have what works somewhere somebody must know something that will help her hope they find something. Good luck I've been stage 4 for over 3 years now it's not curable but I can live with it for (I've not much choice really) I have to keep having kemo now and again, good luck.

    Billy 

  • Offline in reply to Moderator Lucie

    Thank you very much. I will take a look at the links you sent.

  • Offline in reply to Billygoat

    That gives me great encouragement and definitely something I will share with my mother.

    I will be having another conversation with her Oncologist to see where we can go from here but I am so sure that there is soemthing that can be done.

    Thank you for your input.

  • Offline in reply to Faithisamust

    Hi Faithisamust, How are you and your mother . I hope your mum is doing well ,  My mother has been diagnosed as stage 4 cancer . She had colon resection on 28 th of July , was been told there is 9 mm spot in the liver just need to monitor . Now , on 7 th of September , oncologist staged mum so cancer as stage 2 and suggested mum to take oral tablet called capecitabine as he thinks oral tablet can prolong her life . After 2 weeks , after the ct scan , they said the spot in the liver has increased to 11 mm and there is another tiny lesion so changed the whole treatment to folfox infusion with pump for 3 months and to see if the cancer will shrink and the liver surgeon can check if it’s operable . After reading your message , I am very worried if the chemo doesn’t work and be incurable . K would really appreciate your help what shall I do ? We are starting the chemo in 2 weeks .

  • Offline in reply to priya86

    Hi @Priya86,

     

    I'm really sorry to hear about your mother and can completely understand some of the emotions you must be feeling right now.

     

    Unfortunately my mother succumbed to her illness and passed away at the end of last year. The FOLFOX programme only worked for so long and the TACE procedure the same. 

    Personally I believe researching and looking into treatments available worked somewhat for my mother. if it wasn't for my research we wouldn't have found out about TACE as she didn't qualify for SERT. 

     

    In regards to the FOLFOX regime, my mother found it brutal but everyone's experience is different I guess. She lost sensation in her fingers and toes and her hair begun thinning among other permanent changes. All I can suggest is to ensure your mother is eating a balanced diet, keep up her fluid intake and her positive mindset. 

     

    I doubt I was much help, but I pray your mother gets through this because she sounds like such a strong woman.

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