NED was fun while it lasted

Steve444
Steve444 Member Posts: 105 Member
edited March 2015 in Colorectal Cancer #1

A PET scan late July of last year showed no evidence of disease (from stage IV treated with FOLFOX and Avastin).  By October I quit chemo, but stayed on Avastin so I'd have more energy and feel better through the holiday season.  I finally had another scan last week which shows 4 active tumors in my liver.  After my oncology appointment today I'm in research mode as the doctors and I decide how to move forward.  If anyone has experience and opinions around any of them, feel free to share.

I'm waiting for an appointment with a specialist to discuss the possibility of directed radiation therapy (TheraSphere?).

Otherwise my oncologist is weighing adding Vectibix to Avastin, or FOLFURI with Erbitux.  I have some reading to do for the upcoming conversation.

At least it's just active in my liver, my rectum and nodes are still looking good.  Looking forward to experiencing the new chemicals and side effects.  :)

Comments

  • NewHere
    NewHere Member Posts: 1,427 Member
    #2
    Urgh

    So sorry to hear about this.  Now back on the ride to beat it again.  I am just starting chemo, so do not have any experience with treatments.  Thoughts are with you in this...

  • sflgirl
    sflgirl Member Posts: 220 Member
    #3
    Sorry

    Tough news.  I'm currently on Folfoxiri plus Avastin. dont know what your side effects were but mine are manageable so maybe it will be for you.  Have you talked to your docs about HAI pump?  (Hepatic Arterial Infusion).  I will be asking about it Thursdat at my next Chemo.  Apparently a good alternative for unresectable liver mets.

    Best to you,

    andrea

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    #4
    sflgirl said:

    Sorry

    Tough news.  I'm currently on Folfoxiri plus Avastin. dont know what your side effects were but mine are manageable so maybe it will be for you.  Have you talked to your docs about HAI pump?  (Hepatic Arterial Infusion).  I will be asking about it Thursdat at my next Chemo.  Apparently a good alternative for unresectable liver mets.

    Best to you,

    andrea

    Yikes

    Hi, Steve. Sorry to hear that.  I"ve had nearly all the chemos that Kras Wild type people can have, with mixed results. i'm coming up on my three year anniversary of living with this disease.  I've never been a candidate for surgery - was rejected each time.

    Now I"m in a clinical trial, my second. 

    Do you only have mets in your liver, or are they in the primary site and in other places? What's the percentage of liver that is covered by tumors? If it nears 75%, your liver will likely start to fail.  I was at 60% last summer which was pretty scary; got a lifeline from Stivarga, which was good.  People on this board with liver tumors have tried different things - the latest was cryotherapy/cryo something...   HAI pumps, like sflgirl said, have helped many people.  

    good luck

    Karin

  • Steve444
    Steve444 Member Posts: 105 Member
    #5
    lilacbrroller said:

    Yikes

    Hi, Steve. Sorry to hear that.  I"ve had nearly all the chemos that Kras Wild type people can have, with mixed results. i'm coming up on my three year anniversary of living with this disease.  I've never been a candidate for surgery - was rejected each time.

    Now I"m in a clinical trial, my second. 

    Do you only have mets in your liver, or are they in the primary site and in other places? What's the percentage of liver that is covered by tumors? If it nears 75%, your liver will likely start to fail.  I was at 60% last summer which was pretty scary; got a lifeline from Stivarga, which was good.  People on this board with liver tumors have tried different things - the latest was cryotherapy/cryo something...   HAI pumps, like sflgirl said, have helped many people.  

    good luck

    Karin

    Thanks everyone

    Sflgirl, I will look into and bring up the pump.

    Karin, I initially had a 9cm primary tumor in my rectum, a few lymph nodes infected and innumerable mets in the liver across both nodes.  I'm not sure of the %, but the scans looked like close to 90% was lit up.  Right now, I only have recurrent tumors in my liver, 4, each under 2cm.  Tiny dots really compared to what it looked like a year ago.  I am excited about what I've read so far on TheraSphere, but haven't seen much yet on what people are like a couple years out.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #6
    Sorry

    I'm sorry that they found more activity, but hopefully you and your doctor can explore different avenues of how to approach this to eliminate it.  It's just so frustrating at times.  You are in my thoughts for a good plan ahead.

    Kim

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