Need some help for my husband

Amylee37 Member Posts: 2 Member
edited September 5 in Colorectal Cancer #1

Hey everyone 

I was wondering if someone could help me out. My husband has stage 4 Colorectal cancer and his treatments aren't working anymore. New mets have been popping up and also he has a fistula that has formed . So the Oncologist suggested going on Lonsurf.(He has been on FOLFOX and also FOLIRI) Is it a good idea for us to try that or is there anything else that could work?


  • NewHere
    NewHere Member Posts: 1,419 Member

    Welcome to the boards. I am 9th Year Stage IV. I started on FOLFOX, then FOLFORI w/Avastin. ( I was in one trial between FOLFOX and FOLFORI but it did not work).

    I went on Lonsurf with a bit of trepidation. Like all these drugs people react differently. But Lonsurf was pretty easy for me and shrunk my tumors a bit - about 5% - and stayed on almost a year. Got into a couple of more trials, not much success. Had my cancer grow crazy the start of 2022. Had surgery, radiation and into my forth drug trial. Which has been working since July 2022. Tumors stable or shrinking. One tumor needed radiation last month, but overall doing well.

    So give Lonsurf a shot but also keep an eye out for drug trials - search on NHI site. Also get testing done like Foundation One which looks at mutations an other things in the cancer and what treatments work or trials targeting a mutation etc. (note many places do this testing. I am at MSK and try do it. But I had the Foundation One test done 6 years later. Tumors can change).

    if cancer is somewhat stable - meaning though some popping up none are a high level threat - perhaps getting into a trial may be the way to go since Lonsurf is still possible.

  • Amylee37
    Amylee37 Member Posts: 2 Member

    Thank you so much. We will give that a try. We are not ready to give up !

  • lizeden
    lizeden Member Posts: 1 Member

    My husband is in the exact same situation. He just started Lonsurf and has done one round. His CEA went up, so we are worried. They are going to add in Avastin hopefully with his next round. (He had brain metastasis this summer and went through surgery and gamma knife radiation. They have to wait several months to start the Avastin after brain treatment evidentially.) I’m hoping adding in this other chemo will help. Let me know how your husband is doing. I’ll be sending tons of positives thoughts your way!