Abunai update

Abunai
Abunai Member Posts: 173 Member
in Kidney Cancer #1

I should have thought of having just one thread for myself to keep updated as my journey progressed, but I must have had other things on my mind when I first joined this forum.

After being dxed in Sept. of 2016, I had a radical nephrectomy to remove an 11.5 cm tumor on my left kidney. Several other mets were missed and/or not scanned for at that point, and I ended up the ER a week later with no lower extremety function due to a large met on my T6/T7 spine that had compressed my spinal cord. After emergency surgery from a cocky, strange, initially off-putting, but brilliant neurosurgeon, I was eventually able to walk again (with a cane, for moderate distances). I also had all of my remaining mets located and baselined.

The remainder of the T6/T7 tumor was radiated away, then I was initially placed on Votrient as my first course of medicinal oncology treatment.

Despite the nasty, demoralizing side effects, the Votrient didn't work for me.

In March, I was accepted to a clinical trial that paired up Nivolumab (Opdivo) with CB-839.

I found out last week, in the midst of recovering from cancer related hip surgery which I wrote about elsewhere on this board, that the Nivolumab is working for me!

Only one of my tumors, which was not considered a "target" tumor as part of the study, showed any growth. All of my other mets were contained and there was no progression.

I get to stay on the Nivolumab for now.

I'll post any further updates of my personal progress on this thread.

Thanks for listening, and thanks for your support, everyone.

«13

Comments

  • BoondockSaint
    BoondockSaint Member Posts: 242 Member
    #2
    Excellent news!!

    Excellent news!!

    glad you are getting some results.

  • stub1969
    stub1969 Member Posts: 978 Member
    #3
    Super!

    This is good to hear.  I'm hopeful for more positive results.

    Stub!

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    #4
    Congratulations, have been

    Congratulations, have been following you since last year and understand that you have been through alot. Please keep us posted with all the future good news. Best wishes!

  • rhominator
    rhominator Member Posts: 233 Member
    #5
    Thanks for the udpate

    Encouraging news for those of us on Opdivio. I'm very happy the treatment is working for you! Smile

     

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #6
    Hey there, Abunai, thanks for

    Hey there, Abunai, thanks for taking the time to update us! Remember WE are on YOUR journey if you want us to be LOL.

    WE care about YOU! WE want to support you in any way you may need.

    But a big WHEW.. glad your treatment is working!

    Gentle, healing hugs,

    Jan

  • sandy23
    sandy23 Member Posts: 143 Member
    #7
    That's great news, Abunai.

    That's great news, Abunai.  How are you feeling?

  • Max57
    Max57 Member Posts: 177 Member
    #8
    Congratulations

    Spread the good news ! Thanks for the update 

  • Dutch1
    Dutch1 Member Posts: 152
    edited May 2017 #9
    Good news!  Glad that you've

    Good news!  Glad that you've shared it.  I'm happy for you.  Keep it going!

    Dutch

  • APny
    APny Member Posts: 1,995 Member
    edited May 2017 #10
    That's very good news! So

    That's very good news! So happy for you!

  • foxhd
    foxhd Member Posts: 3,181 Member
    #11
    Nivo is AWESOME stuff!

    Many people are going to live longer and better due to nivo. I'm happy you got to respond to it. Share your secret with BDS. If you have any areas that can get radiated, go for the abscopal effect. Your timing might be right.

  • todd121
    todd121 Member Posts: 1,448 Member
    #12
    Glad to hear it!

    I hope it keeps working for you for a long time!

    I'm not sure why they don't investiage us more often when they find a kidney tumor? I think it's because those initial docs are urologists and they are just focused on doing their kidney surgeries? I'm not sure. I had a lung xray, but no chest MRI until after my nephrectomy. I also didn't have any tests on a suspicious spot on my right hip (no nuclear bone scan) until after the nephrectomy and no brain MRI until after the surgery either (done by my oncologist as a baseline).

    Glad they are figuring things out and you're making progress now.

    Best wishes,

    Todd

  • Abunai
    Abunai Member Posts: 173 Member
    #13
    sandy23 said:

    That's great news, Abunai.

    That's great news, Abunai.  How are you feeling?

    Thanks, Sandy

    Mentally, I 'm feeling pretty up-beat, knowing that the Nivolumab appears to be working for me.

    Physically, I'm feeling beat-up from the hip surgery still.

    Up-beat, beat-up...wow. sorry for that play on words.

  • Abunai
    Abunai Member Posts: 173 Member
    #14
    Thanks, all!

    Thanks for all of the kind thoughts!

  • LMD828
    LMD828 Member Posts: 26
    #15
    Abunai said:

    Thanks, all!

    Thanks for all of the kind thoughts!

    Thanks for your updates - I

    Thanks for your updates - I've been following your progress recently.  My husband was DX in December, 2016.   He had a radical neph. and has lung and bone mets. Been on Votrient since Feb with some success but tumors on spine and hip cause so much pain.  Both have been radiated, but not feeling much relief yet.  I will keep looking into "next steps" if / when Votrient ceases to be effective.  Again, thanks for the hope!

  • Nekocat
    Nekocat Member Posts: 11
    edited May 2017 #16
    Thank you truly for sharing

    Thank you truly for sharing what has been going on with you it truly makes me feel not alone.

    I hope that your success and progress keeps moving forward and thank you again.

     

  • Abunai
    Abunai Member Posts: 173 Member
    #17
    foxhd said:

    Nivo is AWESOME stuff!

    Many people are going to live longer and better due to nivo. I'm happy you got to respond to it. Share your secret with BDS. If you have any areas that can get radiated, go for the abscopal effect. Your timing might be right.

    Abscopal Effect

    I had to look up "abscopal effect".

    Hadn't heard of it, but love that it exists. My immune system is in high gear right now.

  • Deanie0916
    Deanie0916 Member Posts: 626 Member
    #18
    Great news, Abunai

    I hope this works well for you. Prayers and hugs to you.

  • Abunai
    Abunai Member Posts: 173 Member
    #19
    Six month scans

    My second set of progress scans while on the Nivo/CB-839 study shows no new mets and no progression in the existing mets!

    My left foot and lower leg are jacked up and still in intense neuropathic pain two months following my hip surgery. They must have tweaked my sciatic nerve pretty good. I'll keep working the PT on that leg and hope that the pain eventually subsides.

    I'll bask, for now, in the good scan news. :)

  • Forger
    Forger Member Posts: 20
    #20
    Glad To Hear...

       ...From someone further down the Opdivo Road that I am, and that you're seeing progress.  I just had my first infusion Monday after being on Votrient for 6 months.  I look forward to your updates.

  • sandy23
    sandy23 Member Posts: 143 Member
    #21
    Awesome News

    I have been wondering how you were.  I can feel your sciatic pain.  One thing that helps me is to stand on a wooden box (or big book) with your "good" leg and let the "bad" one softly swing back and forth.  Don't force it, just get it started and sort of let it pendulum at your hip.  You can feel it release.  It works well for me so I wanted to share in case it might help ease your pain a it as well.

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