Nivolumab-Sutent trial scan results BMS-936558

Darron
Darron Member Posts: 310 Member
edited July 2013 in Kidney Cancer #1

Hello all!!

I am happy to report that my scan results on week 24 of the trial show no measurable disease!

I started with a 3.4 cm tumor in my adrenal gland and two small lung nodules. The nodules are gone and my adrenal gland shows no measurable cancer yet is still slightly enlarged. I am actually happy to continue wih two more cycles to make sure it is completely gone. I scan again in 12 weeks this time. Hopefully I will be done with treatment and move into scan only mode.

Sitting in the chair now sending some kick **** thoughts to Fox, OnePutt and ohers for paving the way.

Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #2

    Well, those are results that justify a posting!  Great news and we all share your hope for what follows now.  The trail-blazing by Fox and John is being backed up by experiences like yours - we're in a very different ball-game from even 5 years ago, aren't we?

  • garym
    garym Member Posts: 1,647
    #3
    FAN-EFFIN-TASTIC!!!

    We love it when cancer gets wiped out, not long ago there were few options and little hope, but that is changing fast nowdays.  I'm thrilled for you and your family, CONGRATS!!!

  • DonMiller
    DonMiller Member Posts: 109
    #4

    I was really happy to read your post this afternoon.  Great news and congradulations!!!!

  • MDCinSC
    MDCinSC Member Posts: 574
    #5
    You Rock Darron!

    Way to set a benchmark!

    Now, we'll put all that positivity to work for a few others, named and not named!

  • Limelife50
    Limelife50 Member Posts: 476
    #6
    Great Darron

    I am happy to hear how well you have responded,i am sure you and your family are very happy!!!!

  • alice124
    alice124 Member Posts: 896 Member
    #7
    Darron - Can't tell you how

    Darron - Can't tell you how happy happy we (John and I) are to hear your results. Knew you could do this. Congratulations!

  • foxhd
    foxhd Member Posts: 3,181 Member
    #8
    alice124 said:

    Darron - Can't tell you how

    Darron - Can't tell you how happy happy we (John and I) are to hear your results. Knew you could do this. Congratulations!

    it's the best stuff

    and so easyto take. I had hoped that it would be the only drug I would need. I hope it is for you.

  • danbren2
    danbren2 Member Posts: 311
    #9

    It really makes me happy to read post like this one! There is hope!

  • Bellweather
    Bellweather Member Posts: 102
    #10
    Awesome news
    Great news indeed! Was not an option at mda so hdil2 for me. SURELY it will become standard practice soon, thnks for sharing, we are all thankful for those paving the way!
  • MDCinSC
    MDCinSC Member Posts: 574
    #11
    I'll dance at your wedding!

    Or your next wedding as the case may be!

  • LynnLuc
    LynnLuc Member Posts: 22
    #12
    Nivolumab

    I have Stage 4 Melanoma and I did Nivolumab along with peptise injections at HL Moffitt,  I did them every other week for 24 weeks and then rec'd booster infusions of Nivolumab every 3 months for 2 years. I was given 6-9 months to live in June 2009....I have been NED for 3 years and 4 months.( My trial was 30 months total) I did have a 6.8 cent melanoma in my right paratracheal lymph node removed before starting the trial. My trial was for those recently surgically resected. I had scans, blood work and check up on July 12...I remain NED and move on to scans, blood work and check up now every 6 months! Lynn

  • Darron
    Darron Member Posts: 310 Member
    #13
    LynnLuc said:

    Nivolumab

    I have Stage 4 Melanoma and I did Nivolumab along with peptise injections at HL Moffitt,  I did them every other week for 24 weeks and then rec'd booster infusions of Nivolumab every 3 months for 2 years. I was given 6-9 months to live in June 2009....I have been NED for 3 years and 4 months.( My trial was 30 months total) I did have a 6.8 cent melanoma in my right paratracheal lymph node removed before starting the trial. My trial was for those recently surgically resected. I had scans, blood work and check up on July 12...I remain NED and move on to scans, blood work and check up now every 6 months! Lynn

    Lynnluc

    You are one of the trailblazers I want to thank. it is nice to put a name with the statistics I have been reading. I am the first at my Dr's office to have this much of a response. Even with my great results so far, it is difficult to clear my mind and start thinking beyond the next scan. Thanks for sharing, so happy to still have you around. Quick question, after infusions, do you have a mild fever later that day and get very tired? Just wondering.

  • LynnLuc
    LynnLuc Member Posts: 22
    #14
    Darron said:

    Lynnluc

    You are one of the trailblazers I want to thank. it is nice to put a name with the statistics I have been reading. I am the first at my Dr's office to have this much of a response. Even with my great results so far, it is difficult to clear my mind and start thinking beyond the next scan. Thanks for sharing, so happy to still have you around. Quick question, after infusions, do you have a mild fever later that day and get very tired? Just wondering.

    side effects

    Yes I got mild like flu symptoms ( in the beginning it came about one or two days later) but as the trial went on They came the same evening. As a matter of fact the last two I had gave me severe chills, a fever and chills so much so I shivered- and I was in Florida where it was HOT!) Tired...My last treatment was on April 5 and I have been tired  ever since I started the trial back in Fall 2010! Still tired. That is the one side effect most everyone complains about Dr. Weber says. We all get scanxiety...will always have it !  MY thyroid was fried sue to the Nivolumab but considering all things...it's nothing to complain about. I just take synthroid. That too can probably lend to the tiredness. I remember when I first started the trial no one heard about anti-pd-1 and they said vaccine trials don't work...now everyone is busting down the door to get it!! I am greatful!!  I know Merck had anti pd 1 as well...but I am convinced BMS works better!! Then again I am so bias!

    My trial also included peptide injections (72) given in my fat thighs...but it was the Nivolumab that did it.  I have website I started doing for melanoma people...www.survivingmelanoma.com.

    If you had a good initial response chances are it will continue to work so stay positive...and celebrate!

  • LynnLuc
    LynnLuc Member Posts: 22
    #15
    Darron said:

    Lynnluc

    You are one of the trailblazers I want to thank. it is nice to put a name with the statistics I have been reading. I am the first at my Dr's office to have this much of a response. Even with my great results so far, it is difficult to clear my mind and start thinking beyond the next scan. Thanks for sharing, so happy to still have you around. Quick question, after infusions, do you have a mild fever later that day and get very tired? Just wondering.

    side effects

    Yes I got mild like flu symptoms ( in the beginning it came about one or two days later) but as the trial went on They came the same evening. As a matter of fact the last two I had gave me severe chills, a fever and chills so much so I shivered- and I was in Florida where it was HOT!) Tired...My last treatment was on April 5 and I have been tired  ever since I started the trial back in Fall 2010! Still tired. That is the one side effect most everyone complains about Dr. Weber says. We all get scanxiety...will always have it !  MY thyroid was fried sue to the Nivolumab but considering all things...it's nothing to complain about. I just take synthroid. That too can probably lend to the tiredness. I remember when I first started the trial no one heard about anti-pd-1 and they said vaccine trials don't work...now everyone is busting down the door to get it!! I am greatful!!  I know Merck had anti pd 1 as well...but I am convinced BMS works better!! Then again I am so bias!

    My trial also included peptide injections (72) given in my fat thighs...but it was the Nivolumab that did it.  I have website I started doing for melanoma people...www.survivingmelanoma.com.

    If you had a good initial response chances are it will continue to work so stay positive...and celebrate!

  • Darron
    Darron Member Posts: 310 Member
    #16
    LynnLuc said:

    side effects

    Yes I got mild like flu symptoms ( in the beginning it came about one or two days later) but as the trial went on They came the same evening. As a matter of fact the last two I had gave me severe chills, a fever and chills so much so I shivered- and I was in Florida where it was HOT!) Tired...My last treatment was on April 5 and I have been tired  ever since I started the trial back in Fall 2010! Still tired. That is the one side effect most everyone complains about Dr. Weber says. We all get scanxiety...will always have it !  MY thyroid was fried sue to the Nivolumab but considering all things...it's nothing to complain about. I just take synthroid. That too can probably lend to the tiredness. I remember when I first started the trial no one heard about anti-pd-1 and they said vaccine trials don't work...now everyone is busting down the door to get it!! I am greatful!!  I know Merck had anti pd 1 as well...but I am convinced BMS works better!! Then again I am so bias!

    My trial also included peptide injections (72) given in my fat thighs...but it was the Nivolumab that did it.  I have website I started doing for melanoma people...www.survivingmelanoma.com.

    If you had a good initial response chances are it will continue to work so stay positive...and celebrate!

    Thanks Lynnluc!

    I appreciate the sharing. Interesting about the flu symptoms after the infusion. Now that you mentiounit, it started very mild and has increased every infusion. Two times ago, I was very tired and slept 4 hours. I have attributed it to being a long day of scans then infusion ( I get same day results). Last time I slept when I got home and had a mild fever before officially going to bed for the night. I have been fine when I wake up, and haven't missed work the next day.

    Thanks again!

  • Raine22
    Raine22 Member Posts: 33
    #17
    Darron said:

    Thanks Lynnluc!

    I appreciate the sharing. Interesting about the flu symptoms after the infusion. Now that you mentiounit, it started very mild and has increased every infusion. Two times ago, I was very tired and slept 4 hours. I have attributed it to being a long day of scans then infusion ( I get same day results). Last time I slept when I got home and had a mild fever before officially going to bed for the night. I have been fine when I wake up, and haven't missed work the next day.

    Thanks again!

    Adrenal

    Hey there!  I haven't been on the board for a while, but wanted to check/see how you were doing.   You and I are very similar.

    stage 3, grade 4, but mine was little, 9 cm 3/12.  Spot on one and only adrenal.  Had MRI Friday and go tomorrow for results..   Scared to death.

     

    tell me what you can.  50 y/0 white female.

     

    we've chatted before.  Any info will be helpful!

    thanks,

    lorraine in HoustonHouston

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