antiPD-1 scan results
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antiPD-1 scan results

› Forums › General Melanoma Community › antiPD-1 scan results

  • Post
    • August 27, 2013 at 8:54 pm
    Ali
    Participant

    So my 12 week scans after starting antiPD-1 were okay.  Only 9% tumor growth.  Some tumors had shrunk, some had grown.  One subcentimeter met had disappeared.  Unfortunately, much of the growth is in an axillary tumor that is starting to give me trouble (the back of my arm is numb, I get a shooting nerve pain with certain movements, and my inner arm is feeling bruised).  It looks like we will have to take care of it sooner than later, and of course we can't radiate or surgically remove it while I'm on the trial.  I am continuing on the trial till it has

    So my 12 week scans after starting antiPD-1 were okay.  Only 9% tumor growth.  Some tumors had shrunk, some had grown.  One subcentimeter met had disappeared.  Unfortunately, much of the growth is in an axillary tumor that is starting to give me trouble (the back of my arm is numb, I get a shooting nerve pain with certain movements, and my inner arm is feeling bruised).  It looks like we will have to take care of it sooner than later, and of course we can't radiate or surgically remove it while I'm on the trial.  I am continuing on the trial till it has to be dealt with (the Dr. says he has seen 2 people have 'late' responses to the drug, which would be a fun group to join).

    So.  I am weighing my options.  One of those is a TIL trial.  So far NIH won't take me for any of theirs, as I have a history of 25 brain mets.  Picky people. 🙂  I actually qualify for one at Moffitt that combines the ACT procedure with a BRAF inhibitor.  I would prefer not to go the BRAF route just yet (I am not anti-BRAF inhibitors, I just feel my immune system has more to give).  I am waiting for a response from Fred Hutchinson and MDAnderson who are recruiting for their TIL trials.  Any where else I should be looking into for that?

    I am not entirely sure that I want to do that next, but I'd like to know if it is an option.  I certainly would love to do it some time.  I am just wondering if I tried IPI again, would it produce great results again?  Especially because I have antiPD-1 in my system now?  Hmmm…. 

    I wondered if anyone has responded to immune therapies after taking the BRAF inhibitors.  Or have you heard of people responding?  The doctor says yes it happens, but I would love to see some examples.

    Thank you for any information/ideas.  Thank you for your good examples of how to gracefully navigate this disease (and beat it altogether!).

    Ali

Viewing 21 reply threads
  • Replies
      • August 28, 2013 at 12:27 am
      benp
      Participant

      Hi Ali, 

      I have had a good partial response to two immunotherapies (TIL, and currently PD-1) after taking Dabrafenib. I had good shrinkage with BRAF, though eventual progression which is the norm. I have read some opinions where they think BRAF before immunotherapy might be the best option, as it can rapidly debulk the disease if large tumors exist.

      All the best, 

      Ben.

      • August 28, 2013 at 12:27 am
      benp
      Participant

      Hi Ali, 

      I have had a good partial response to two immunotherapies (TIL, and currently PD-1) after taking Dabrafenib. I had good shrinkage with BRAF, though eventual progression which is the norm. I have read some opinions where they think BRAF before immunotherapy might be the best option, as it can rapidly debulk the disease if large tumors exist.

      All the best, 

      Ben.

      • August 28, 2013 at 12:27 am
      benp
      Participant

      Hi Ali, 

      I have had a good partial response to two immunotherapies (TIL, and currently PD-1) after taking Dabrafenib. I had good shrinkage with BRAF, though eventual progression which is the norm. I have read some opinions where they think BRAF before immunotherapy might be the best option, as it can rapidly debulk the disease if large tumors exist.

      All the best, 

      Ben.

      • August 28, 2013 at 1:31 am
      Ali
      Participant

      Thank you Ben!  Very encouraging.  Glad you have had many stories of success. 

      Ali

      • August 28, 2013 at 2:41 am
      Phil S
      Participant
      Ali, Good to see your post, and that you are getting some response to AntiPD1. I also totally understand you wanting to have options lined up for the future, you have put together a very strategic battle so far. I know you have saved BRAF and now MEK inhibitors are available to help, so that’s a good option for your arm tumor. I think TIL and BRAF is an interesting trial too. And, I think you would probably have a good second response to Ipi, since it helped the first time you took it and since your immune system is now primed with AntiPD1. We were on the floor of MDAnderson for many inpatient stays in 2012, and know people who did BRAF, then did immuno therapies with success. I know one person who did BRAF, then TIL, then went back on BRAF, then went on AntiPD1 trial and is doing well. I know another who did BRAF, then Yervoy/Ipi and is now stable. As you know, every story is different, but I think you have many viable options! My husband, Phil is BRAF negative, so we have fewer options, but he is still standing strong and stable, almost 16 months after TIL in Houston. All the best to you in your decision making, and continued fight! God bless, Valerie (Phil’s wife)
      • August 28, 2013 at 2:41 am
      Phil S
      Participant
      Ali, Good to see your post, and that you are getting some response to AntiPD1. I also totally understand you wanting to have options lined up for the future, you have put together a very strategic battle so far. I know you have saved BRAF and now MEK inhibitors are available to help, so that’s a good option for your arm tumor. I think TIL and BRAF is an interesting trial too. And, I think you would probably have a good second response to Ipi, since it helped the first time you took it and since your immune system is now primed with AntiPD1. We were on the floor of MDAnderson for many inpatient stays in 2012, and know people who did BRAF, then did immuno therapies with success. I know one person who did BRAF, then TIL, then went back on BRAF, then went on AntiPD1 trial and is doing well. I know another who did BRAF, then Yervoy/Ipi and is now stable. As you know, every story is different, but I think you have many viable options! My husband, Phil is BRAF negative, so we have fewer options, but he is still standing strong and stable, almost 16 months after TIL in Houston. All the best to you in your decision making, and continued fight! God bless, Valerie (Phil’s wife)
      • August 28, 2013 at 2:41 am
      Phil S
      Participant
      Ali, Good to see your post, and that you are getting some response to AntiPD1. I also totally understand you wanting to have options lined up for the future, you have put together a very strategic battle so far. I know you have saved BRAF and now MEK inhibitors are available to help, so that’s a good option for your arm tumor. I think TIL and BRAF is an interesting trial too. And, I think you would probably have a good second response to Ipi, since it helped the first time you took it and since your immune system is now primed with AntiPD1. We were on the floor of MDAnderson for many inpatient stays in 2012, and know people who did BRAF, then did immuno therapies with success. I know one person who did BRAF, then TIL, then went back on BRAF, then went on AntiPD1 trial and is doing well. I know another who did BRAF, then Yervoy/Ipi and is now stable. As you know, every story is different, but I think you have many viable options! My husband, Phil is BRAF negative, so we have fewer options, but he is still standing strong and stable, almost 16 months after TIL in Houston. All the best to you in your decision making, and continued fight! God bless, Valerie (Phil’s wife)
      • August 28, 2013 at 3:10 am
      Ali
      Participant

      Awesome Valerie!  Those are great examples.  I really appreciate you sharing them.  I think about you and Phil every time I think about TIL, I for sure want to try it.  16 months is awesome, hope it last forever!!!

      Ali

      • August 28, 2013 at 12:41 pm
      G-Samsa
      Participant
      Not sure I have too much to offer here because trials differ widely–but during my Ipi/anti-pd1 treatments some trouble I had with some bone mets was addressed with some precision radiation treatments. My Drs checked with the drug co. and got a green light on the additional procedure. I continue to get the immunotherapy –and the radiation has done a fairly good job of addressing the bone met issue. The Drs. also indicated that the radiation may have additional benefits, since it is suspected of helping to boost the effectiveness of the systemic immunotherapy treatment. Also, in discussing future strategies with my Drs. at MSKCC, they appear to hold a strong belief that reintroduction of Ipi in patients who have responded favorably will likely generate a renewed positive response. Hope this is useful.

        • August 28, 2013 at 1:31 am
        Ali
        Participant

        Thank you Ben!  Very encouraging.  Glad you have had many stories of success. 

        Ali

        • August 28, 2013 at 1:31 am
        Ali
        Participant

        Thank you Ben!  Very encouraging.  Glad you have had many stories of success. 

        Ali

      • August 28, 2013 at 12:41 pm
      G-Samsa
      Participant
      Not sure I have too much to offer here because trials differ widely–but during my Ipi/anti-pd1 treatments some trouble I had with some bone mets was addressed with some precision radiation treatments. My Drs checked with the drug co. and got a green light on the additional procedure. I continue to get the immunotherapy –and the radiation has done a fairly good job of addressing the bone met issue. The Drs. also indicated that the radiation may have additional benefits, since it is suspected of helping to boost the effectiveness of the systemic immunotherapy treatment. Also, in discussing future strategies with my Drs. at MSKCC, they appear to hold a strong belief that reintroduction of Ipi in patients who have responded favorably will likely generate a renewed positive response. Hope this is useful.

      • August 28, 2013 at 12:41 pm
      G-Samsa
      Participant
      Not sure I have too much to offer here because trials differ widely–but during my Ipi/anti-pd1 treatments some trouble I had with some bone mets was addressed with some precision radiation treatments. My Drs checked with the drug co. and got a green light on the additional procedure. I continue to get the immunotherapy –and the radiation has done a fairly good job of addressing the bone met issue. The Drs. also indicated that the radiation may have additional benefits, since it is suspected of helping to boost the effectiveness of the systemic immunotherapy treatment. Also, in discussing future strategies with my Drs. at MSKCC, they appear to hold a strong belief that reintroduction of Ipi in patients who have responded favorably will likely generate a renewed positive response. Hope this is useful.

      • August 28, 2013 at 4:02 pm
      Ali
      Participant

      Thank  you!  I asked if I could do radiation during the trial, but it was a no.  If only the drug were approved!  I am hoping that the reintroduction will do what it did last time, I am glad your doctors have seen that happen.  Thanks again for sharing!

      Ali

        • August 28, 2013 at 3:10 am
        Ali
        Participant

        Awesome Valerie!  Those are great examples.  I really appreciate you sharing them.  I think about you and Phil every time I think about TIL, I for sure want to try it.  16 months is awesome, hope it last forever!!!

        Ali

        • August 28, 2013 at 3:10 am
        Ali
        Participant

        Awesome Valerie!  Those are great examples.  I really appreciate you sharing them.  I think about you and Phil every time I think about TIL, I for sure want to try it.  16 months is awesome, hope it last forever!!!

        Ali

      • August 28, 2013 at 5:05 pm
      killmel
      Participant

      Hi,

       

      I am also on a PD1 trial. My last scans showed a tiny met in my brain. I woud liketo stay on the trial but I never knew that a drug company would let patients radiate tumors while on a trial.

      Which PD1 trial and drug company gaveyou permission to radiate your met?

       

      Thanks for taking the time to repy to my question. Continued success on the trial.

       

      Andrew

      • August 28, 2013 at 6:08 pm
      G-Samsa
      Participant
      I am in the BMS trial for the combined Ipi/Nivolumab. This was a small trial (52 patients) at MSKCC –I think it started in 2012.
      • August 28, 2013 at 6:35 pm
      killmel
      Participant

      Thanks G-Samsa,

      So am I understanding you correctly, BMS let you radiate the met and then continue on with the trial?

      This is such good news. Has anyone else been on a drug and had a met radiated yet was able to stay on the trial??

      If I get enough people that have had a met radiated yet was able to stay on the trial,I will ask my doctor about asking Merck for ppermission to radiate my tiny brain met.

      Thanks,

      Andrew

      • August 28, 2013 at 6:43 pm
      G-Samsa
      Participant
      Andrew–note that the radiation was applied to my leg and pelvis, and that brain mets were disqualifying for the original trial…
        • August 28, 2013 at 4:02 pm
        Ali
        Participant

        Thank  you!  I asked if I could do radiation during the trial, but it was a no.  If only the drug were approved!  I am hoping that the reintroduction will do what it did last time, I am glad your doctors have seen that happen.  Thanks again for sharing!

        Ali

        • August 28, 2013 at 4:02 pm
        Ali
        Participant

        Thank  you!  I asked if I could do radiation during the trial, but it was a no.  If only the drug were approved!  I am hoping that the reintroduction will do what it did last time, I am glad your doctors have seen that happen.  Thanks again for sharing!

        Ali

        • August 28, 2013 at 5:05 pm
        killmel
        Participant

        Hi,

         

        I am also on a PD1 trial. My last scans showed a tiny met in my brain. I woud liketo stay on the trial but I never knew that a drug company would let patients radiate tumors while on a trial.

        Which PD1 trial and drug company gaveyou permission to radiate your met?

         

        Thanks for taking the time to repy to my question. Continued success on the trial.

         

        Andrew

        • August 28, 2013 at 5:05 pm
        killmel
        Participant

        Hi,

         

        I am also on a PD1 trial. My last scans showed a tiny met in my brain. I woud liketo stay on the trial but I never knew that a drug company would let patients radiate tumors while on a trial.

        Which PD1 trial and drug company gaveyou permission to radiate your met?

         

        Thanks for taking the time to repy to my question. Continued success on the trial.

         

        Andrew

      • August 29, 2013 at 10:50 am
      aldakota22
      Participant

      In my prayers that you get the plan that is right on in your fight.Looks like you will have some options to choose from.All the best .Beat the beast .  Al

      • August 29, 2013 at 10:50 am
      aldakota22
      Participant

      In my prayers that you get the plan that is right on in your fight.Looks like you will have some options to choose from.All the best .Beat the beast .  Al

      • August 29, 2013 at 10:50 am
      aldakota22
      Participant

      In my prayers that you get the plan that is right on in your fight.Looks like you will have some options to choose from.All the best .Beat the beast .  Al

      • August 30, 2013 at 3:13 am
      BrianP
      Participant

      Ali,

      You may be interested in checking out this ADC trial.  One patient has been posting his experience here:

      http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242 

       

      It sounds very promising.  I don't think they have as stringent requirements on brain mets that some of the PD-1 trials have but don't quote me on that.

      Good luck,

      Brian

      • August 30, 2013 at 3:13 am
      BrianP
      Participant

      Ali,

      You may be interested in checking out this ADC trial.  One patient has been posting his experience here:

      http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242 

       

      It sounds very promising.  I don't think they have as stringent requirements on brain mets that some of the PD-1 trials have but don't quote me on that.

      Good luck,

      Brian

      • August 30, 2013 at 3:13 am
      BrianP
      Participant

      Ali,

      You may be interested in checking out this ADC trial.  One patient has been posting his experience here:

      http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242 

       

      It sounds very promising.  I don't think they have as stringent requirements on brain mets that some of the PD-1 trials have but don't quote me on that.

      Good luck,

      Brian

      • August 28, 2013 at 6:08 pm
      G-Samsa
      Participant
      I am in the BMS trial for the combined Ipi/Nivolumab. This was a small trial (52 patients) at MSKCC –I think it started in 2012.
      • August 28, 2013 at 6:08 pm
      G-Samsa
      Participant
      I am in the BMS trial for the combined Ipi/Nivolumab. This was a small trial (52 patients) at MSKCC –I think it started in 2012.
      • August 28, 2013 at 6:35 pm
      killmel
      Participant

      Thanks G-Samsa,

      So am I understanding you correctly, BMS let you radiate the met and then continue on with the trial?

      This is such good news. Has anyone else been on a drug and had a met radiated yet was able to stay on the trial??

      If I get enough people that have had a met radiated yet was able to stay on the trial,I will ask my doctor about asking Merck for ppermission to radiate my tiny brain met.

      Thanks,

      Andrew

      • August 28, 2013 at 6:35 pm
      killmel
      Participant

      Thanks G-Samsa,

      So am I understanding you correctly, BMS let you radiate the met and then continue on with the trial?

      This is such good news. Has anyone else been on a drug and had a met radiated yet was able to stay on the trial??

      If I get enough people that have had a met radiated yet was able to stay on the trial,I will ask my doctor about asking Merck for ppermission to radiate my tiny brain met.

      Thanks,

      Andrew

      • August 28, 2013 at 6:43 pm
      G-Samsa
      Participant
      Andrew–note that the radiation was applied to my leg and pelvis, and that brain mets were disqualifying for the original trial…
      • August 28, 2013 at 6:43 pm
      G-Samsa
      Participant
      Andrew–note that the radiation was applied to my leg and pelvis, and that brain mets were disqualifying for the original trial…
Viewing 21 reply threads
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