Update + Going for Anti PDL1 Trial

shamrocklady
shamrocklady Member Posts: 20
in Kidney Cancer #1

Hello Everyone!

My dad has been seeing Dr. Sznol at Yale. My Dads scans last week showed "moderate" growth on many of his lung mets, but no new lesions on any other organs including on the brain MRI. I take this as relatively good news. This was after an 8 week period of no treatment, awaiting a trial. Two oncologists gave my dad options for treatment vs wait. Both thought waiting would not hurt overall and would give us a chance to enter a trial for patients with no prior systemic treatment. We were discouraged from IL-2 as a first option due to my dad's cardiac history, but they said it's not completely off the table.

My dad is in the approval process for an anti PDL1 trial. One thing we need is a lung biopsy that still needs to be scheduled. The trial compares MPDL3280a or a combo of MPDL3280a with Avastin to Sutent. So there is 2/3 chance we will get MPDL3280a. If we end up in the Sutent group, and my dad has disease progression he would be allowed to cross over to the combo group (assuming he still meets criteria).  

I'm relieved to have a plan. Though we don't know for sure if we are in yet. I'm also nervous to see how my dad responds to treatment. 

 

Comments

  • Darron
    Darron Member Posts: 310 Member
    #2
    Go for it!

    Ito is an opportunity, I say go for it!

  • dancnbear1
    dancnbear1 Member Posts: 86
    #3
    I am in the nivolumab and

    I am in the nivolumab and ipilimimab trial which requires no previous treatments other than surgery. You may also want to look at that. Good luck

     

    db

  • GSRon
    GSRon Member Posts: 1,303 Member
    #4
    dancnbear1 said:

    I am in the nivolumab and

    I am in the nivolumab and ipilimimab trial which requires no previous treatments other than surgery. You may also want to look at that. Good luck

     

    db

    In case you missed my other

    In case you missed my other posting... you may wish to check out this video... pretty easy to understand most of it...

    http://www.scientificamerican.com/article/wolchok-video-who-knew-cancer-has-an-off-switch-video/?WT.mc_id=SA_SA_20140415=

    Ron

  • foxhd
    foxhd Member Posts: 3,181 Member
    #5
    GSRon said:

    In case you missed my other

    In case you missed my other posting... you may wish to check out this video... pretty easy to understand most of it...

    http://www.scientificamerican.com/article/wolchok-video-who-knew-cancer-has-an-off-switch-video/?WT.mc_id=SA_SA_20140415=

    Ron

    I'm glad

    you got your dad to Yale for treatment.

  • shamrocklady
    shamrocklady Member Posts: 20
    #6
    dancnbear1 said:

    I am in the nivolumab and

    I am in the nivolumab and ipilimimab trial which requires no previous treatments other than surgery. You may also want to look at that. Good luck

     

    db

    Hey DB,
    I originally was

    Hey DB,

    I originally was looking for a Nivo trial since hearing so many great stories and data from various sources. I did ask about Nivo trials to the oncologist, but there weren't any available to us at the time and now looking at the nivo + ipi trial you mention (if I am looking at the correct one) it sounds like it's not recruiting any new patients.

    Thus far the data on MPDL3280a show promise like Nivo, but with possibly fewer side effects. Since it targets the PD1 Ligand, it is suspected that it works best with tumors that express more PDL1. Of course we don't know upfront which patients have greater PDL1 expression. I think this trial is developing a technique to assess that, but we won't get that information back.

    I hope this trial offers enough for my dad to make it to the day when some of these immunotherapies, and possibly combos are approved for kidney cancer. From the opinions of two oncologists we saw, they believe Nivo could be approved within the next year for melanoma and even NSCLC, but a while longer for RCC. That seems frustrating! 

  • shamrocklady
    shamrocklady Member Posts: 20
    #7
    GSRon said:

    In case you missed my other

    In case you missed my other posting... you may wish to check out this video... pretty easy to understand most of it...

    http://www.scientificamerican.com/article/wolchok-video-who-knew-cancer-has-an-off-switch-video/?WT.mc_id=SA_SA_20140415=

    Ron

    Great Video!

    Ron-Nope, I hadn't seen video this yet. It was such a great overview of the field, the progress and most importantly the HOPE of immunotherapy, and will be great to show my dad. I've been doing overtime researching and learning about RCC. My dad only wants the Cliffs notes!

    Funny, I checked to see how recent this video/article was published and I was thinking May 1, 2014 VERY recent. Then I thought, wait it's not even May yet!

  • NanoSecond
    NanoSecond Member Posts: 653
    #8
    shamrocklady said:

    Hey DB,
    I originally was

    Hey DB,

    I originally was looking for a Nivo trial since hearing so many great stories and data from various sources. I did ask about Nivo trials to the oncologist, but there weren't any available to us at the time and now looking at the nivo + ipi trial you mention (if I am looking at the correct one) it sounds like it's not recruiting any new patients.

    Thus far the data on MPDL3280a show promise like Nivo, but with possibly fewer side effects. Since it targets the PD1 Ligand, it is suspected that it works best with tumors that express more PDL1. Of course we don't know upfront which patients have greater PDL1 expression. I think this trial is developing a technique to assess that, but we won't get that information back.

    I hope this trial offers enough for my dad to make it to the day when some of these immunotherapies, and possibly combos are approved for kidney cancer. From the opinions of two oncologists we saw, they believe Nivo could be approved within the next year for melanoma and even NSCLC, but a while longer for RCC. That seems frustrating! 

    Immune Therapies

    I think you are correct about the Nivo+Ipi trials being closed to mRCC patients.  In fact BMS (Bristol-Myers Squibb, the manufacturer of both of these drugs) is pretty much excluding RCC patients from many of their new trials these days.

    But the good news is that BMS now has lots of competitors (with even more on the way).  These other companies are still recruiting renal cancer patients so just keep looking.

    I was very fortunate to be admitted into an anti-PDL1 clinical trial of a drug made by EMD Serono.  This is the American-based arm of Merck.

    I only started earlier this month but I have had two infusions so far. It is too early to say how well (or if) it is working but I am quite optimistic that it is.

    Any immune-based clinical trial is well worth the effort to get into.  These drugs - or some combination of them - represent the future for all of us.

    Finally, although Nivo may not be approved for renal cancer if it is approved for any other kind of cancer you will still be able to obtain it off-label.  So lets hope it happens sooner than later.

  • GSRon
    GSRon Member Posts: 1,303 Member
    #9
    NanoSecond said:

    Immune Therapies

    I think you are correct about the Nivo+Ipi trials being closed to mRCC patients.  In fact BMS (Bristol-Myers Squibb, the manufacturer of both of these drugs) is pretty much excluding RCC patients from many of their new trials these days.

    But the good news is that BMS now has lots of competitors (with even more on the way).  These other companies are still recruiting renal cancer patients so just keep looking.

    I was very fortunate to be admitted into an anti-PDL1 clinical trial of a drug made by EMD Serono.  This is the American-based arm of Merck.

    I only started earlier this month but I have had two infusions so far. It is too early to say how well (or if) it is working but I am quite optimistic that it is.

    Any immune-based clinical trial is well worth the effort to get into.  These drugs - or some combination of them - represent the future for all of us.

    Finally, although Nivo may not be approved for renal cancer if it is approved for any other kind of cancer you will still be able to obtain it off-label.  So lets hope it happens sooner than later.

    Yes, those quirky

    Yes, those quirky scientists.. predicting the future again..!  I take it this is the May issue.. but at least we know it is recent... funny...  I posted that link in a bunch of spots..  My take is that this is one of the best videos out there right now...  Easy to understand and timely for sure..!!  I am betting that Neil gets good results...

    Ron

  • thaxter
    thaxter Member Posts: 124
    #10
    shamrocklady said:

    Hey DB,
    I originally was

    Hey DB,

    I originally was looking for a Nivo trial since hearing so many great stories and data from various sources. I did ask about Nivo trials to the oncologist, but there weren't any available to us at the time and now looking at the nivo + ipi trial you mention (if I am looking at the correct one) it sounds like it's not recruiting any new patients.

    Thus far the data on MPDL3280a show promise like Nivo, but with possibly fewer side effects. Since it targets the PD1 Ligand, it is suspected that it works best with tumors that express more PDL1. Of course we don't know upfront which patients have greater PDL1 expression. I think this trial is developing a technique to assess that, but we won't get that information back.

    I hope this trial offers enough for my dad to make it to the day when some of these immunotherapies, and possibly combos are approved for kidney cancer. From the opinions of two oncologists we saw, they believe Nivo could be approved within the next year for melanoma and even NSCLC, but a while longer for RCC. That seems frustrating! 

    My doctor thought Nivo might be approved for rcc this year

    When I asked about Nivo being approved next year, he said he thought it might be even earlier than that.

  • shamrocklady
    shamrocklady Member Posts: 20
    #11
    We are in!

    Today my father was accepted into the trial and randomized to the MPDL3280a group. He starts infusion tomorrow. Nervous but excited to finally begin.

    MPDL3280a definitely shows some good results with PLD1 postive tumors. Genentech the company conducting the trial has proprietary tests to determine PDL1 expression, but we never get to know the results. Bummer.

    I am happy to have my dad start in this group since prior trials show it to be better tolerated/fewer side effects and may offer some real hope in a small portion of patients.  If my dad's disease progresses in this group he may have the option to move to the MPDL3280a + Avastin (bevacizumab) combo group.

    I'll keep updates with my dad's response to MPDL3280.... Fingers crossed!

  • shamrocklady
    shamrocklady Member Posts: 20
    #12
    thaxter said:

    My doctor thought Nivo might be approved for rcc this year

    When I asked about Nivo being approved next year, he said he thought it might be even earlier than that.

    I hope this is the case!

    Hi Thaxter,

    Didn't see your comment until now. I do hope you are right about the Nivo coming out sooner rather than later. So many great drugs for RCC seem to be on the horizon, just not always easy to get your hands on the right treatment! :)

  • NanoSecond
    NanoSecond Member Posts: 653
    #13
    shamrocklady said:

    We are in!

    Today my father was accepted into the trial and randomized to the MPDL3280a group. He starts infusion tomorrow. Nervous but excited to finally begin.

    MPDL3280a definitely shows some good results with PLD1 postive tumors. Genentech the company conducting the trial has proprietary tests to determine PDL1 expression, but we never get to know the results. Bummer.

    I am happy to have my dad start in this group since prior trials show it to be better tolerated/fewer side effects and may offer some real hope in a small portion of patients.  If my dad's disease progresses in this group he may have the option to move to the MPDL3280a + Avastin (bevacizumab) combo group.

    I'll keep updates with my dad's response to MPDL3280.... Fingers crossed!

    PDL1

    Shamrock.  Although it is true that tumors expressing PDL1 will generally respond better than those that are negative it is not quite so straightforward.  Many negative PDL1 tumors have been shown to respond as well.  The speculation is that the anti-PDL1 drug may help turn those negative expressing tumors positive.  So don't worry.

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