Just Found Out Lonsurf Stopped Working and Cancer Growing

NewHere
NewHere Member Posts: 1,429 Member
in Colorectal Cancer #1

And to think I was bummed about the Knicks getting knocked out early or the Yankees playing horribly.  Laughing

Time to move on to a trial.  I know the next move if the trial does not work, but want to get ready for the next move when/if the move after the trial move.  Yup.  I plan ahead.

My doctors still have no idea how I can be breathing as well as I do.  Well actually they do, my crazy exercising.  LOL.

Keep moving people.  It helps.

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Comments

  • Tueffel
    Tueffel Member Posts: 327 Member
    edited June 2021 #2
    Bumped

    I am bumped to read these news. I dont know why but since April I feel only bad news are coming in here... at least Lonsurf worked for some time for you and I am sad that this effect is gone now. But you are fighter so I hope the trial will be good for you. My fingers are crossed.

    Tueffel

  • worriedson714
    worriedson714 Member Posts: 333 Member
    edited June 2021 #3
    I to have noticed the bad news

    That seems to be here so much lately and this is yet more so sorry to hear this will be praying that you find a trail and it works and gives good results. 

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited June 2021 #4
    Poo!

    That's not good news. 

    Keep up the crazy excerise. Keep on living.  It has to get wearing, so many treatments. I'm glad that you have, and are able to pursue your exercise routines.

    Run with the Wind, New. We will run beside you. 

    Tru

  • abita
    abita Member Posts: 1,152 Member
    edited June 2021 #5
    So sorry to hear this. What

    So sorry to hear this. What is the next move if not a trial?

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    #6
    Sorry New, hope you find a

    Sorry New, hope you find a good trial starting up. Immunotherapy sounds so promising, things just need to get happening now. Keep going hard and figure it out...................................................Dave

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    #7
    Man, just terrible.  You are

    Man, just terrible.  You are on it with looking for something else.  That's good.

    Let us know what you find!  keep on Running....

  • NewHere
    NewHere Member Posts: 1,429 Member
    #8
    Tueffel said:

    Bumped

    I am bumped to read these news. I dont know why but since April I feel only bad news are coming in here... at least Lonsurf worked for some time for you and I am sad that this effect is gone now. But you are fighter so I hope the trial will be good for you. My fingers are crossed.

    Tueffel

    I got about 16 months from it Tueffel

    So that is good.  I just got keep on hanging on until the next thing.

  • NewHere
    NewHere Member Posts: 1,429 Member
    #9
    worriedson714 said:

    I to have noticed the bad news

    That seems to be here so much lately and this is yet more so sorry to hear this will be praying that you find a trail and it works and gives good results. 

    Thanks WS

    I am going to keep on pushing.  I still have some left in the tank to try.

  • NewHere
    NewHere Member Posts: 1,429 Member
    #10
    Trubrit said:

    Poo!

    That's not good news. 

    Keep up the crazy excerise. Keep on living.  It has to get wearing, so many treatments. I'm glad that you have, and are able to pursue your exercise routines.

    Run with the Wind, New. We will run beside you. 

    Tru

    Yeah Kind Of Stinks Tru

    Really not what I wanted LOL.  

    It is 50 rounds of chemo (almost, this one is cut short to make sure I am not on anything in case a trial requires no treatment for 30 days prior).  

    I will get my butt on the bike trainer tomorrow and keep on going.  Then run tomorrow or Friday.  Weather has been awful for outdoor things the last week.  Prefer outdoors when I can for running.

  • NewHere
    NewHere Member Posts: 1,429 Member
    edited June 2021 #11
    abita said:

    So sorry to hear this. What

    So sorry to hear this. What is the next move if not a trial?

    Trial Then HER-2

    I did qualify for a trial last year.  But was staying on Lonsurf as long as it worked.  Contacted the trial to let them know it was time.  I should be good to get in.  They basically said I had a spot whenever I wanted when chemo ran it course (assuming trial was still going, which it is.)  My primary oncologist is looking to see what has opened at MSK.  It has been a year and a half since we looked for trials since I had the one.

    If the trial I am about to go in does not work (or is closed), I may try some HER-2 treatments and/or trials.  The mutation is common for breast cancer, but there are indications the treatments may work on colon cancer with the mutation. It seems about 4-5% have it.  I got lucky on that one.  So I am already going to start looking for after the trial and after HER-2 for the move.  Will look more in the next week or so.  Running through things to see immediate moves.  Hopefully it is trial.  May need radiation on one lung met.  Unsure.

  • NewHere
    NewHere Member Posts: 1,429 Member
    #12
    beaumontdave said:

    Sorry New, hope you find a

    Sorry New, hope you find a good trial starting up. Immunotherapy sounds so promising, things just need to get happening now. Keep going hard and figure it out...................................................Dave

    Hanging In

    When I was diagnosed, Lonsurf was not approved for colon cancer.  It has kept me going the last 16 months.  Immunotherapy has made leaps and bounds.  I am going to do my best to stay phsyically as strong as possible.  My exercise has kept me in a lot better shape than I should be based on what is happening on the inside.  It is catching up a bit, but I did a 6 hour 8 minute  bike ride followed by 37 minute run two weeks ago.  Slow.  But 6:45 minutes straight through.

  • NewHere
    NewHere Member Posts: 1,429 Member
    edited June 2021 #13
    SnapDragon2 said:

    Man, just terrible.  You are

    Man, just terrible.  You are on it with looking for something else.  That's good.

    Let us know what you find!  keep on Running....

    Run New Run

    I need to find that box of chocolates soon.  LOL.  I am going to get on bike tomorrow.  Today kind of stunk.  So took a day off.  And had a drink.  And ice cream.  LOL

  • abita
    abita Member Posts: 1,152 Member
    edited June 2021 #14
    NewHere said:

    Trial Then HER-2

    I did qualify for a trial last year.  But was staying on Lonsurf as long as it worked.  Contacted the trial to let them know it was time.  I should be good to get in.  They basically said I had a spot whenever I wanted when chemo ran it course (assuming trial was still going, which it is.)  My primary oncologist is looking to see what has opened at MSK.  It has been a year and a half since we looked for trials since I had the one.

    If the trial I am about to go in does not work (or is closed), I may try some HER-2 treatments and/or trials.  The mutation is common for breast cancer, but there are indications the treatments may work on colon cancer with the mutation. It seems about 4-5% have it.  I got lucky on that one.  So I am already going to start looking for after the trial and after HER-2 for the move.  Will look more in the next week or so.  Running through things to see immediate moves.  Hopefully it is trial.  May need radiation on one lung met.  Unsure.

    It was absolutely the smart

    It was absolutely the smart thing to do to stay on a drug while it was working!

    Glad you have a trial lined up, and what sounds like a viable backup if not. 

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    edited June 2021 #15
    Sorry to hear this, New. You

    Sorry to hear this, New. You are in my thoughts. Thanks again for helping so many of us here. Keep running!

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    edited June 2021 #16
    The Knicks getting kicked to

    The Knicks getting kicked to the curb was pretty bad but this news is far worse. They are doing one of the merck mRNA trials down here I think you would qualify, it's kRAS mutation, one with the experiemental drug and experimental drug plus Avastin I think.

  • NewHere
    NewHere Member Posts: 1,429 Member
    #17
    Who Would Think There Is Something Worse Than Being A Knicks Fan

    RTH, never thought it could happen.  But I think I agree, this in all likelihood is worse ;)

    Which trial is the mRNA one?  I contacted the trial I qualified for yesterday (they had a spot for me) and have not yet heard back. I am probably a bit more sensitive on the timing then they are.  LOL.  

    This is the one:

    https://clinicaltrials.gov/ct2/show/NCT04166435

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    edited June 2021 #18
    It's this one

    It's this one

    https://clinicaltrials.gov/ct2/show/NCT03948763

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    #19
    I am sorry

    I hope you are able to find a trial that helps, you are so incredibly strong! 

  • MandiePandie
    MandiePandie Member Posts: 109 Member
    edited June 2021 #20
    Bummed

    Im sorry for this turn of events but like you mentioned, maybe you did get lucky with the mutation. Im hoping hard that means you will respond well to the trial :). 

  • PamRav
    PamRav Member Posts: 348 Member
    edited June 2021 #21
    Lonsurf

    You did have a good run with this drug.  You're the first person I've heard had such good results.  I may be headed down that road soon, how were the side effects?   
    im glad you have an actionable mutation.  I wish you great success in the trial.

    Keep running, you are such an inspiration. 
    p

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