Our Christmas Gift

alice124
alice124 Member Posts: 896 Member

As most of  you know, my husband, John (oneputt), has been on the nivolumab/votrient trial at Hopkins for over two years now. During the first year of the trial, he basically achieved 56% tumor reduction, followed by a year plus of stability. The trial requires CT scans every 12 weeks which are read by Hopkins and then by the pharmaceutical company sponsoring the trial. Until three months ago, the two scans mirrored the results of each other. But three months ago, it didn’t happen like that. The Hopkins scan reported stability but  the RECIST* report indicated  6% growth.  That, of course, was concerning as the trial only allows for 20% growth before being booted, plus this was the first time in over two years there was new growth.

So waiting for the next Hopkins scan scheduled for December 11  was tough and filled with angst. But when the Hopkins' results did come in they showed  stability—YES!  Now we had to see what the RECIST report would say; it usually comes in a week to 10 days after the Hopkins results.  For those 10 days we held our breath. We prayed the RECIST would mirror the Hopkins stability report and not show additional growth. But that didn't happen.  . .

It showed 5% shrinkage. What a Christmas present! We are thrilled!  Hope our good fortune this holiday season is replicated by all of you.

 

 _______________________________

FYI on scan confusion – Hopkins vs. RECIST as explained to  me by Dmike (David). The scan confusion deals with how RECIST measures tumors. Hopkins scan results reflect growth from the baseline. The RECIST uses growth from the smallest tumor size since being on the trial.

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    Sounds good to me.

    May all of your Christmas' be Merry.

     

    Icemantoo

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Alice, that is fabulous news!

    Alice, that is fabulous news! What a Christmas present. May this kind of good news continue to spread.

    Big hugs,

    Jojo

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    Jojo61 said:

    Alice, that is fabulous news!

    Alice, that is fabulous news! What a Christmas present. May this kind of good news continue to spread.

    Big hugs,

    Jojo

    WOWEEEEE!!!!
    Great to hear

    WOWEEEEE!!!!

    Great to hear some GOOD news for a change, right?

    Thanks for sharing your news!

    We're here for you, no matter what.

    Hugs, Jan

  • rae_rae
    rae_rae Member Posts: 300 Member
    Jan4you said:

    WOWEEEEE!!!!
    Great to hear

    WOWEEEEE!!!!

    Great to hear some GOOD news for a change, right?

    Thanks for sharing your news!

    We're here for you, no matter what.

    Hugs, Jan

    A great gift

    So Happy to hear the news - this is indeed a wonderful Christmas gift! Best to you in 2015!

    God Bless,

    Rae

  • sblairc
    sblairc Member Posts: 585 Member
    What an amazing gift.

    You are truly blessed! What a wonderful gift for you and your family. 56% tumor reduction and continued stability is amazing. 

  • angec
    angec Member Posts: 924 Member
    Whoo, hoo! I was praying that

    Whoo, hoo! I was praying that all would be good. It just didn't make sense to me otherwise!  YEAH BABY!  Tell John I am so very happy that all is a go on the trial.  Now you can relax after a tense and awful waiting period. Have a great new year ahead! Hugs!  XXOO

  • foxhd
    foxhd Member Posts: 3,181 Member
    angec said:

    Whoo, hoo! I was praying that

    Whoo, hoo! I was praying that all would be good. It just didn't make sense to me otherwise!  YEAH BABY!  Tell John I am so very happy that all is a go on the trial.  Now you can relax after a tense and awful waiting period. Have a great new year ahead! Hugs!  XXOO

    Nice Alice

    Boy, John has come a long way. It's the golf I tell you. It is nice not to need a mulligan. Keep it up John. Let's hear it for clinical trials!

  • brea588
    brea588 Member Posts: 240
    that is

    That is wonderful news.  What a Christmas present !!  Praying for you!

  • danbren2
    danbren2 Member Posts: 311
    Happy New Year indeed Alice and John!

    How wonderful for you both! Hoping this year will continue with only good results for us all!

                    Love and prayers for good health!

                    Brenda

  • Limelife50
    Limelife50 Member Posts: 476
    Nice

    Glad to hear the geat news great way to kick off the New Year.

     

     

  • alice124
    alice124 Member Posts: 896 Member
    Thank you all for your kind

    Thank you all for your kind words and support. When I think back to October 2011 (the time he was first diagnosed), this seems nothing short of a miracle.

    We also are thrilled with  the recent news that Nivolumab/Opdivo has now been FDA approved for Melanoma and thereby more getatable for RCC patients.  We hope all here, that may be able to benefit from it,  may find it attainable very, very soon.

  • AprilandChuck
    AprilandChuck Member Posts: 110
    alice124 said:

    Thank you all for your kind

    Thank you all for your kind words and support. When I think back to October 2011 (the time he was first diagnosed), this seems nothing short of a miracle.

    We also are thrilled with  the recent news that Nivolumab/Opdivo has now been FDA approved for Melanoma and thereby more getatable for RCC patients.  We hope all here, that may be able to benefit from it,  may find it attainable very, very soon.

    :D:D:D:D::D:D:D:D

    Such good news for such wonderful people :D I was very glad I had a minute to check the site this morning and saw this first off :D Hugggss Love and Continued well wishes and positive thoughts to you both!!

  • donna_lee
    donna_lee Member Posts: 1,041 Member

    :D:D:D:D::D:D:D:D

    Such good news for such wonderful people :D I was very glad I had a minute to check the site this morning and saw this first off :D Hugggss Love and Continued well wishes and positive thoughts to you both!!

    The smile

    on your photo says it all.  You've earned it, the hard way.

    Donna