10 years post diagnosis, on a trial, it's working

Hi everyone. I haven't posted in a while. Rocky summer, trying to stabilise the disease. Anyway, here I am, I'm 3c, BRCA1, in my 10th year, several recurrences, on a trial which is working! BIBF? Cyclophosphamide and nintenib daily pills. The nintenib could be a placebo but given my symptoms(non itchy rash) think l may be on the real thing. And first results after 2 cycles, CA125 halved, which is good. So onwards eh ladies! Have a good day, Merylx

21 Replies

  • So glad you have found something that's working 😃👏🏻👏🏻

  • This is so good to hear. 10 years...... I have just had my first recurrence after 5 1/2 years and was feeling pretty despondent until I read your post. Glad t hear the trial appears to be working. 🌻🌻

  • Really pleased for you! Long may it continue 😍

  • Your news is so reassuring and positive, I'm stage 3c too and although I'm keeping my chin having just been diagnosed in June I'm still coming to terms with what this means. Thanks for posting, you have just helped me have a good day! x

  • That's great to read your news , a real positive ...I am on Immunotherapy trial , and if it doesn't work , I will be on what you are on ! Onward and upward ! Enjoy the day x

  • Oh wow ! what a good result, you must be thrilled. I know your post made me smile :)

  • This has made my day, thanks for posting xx

  • Fantastic news,gives hope to everybody going through this evil disease.Wishing you well for the future.x

  • Thanks for posting , great news really delighted for you and so reassuring this can be treated like a chronic disease . Keep us posted how you get on with rest of trial. Best of luck

  • Wow oh wow!! What a fantastic piece to read! I'm 3C diagnosed last December finished chemo in June and now on Avastin maintenance programme until March. You just made me beam and fill more positive! Thanks for sharing it really does mean so much! 🌹🌞 Michelle x

  • Hi there, welcome to the site, great you are doing well apart from the rash which I am sure there is a remedy for, best wishes

  • Brilliant, I failed this trial on half a point on my liver test.

    Great news for you.


  • Hi Meryl - great news. I am at 8 years. Can you tell me the name of the Trial? Thanks alot - Nicola


  • Meryl1, that's great news!!!!! Thank you for posting. I'm praying that if I have to fight this battle again that the cure will be better and have less side effects.

  • Hi Meryl, great news that your trial is working, lo ng may this continue. Fabulous that you are 10 years down line despite having several recurrences. Gives us all hope. Thanks for posting. Ann xx

  • Great to see the words 10 years and also you have managed to get treatment that is showing good signs of working for you.

    Ellsey xx

  • Great news to see. Wishing you well and you never no if the next new thing is the one! Fab news.

    E xxxx

  • what a lovely read! so pleased to hear your news. yes helps alot to feel more positive xx im stage 3c 18months ago.

  • Wow 10 years im so glad to see that because everything ive read says 2 to 5 years, this gives me hope and a goal now, thank you so much

  • Thank you for sharing this post, it gave me some hope on a dark day. Long may you progress and keep getting better xx

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