BMS936558* Votrient trial (formerly MDX 1106) John's 18 week scan

alice124
alice124 Member Posts: 896 Member
in Kidney Cancer #1
John had his third CT scan on 9/12/12 since being on the MDX1106 (BMS936558)/Votrient trial. We received the RECIST (Response Evaluation Criteria In Solid Tumors) from the Radiologist this morning showing total shrinkage to date to be 46% (31% shrinkage first scan; 11% add’l. second scan; and 4% add’l. third scan). While we would have loved to see another double-digit reduction, we’re thankful it’s still moving in the right direction.
_____________________________________

John’s History at Johns Hopkins:

10/14/11 – Diagnosed with Kidney cancer clear cell/grade 4/stage 4 – with sarcomatoid features and lung mets; also has soft tissue mass in shoulder area and pelvic area.

Symptoms: weight loss followed by cough
11/1/11 – Surgery for removal of right kidney (nephrectomy)

Treatments to date:
January & February 2012 -HDIL2 treatment/first round 14 doses/2nd round 10 doses;
(discontinued after February 2012 as scan did not merit continuation)


5/10/2012 – Began MDX1106/Votrient trial BMS 936558
6/20/2012–CT scan showed 31% reduction in tumor burden;
8/1/2012–CT scan showed add'l 11% tumor reduction for total of 42%:
9/12/2012 – CT scan showed 46% reduction in tumor burden (4% addl.
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Comments

  • garym
    garym Member Posts: 1,647
    #2
    Very good news!!!
    Alice,

    That's 46% in only 4 months, even though it has slowed up a bit that's still wonderful progress, I am soooo happy for you both. I can't wait to see where you are by Christmas, this may be the best one ever for you, I believe it will be.

    Way to go,

    Gary
  • tacyarts
    tacyarts Member Posts: 73
    #3
    garym said:

    Very good news!!!
    Alice,

    That's 46% in only 4 months, even though it has slowed up a bit that's still wonderful progress, I am soooo happy for you both. I can't wait to see where you are by Christmas, this may be the best one ever for you, I believe it will be.

    Way to go,

    Gary

    Good news
    Still positive news, I'm sure that you would like a larger # of shrinkage but it is still positive news and still a victory!!! Way to go John!!
  • alice124
    alice124 Member Posts: 896 Member
    #4
    garym said:

    Very good news!!!
    Alice,

    That's 46% in only 4 months, even though it has slowed up a bit that's still wonderful progress, I am soooo happy for you both. I can't wait to see where you are by Christmas, this may be the best one ever for you, I believe it will be.

    Way to go,

    Gary

    NEWS
    Thanks Gary. Your cool outfit and your glass half full attitude make you a favorite in these parts!
  • alice124
    alice124 Member Posts: 896 Member
    #5
    tacyarts said:

    Good news
    Still positive news, I'm sure that you would like a larger # of shrinkage but it is still positive news and still a victory!!! Way to go John!!

    News
    Tacyarts,

    Yep we're still positive, but we're counting on your scan next week to pick up the slack John experienced on this scan. How's your leg? Crutches still necessary?
  • pjune127
    pjune127 Member Posts: 127
    #6
    Great news
    Alice this is excellent news. Enjoy it! I will be thrilled when I hear the words shrinkage or reduction in tumor burden. Just got back from Nashville. Anxiously await the affirmation that my tumor has the right receptors for PDL1, but was told there were other trials if I wasn't a match. Keep the faith, girl! I've been thinking about you and John and I get a good vibe!

    XO Paula
  • foxhd
    foxhd Member Posts: 3,181 Member
    #7
    alice124 said:

    NEWS
    Thanks Gary. Your cool outfit and your glass half full attitude make you a favorite in these parts!

    Love it !
    Great news Alice! Way to go John! All I want for Christmas is my MDX!
  • tacyarts
    tacyarts Member Posts: 73
    #8
    alice124 said:

    News
    Tacyarts,

    Yep we're still positive, but we're counting on your scan next week to pick up the slack John experienced on this scan. How's your leg? Crutches still necessary?

    Crutches
    Still dependent on crutches, but am excited for scans next week. Gotta get pain outta my leg, I haven't been able to work for 3 months now.
  • angec
    angec Member Posts: 924 Member
    #9
    AWESOME!!
    Alice that is AWESOME! So happy it is working. Things take time but it is going in the right direction!!!!
  • alice124
    alice124 Member Posts: 896 Member
    #10
    tacyarts said:

    Crutches
    Still dependent on crutches, but am excited for scans next week. Gotta get pain outta my leg, I haven't been able to work for 3 months now.

    Crutches - scan
    I'm excited with you. We're keeping everything crossed hoping to hear positive results.
  • alice124
    alice124 Member Posts: 896 Member
    #11
    pjune127 said:

    Great news
    Alice this is excellent news. Enjoy it! I will be thrilled when I hear the words shrinkage or reduction in tumor burden. Just got back from Nashville. Anxiously await the affirmation that my tumor has the right receptors for PDL1, but was told there were other trials if I wasn't a match. Keep the faith, girl! I've been thinking about you and John and I get a good vibe!

    XO Paula

    Thanks
    Paula and Fox (here we go again)-

    Thank you both for that soulnergy. May it go full circle on this board healing everyone it touches.

    Paula-when do you expect to hear results? Been thinking about you all day. Thumbs up!
  • alice124
    alice124 Member Posts: 896 Member
    #12
    angec said:

    AWESOME!!
    Alice that is AWESOME! So happy it is working. Things take time but it is going in the right direction!!!!

    18 week scan
    Thanks Ange. Keeping our fingers crossed; definitely right direction.
  • Limelife50
    Limelife50 Member Posts: 476
    #13
    alice124 said:

    18 week scan
    Thanks Ange. Keeping our fingers crossed; definitely right direction.

    Good going John
    Not to many things get me more excited than hearing about cancer tumors slowly dying off.Keep up the good work John and i hope the both of you are able to relax a little.P.S try to eat more pizza John or least foods high in carbs i would hope to hear in the near future you are over 200 pounds and maybe a little chubby.
  • alice124
    alice124 Member Posts: 896 Member
    #14
    Limelife50 said:

    Good going John
    Not to many things get me more excited than hearing about cancer tumors slowly dying off.Keep up the good work John and i hope the both of you are able to relax a little.P.S try to eat more pizza John or least foods high in carbs i would hope to hear in the near future you are over 200 pounds and maybe a little chubby.

    200 pounds
    Hey Mike - thanks for the good wishes. John is gaining some weight; he's up to 165. That is an improvement!
  • Limelife50
    Limelife50 Member Posts: 476
    #15
    alice124 said:

    200 pounds
    Hey Mike - thanks for the good wishes. John is gaining some weight; he's up to 165. That is an improvement!

    Hey Alice
    Dont forget i live in the Chicago area so anytime you desire a real awesome deep dish pizza fed exed to your house just give me a holler and consider it on its way.
  • strongmind
    strongmind Member Posts: 34
    #16
    alice124 said:

    200 pounds
    Hey Mike - thanks for the good wishes. John is gaining some weight; he's up to 165. That is an improvement!

    great!!
    That is wonderful news...keeping you in prayers..stay positive and strong!! best of luck.
  • alice124
    alice124 Member Posts: 896 Member
    #17
    Limelife50 said:

    Hey Alice
    Dont forget i live in the Chicago area so anytime you desire a real awesome deep dish pizza fed exed to your house just give me a holler and consider it on its way.

    Pizza
    You're a sweetheart Mike. Thank you for the kind offer!!!
  • alice124
    alice124 Member Posts: 896 Member
    #18
    strongmind said:

    great!!
    That is wonderful news...keeping you in prayers..stay positive and strong!! best of luck.

    Thank you
    Stongmind - We'll stay strong together. Thanks!
  • alice124
    alice124 Member Posts: 896 Member
    #19
    tacyarts said:

    Crutches
    Still dependent on crutches, but am excited for scans next week. Gotta get pain outta my leg, I haven't been able to work for 3 months now.

    Keeping the faith
    I know we're in countdown mode for your scan; but was wondering has the pain eased any?
  • tacyarts
    tacyarts Member Posts: 73
    #20
    alice124 said:

    Keeping the faith
    I know we're in countdown mode for your scan; but was wondering has the pain eased any?

    Pain
    The pain seems about the same, if not worse. I hope that I am wrong but I don't notice any relief.
  • alice124
    alice124 Member Posts: 896 Member
    #21
    24 Week Scan
    Hi all,

    Wish I had better news to report but I'm not complaining. John had his scan today and it showed stabilization, basically no additional shrinkage, but, more importantly, no growth.

    While he was awaiting his scan, his research nurse (the dear Monica) talked to him about Afinitor as a possible next step if his scan showed growth, but since it's stable, he will remain in trial. Next scan will be in 12 weeks. Will keep our fingers crossed for continued stabilization.

    ____________________________________

    John’s History at Johns Hopkins:

    10/14/11 – Diagnosed with Kidney cancer clear cell/grade 4/stage 4 – with sarcomatoid features and lung mets; also has soft tissue mass in shoulder area and pelvic area.

    Symptoms: weight loss followed by cough
    11/1/11 – Surgery for removal of right kidney (nephrectomy)

    Treatments to date:
    January & February 2012 -HDIL2 treatment/first round 14 doses/2nd round 10 doses;
    (discontinued after February 2012 as scan did not merit continuation)

    5/10/2012 – Began MDX1106/Votrient trial BMS 936558
    6/20/2012–CT scan showed 31% reduction in tumor burden;
    8/1/2012–CT scan showed add'l 11% tumor reduction for total of 42%:
    9/12/2012 – CT scan showed 46% reduction in tumor burden (4% addl.
    10/24/2012 - CT scan reflected stabiliztion

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