Mini update - Lonsurf, trials, etc.

Real Tar Heel
Real Tar Heel Member Posts: 307 Member
edited November 2022 in Colorectal Cancer #1

Hi all, hope everyone doing as well as can be expected.

I started Lonsurf with Avastin in September but the effects were not as hoped. I'm going to be in a trial, however, starting in a few weeks. TBH I don't expect much but the idea of helping others with the results appeals to me. That said, the docs are excited about the possibilities. The option would have been Stivarga but that sounds like SSDD treatment to me. I'll put that one in me pocket.

I read a lot of horror stories about Lonsurf but terrible side effects weren't my experience. Slight nausea which was manageable and fatigue, but that follows all treatments it seems.

My advice, four years and what seems like a million treatments in, is to just jump in with both feet. There's really nothing to lose. If you've dealt with cancer at all, you can deal with just about anything. Take a shot!


  • Trubrit
    Trubrit Member Posts: 5,754 Member

    Hi there, RTH.

    Sorry the Lonsurf was a no-go, and hope that trials prove to be the winner.

    I have so much respect for all of you, who fight on and on and on. Like you say, jump in with both feet, because if you don't, well......

    I haven't been on the forum much, and it is good to see faces like yours, still around.

    Happy holidays!


  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
  • abita
    abita Member Posts: 1,152 Member

    I am on lonsurf with Avastin.

    What trial will you be on?

    I don't know what ssdd treatment is, but when I was on stivarga it worked very well in my lung tumors, but not on liver tumors.

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member

    LOL sorry, SSDD isn't a treatment, it's "Same Shyte, Different Day," meaning it's another chemo/immunotherapy combo like the Lonsurf/Avastin combo you are on. I was getting Avastin as well. Docs think I responded better to the immunotherapy part. This trial is a similar combo, involving two letter-salad named drugs I can't recall or pronounce. Just so happens that the director of the trial is at my hospital. I would have loved to get in on that drug factory trial that someone has mentioned in another thread.

    The only thing I'm concerned about is that not a lot of people experience a response by the chemo. I guess the trial is to see whether the addition of an immunotherapy drug will increase the response rate.

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member

    Oh, I meant to include in my response that even though the response rate seems low to me, the drug does have a significant effect on progression and life span when it works.