Well, that didn’t work
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Well, that didn’t work

› Forums › General Melanoma Community › Well, that didn’t work

  • Post
    • June 18, 2016 at 7:08 pm
    ecc26
    Participant

    I haven't been able to post in quite a while again, for various reasong involving both work and treatment. I believe the last time I poted I had convinced the Melanoma department at Dana Farber in Boston to open a phase II trail for a CDK 4/5 drug that showed promise from phase I trials and was specifically targeting those with brain mets. I had to wait for my mets to be big enough for the trial, but did start the trial.

    Each cycle was 21 days of oral medications and I was supposed to be there on day 1 and again between days 14 and 21, but given travel distance they allowed me to combine those 2 appointments as scans happened at the later appointment and bloodwork, ect happened on the day 1 appointment. I started the trial, and just had what should have been the appointment to start cycle 3, but have been removed. 

    2 weeks ago I had a cluster of focal muscular seizures in my right hand/arm and lots of conultations ensued with the result being a low dose of steroids and starting an anti-seizure medication. At that point I had my suspicions that this trail wasn't going to work for me, but since the next round (which was to include additonal scans) was coming up I decided to wait to get some more results.

    Well, the results came in after the scans and as I suspected, I was removed from the trial. While my body showed stabiligy, there was some growth, including a new met in my brain. Additionally, it appeared that one of the older tumers (that had had some growth) had some bleeding, which was the likely cause of the seizures. I'm aware that Melanoma brain mets are notorious for bleeding, but with all my 40+ brain mets I've been lucky enough to never have experienced it before.

    Given all of that, my doctor in Boston was on the phone with my local oncologist before we even left the building, imaging discs and reports in hand.

    I had already discussed a few days before a "back-up" plan with my local oncologist that will involve a (hopefully) lower dose of the Ipi/PD-1 combo. The lower dose combo was somethng presented at a recent conference that showed results were just as good, but side effects were much lower than with the original combo. I'll also be making an appointment for a Gamma Knife to get to the brain mets before they get any worse and try to get off at least the steroids. I'm still a little skeptical that a combination of 2 drugs I've already failed will do anything, but we'll see- I have to do something.

    They're going to still keep looking for other trials (as will I) and mentioned a trial coming up also for those with brain mets, but it is not yet available. I can't remember exactly what the combo is, but it's a BRAF/MEK combined with one of the PD-L1 drugs. Not really even sure what phase- since it wasn't yet availalble we didn't spend much time on it.

    Things will progress starting Monday, when I get a chance to follow up with my other oncologists and start making plans/appointments, but in the mean time, I'm wondering if anyone here has or knows someone that has failed both Ipi and a PD-1, then gone on to try the combo with any success. Currently all the data is for people that are naive to at least one of the drugs, and only some anecdotal evidence of people who failed both individually then responded to the combo.

    Anything would help as I move forward with this plan.

    Thanks,

    Eva

Viewing 8 reply threads
  • Replies
      • June 18, 2016 at 8:04 pm
      Bubbles
      Participant

      Hey Eva,

      So sorry.  None of that sounds the least bit fun.  And you're right.  As best as I can find we have no definitive data on peeps who have taken anti-PD1 as well as ipi….gaining a response on the ipi/nivo combo.  BUT!!!  We do have some special peeps of our own.  Check out the responses by Mat and Gary here:  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/question-ipi-nivo-combo

      Hopefully, they will share their own stories with you.  And…just to show you a bit more hope….I recently posted this:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/brain-mets-in-melanoma-dont-wait-to-add.html

      Hopefully the addition of SRS/Gamma knife to the mix will help as well.  Hang in there.  Celeste

      • June 18, 2016 at 8:04 pm
      Bubbles
      Participant

      Hey Eva,

      So sorry.  None of that sounds the least bit fun.  And you're right.  As best as I can find we have no definitive data on peeps who have taken anti-PD1 as well as ipi….gaining a response on the ipi/nivo combo.  BUT!!!  We do have some special peeps of our own.  Check out the responses by Mat and Gary here:  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/question-ipi-nivo-combo

      Hopefully, they will share their own stories with you.  And…just to show you a bit more hope….I recently posted this:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/brain-mets-in-melanoma-dont-wait-to-add.html

      Hopefully the addition of SRS/Gamma knife to the mix will help as well.  Hang in there.  Celeste

      • June 18, 2016 at 8:04 pm
      Bubbles
      Participant

      Hey Eva,

      So sorry.  None of that sounds the least bit fun.  And you're right.  As best as I can find we have no definitive data on peeps who have taken anti-PD1 as well as ipi….gaining a response on the ipi/nivo combo.  BUT!!!  We do have some special peeps of our own.  Check out the responses by Mat and Gary here:  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/question-ipi-nivo-combo

      Hopefully, they will share their own stories with you.  And…just to show you a bit more hope….I recently posted this:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/brain-mets-in-melanoma-dont-wait-to-add.html

      Hopefully the addition of SRS/Gamma knife to the mix will help as well.  Hang in there.  Celeste

      • June 18, 2016 at 10:41 pm
      Polymath
      Participant

      Thanks Celeste, for pointing out prior posts.  Sorry, I think there's too much info in some.  Bottom line to Eva, is yes, I progressed on ipi, then we gave pembro a shot (about 7 infusions), and I continued to progress unabated.  I jumped in a trial that used IL-2 in an experimental way, and failed that too.  But then the ipi/nivo combo was approved at about that same time and it was deemed the next logical choice.  During the early stages of the combo I received radiation treatment to several large sub-q tumors.  On my next scan, the internal tumors which had remained stubborn began to shrink.  We feel that it's likely I have responded with the "abscopal effect", whereby tumors damaged by radiation, release antigens then spotted by the immune system and go on the attack.  Once they get a taste of the tumor material, they recognize and attack other tumors not treated by the radiation and the systemic response is achieved.  Despite my only partial response,  this was the first time in over three years any scan (and following scans) had ever shown any improvement.  So since you are considering the ipi/nivo, and plan for radiation as well.  I say the "hat trick" may very well be the way to go.  I'm quite certain others who were non-responders to single agents have also responded to the triple-play.  Best in the battle.

      Gary

       

      • June 18, 2016 at 10:41 pm
      Polymath
      Participant

      Thanks Celeste, for pointing out prior posts.  Sorry, I think there's too much info in some.  Bottom line to Eva, is yes, I progressed on ipi, then we gave pembro a shot (about 7 infusions), and I continued to progress unabated.  I jumped in a trial that used IL-2 in an experimental way, and failed that too.  But then the ipi/nivo combo was approved at about that same time and it was deemed the next logical choice.  During the early stages of the combo I received radiation treatment to several large sub-q tumors.  On my next scan, the internal tumors which had remained stubborn began to shrink.  We feel that it's likely I have responded with the "abscopal effect", whereby tumors damaged by radiation, release antigens then spotted by the immune system and go on the attack.  Once they get a taste of the tumor material, they recognize and attack other tumors not treated by the radiation and the systemic response is achieved.  Despite my only partial response,  this was the first time in over three years any scan (and following scans) had ever shown any improvement.  So since you are considering the ipi/nivo, and plan for radiation as well.  I say the "hat trick" may very well be the way to go.  I'm quite certain others who were non-responders to single agents have also responded to the triple-play.  Best in the battle.

      Gary

       

      • June 18, 2016 at 10:41 pm
      Polymath
      Participant

      Thanks Celeste, for pointing out prior posts.  Sorry, I think there's too much info in some.  Bottom line to Eva, is yes, I progressed on ipi, then we gave pembro a shot (about 7 infusions), and I continued to progress unabated.  I jumped in a trial that used IL-2 in an experimental way, and failed that too.  But then the ipi/nivo combo was approved at about that same time and it was deemed the next logical choice.  During the early stages of the combo I received radiation treatment to several large sub-q tumors.  On my next scan, the internal tumors which had remained stubborn began to shrink.  We feel that it's likely I have responded with the "abscopal effect", whereby tumors damaged by radiation, release antigens then spotted by the immune system and go on the attack.  Once they get a taste of the tumor material, they recognize and attack other tumors not treated by the radiation and the systemic response is achieved.  Despite my only partial response,  this was the first time in over three years any scan (and following scans) had ever shown any improvement.  So since you are considering the ipi/nivo, and plan for radiation as well.  I say the "hat trick" may very well be the way to go.  I'm quite certain others who were non-responders to single agents have also responded to the triple-play.  Best in the battle.

      Gary

       

      • June 19, 2016 at 9:44 am
      Mat
      Participant

      Eva, sorry to hear about the trial.  Yes, I failed ipi in 2014 and Keytruda in 2015–and now have about 6 months of stability (or maybe better) on the combo.  One additional thought–consider retreating with BRAF-MEK for few weeks before the combo (since you haven't had those drugs in a while).  It may help with the brain mets.  Also, I think the fact that you haven't had ipi for a while is a good fact for possible effectiveness of the combo.

      • June 19, 2016 at 9:44 am
      Mat
      Participant

      Eva, sorry to hear about the trial.  Yes, I failed ipi in 2014 and Keytruda in 2015–and now have about 6 months of stability (or maybe better) on the combo.  One additional thought–consider retreating with BRAF-MEK for few weeks before the combo (since you haven't had those drugs in a while).  It may help with the brain mets.  Also, I think the fact that you haven't had ipi for a while is a good fact for possible effectiveness of the combo.

      • June 19, 2016 at 9:44 am
      Mat
      Participant

      Eva, sorry to hear about the trial.  Yes, I failed ipi in 2014 and Keytruda in 2015–and now have about 6 months of stability (or maybe better) on the combo.  One additional thought–consider retreating with BRAF-MEK for few weeks before the combo (since you haven't had those drugs in a while).  It may help with the brain mets.  Also, I think the fact that you haven't had ipi for a while is a good fact for possible effectiveness of the combo.

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