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update Chucks 12 week scans ( Nivolumab+Ipi phase 1 trial)

AprilandChuck
AprilandChuck Member Posts: 110

Hope everyone had a wonderful 4th!  Chuck had his 12 week scan Friday..small recap...Chuck was diagnosed with Kidney Cancer last July and restaged to stage 4 in November.. when  lession was found on his liver and biopsied.. in Jan and Feb he underwent HDIL2 ..which at the end ended up being no sustained response..Chuck has mrcc with some rhabdoid features at the margins..his Doctor worked quick to get him into the Nivolumab Ipi trial.because Chucks cancer was behaving extremely aggressively. ? He started the trial mid April He recieves 1 mg IPI and 3 Nivolumab. ? Or he did that part is over we are in the maintenance phase..he just recieves 3 Nivolumab now..his first scans 6 weeks ago were remarkable..in the fact that everything was showing significant shrinkage...so we were understandably nervous about these scans..the results are as follows...most of the mets in his lungs have resolved whats left is now in mm range where it had been measured in cm..his liver met is now to small to actually measure..his lymph nodes with the exception of one have stabilized or returned to mormal..one has shown growth but the Dr believes this may be reactive..his thyroid has been modestly affected by the treatment and he is now on a low dose of thyroid medication...he developed some mouth sores and some small blistering on his hands and feet which is not something that has been observed with this part of the trial..because they are below the skin! But that is manageable. ? Very manageable..we are hoping that his response is sustained..we will see..but we can not say loudly enough that these drugs need to be made available to more mrcc patients..the sooner the better.. the news for some of you that comes out of ACOR not from our dr specifically is that Bristol Myers Squib is going to be moving into phase 2 of the potion of the trial Chucks in fairly soon..hoping some of you make it into that one..also some smaller companies are testing an Anti PD 1 agent similar to Nivoumab..so it looks like a broader range of Mrcc patients will have access..hope this update finds you all well and winning the war one battle at atime! Hugggss

Comments

  • angec
    angec Member Posts: 924
    That is really great news! So

    That is really great news! So very glad to hear it!! Looking forward to these drugs being available very soon! Keep up the good results!!!  Thanks for sharing!

  • angec
    angec Member Posts: 924
    That is really great news! So

    That is really great news! So very glad to hear it!! Looking forward to these drugs being available very soon! Keep up the good results!!!  Thanks for sharing!

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

    That is really great news! So

    That is really great news! So very glad to hear it!! Looking forward to these drugs being available very soon! Keep up the good results!!!  Thanks for sharing!

    Congrats

    The "new" poster boy is in the house!

  • Darron
    Darron Member Posts: 310
    foxhd said:

    Congrats

    The "new" poster boy is in the house!

    Chuck's speedo shrinkage

    So let me see if I got This straight

    Fox has lobbied in an earlier post today for a nivolumab patient to wear a speedo.

    Alice previously has stated she wants to see shrinkage everywhere.

    I am just hoping he two posts are completely unrelated.

    It is wonderful to hear such good News today. Quick question, do the blisters/ bruises shos up between The pads on your feet?

    that would be similar to what I have (sutent-nivolumab trial). I can sense when I am overworking my feet and keep it from getting too bad by using udder cream and staying off my feet.

  • alice124
    alice124 Member Posts: 896
    Fantastic news  Chuck and

    Fantastic news  Chuck and April. Congratulations! Will click some stemware tonight in honor of more of the same.

     

     

     

     

  • alice124
    alice124 Member Posts: 896
    Darron said:

    Chuck's speedo shrinkage

    So let me see if I got This straight

    Fox has lobbied in an earlier post today for a nivolumab patient to wear a speedo.

    Alice previously has stated she wants to see shrinkage everywhere.

    I am just hoping he two posts are completely unrelated.

    It is wonderful to hear such good News today. Quick question, do the blisters/ bruises shos up between The pads on your feet?

    that would be similar to what I have (sutent-nivolumab trial). I can sense when I am overworking my feet and keep it from getting too bad by using udder cream and staying off my feet.

    Shrinkage

    I readily admit I want to see more TUMOR shrinkage, but if Chuck also SHRINKS the size of his SPEEDO, no complaints here!

     

    Darron--are you related to Gary?

  • DMike
    DMike Member Posts: 259
    Hooray!

    Great news! I'm very happy for you guys.

    --David

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

    Chuck's speedo shrinkage

    So let me see if I got This straight

    Fox has lobbied in an earlier post today for a nivolumab patient to wear a speedo.

    Alice previously has stated she wants to see shrinkage everywhere.

    I am just hoping he two posts are completely unrelated.

    It is wonderful to hear such good News today. Quick question, do the blisters/ bruises shos up between The pads on your feet?

    that would be similar to what I have (sutent-nivolumab trial). I can sense when I am overworking my feet and keep it from getting too bad by using udder cream and staying off my feet.

    Warped being

    Darron, you are being corrupted. Humor is for the sickos! It's a waste of time worrying. Gee, and you've only been here a month. Watch out for good natured people with compassion. They seem to have a special survival skill.

  • Darron
    Darron Member Posts: 310
    alice124 said:

    Shrinkage

    I readily admit I want to see more TUMOR shrinkage, but if Chuck also SHRINKS the size of his SPEEDO, no complaints here!

     

    Darron--are you related to Gary?

    A link Somewhere

    I don't think we are related, but it looks like our sense of humor is from the same family.

  • faithlou
    faithlou Member Posts: 41
    Great!

    Wonderful news!