Questions about secondary treatments

jhuffmiller
jhuffmiller Member Posts: 5
in Colorectal Cancer #1
When I was 26 (April 2011) I was diagnosed with Stage IV colon cancer that had spread to the liver. I started with Folfox and that worked well until my body developed an allergy to oxaliplatin. Then I switched to Folfiri with Avastin and that didn't work at all. Then I had surgery - I had my colon removed (I have a colostomy) and I had a liver resection. Less than a month after the surgery I had a lot more spots on my liver. I started Folfiri with Cetuximab and that worked for a while, but just stopped working. Now I have two small spots on my lungs and a bunch of spots on my liver (biggest one is 2.5 cm). Now my doctor wants to start me on a new drug Stivarga, but that isn't a great option. Unfortunately, everything I've read says there are no good options left.

Is it possible to get radiofrequency ablation, then get it every few months as the cancer grows back? Is it possible to use something like that as a way to maintain it. I know there's probably no way to cure me now, but I don't want to just give up. Also, I know I'm not eligible to put on the transplant list, but if I have a relative that wants to donate half of their liver to me, does anyone know if that is an option? My doctor says it isn't, but does anyone have any experience with something like that. I would think that if I could get a healthy liver, then do the radiofrequency ablation on the two small spots in my lungs that I'd be in much better shape than I am now. Please, I'm just looking for anyone that has blown through all the first stage treatment options, and what worked best after that. Thank you so much.

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #2
    Welcome to the board
    Oh my goodness you are so young to have this disease.

    Can you tell us what part of the USA or World you are in? It might help in finding you a place for a second or third opinion.

    Are you in a major city facility or at a smaller facility for your doc and treatments? I had to look up Stivarga as I had not heard of it before. It appears to be the tablet form of regorafenib.

    I am sure that others with chemo experience will chime in. Have you or your doc looked into clinical trials?

    I am hoping that someone here will be able to tell you of other treatments available.

    Marie who loves kitties
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #3
    welcome to the family
    Sorry you had to find us,
    I am on removab, it's an off label experimental use that's supposed to be effective
    For liver Mets. Read my blog if your interested.
    I hope it works, I am gamble my life on it and I only got one.

    Smile if you can, read colocan posts, always great science happening.
    The only catch is sometimes we need to travel to the treatments we need.

    Let your relative keep their liver, you find a way to fix yours I pray.

    Hugs,
    Pete
  • jhuffmiller
    jhuffmiller Member Posts: 5
    #4
    Lovekitties said:

    Welcome to the board
    Oh my goodness you are so young to have this disease.

    Can you tell us what part of the USA or World you are in? It might help in finding you a place for a second or third opinion.

    Are you in a major city facility or at a smaller facility for your doc and treatments? I had to look up Stivarga as I had not heard of it before. It appears to be the tablet form of regorafenib.

    I am sure that others with chemo experience will chime in. Have you or your doc looked into clinical trials?

    I am hoping that someone here will be able to tell you of other treatments available.

    Marie who loves kitties

    I live in southern NJ. I am
    I live in southern NJ. I am about 15 minutes from Philadelphia and 2 hours from NYC. The surgery I had was at the Mayo Clinic in Minnesota, so I've been to a few places around the country talking to different doctors and surgeons. Stivarga was just approved a few weeks ago I believe, but from different things I've read I'm not too optimistic about it.
  • jhuffmiller
    jhuffmiller Member Posts: 5
    #5
    pete43lost_at_sea said:

    welcome to the family
    Sorry you had to find us,
    I am on removab, it's an off label experimental use that's supposed to be effective
    For liver Mets. Read my blog if your interested.
    I hope it works, I am gamble my life on it and I only got one.

    Smile if you can, read colocan posts, always great science happening.
    The only catch is sometimes we need to travel to the treatments we need.

    Let your relative keep their liver, you find a way to fix yours I pray.

    Hugs,
    Pete

    Thank you so much Pete, I
    Thank you so much Pete, I will definitely research removab. I'll check out your blog, and hope it does work for you. Unfortunately for me travel isn't much of an option. I'm fairly young and didn't have too much savings when this happened. I spent most of what I had out in Minnesota for my surgery. I have insurance, so coverage isn't an issue, but traveling isn't that easy. Thank you again for your recommendations.

    James

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