Experience with radiation & immunotherapy
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Experience with radiation & immunotherapy

› Forums › Cutaneous Melanoma Community › Experience with radiation & immunotherapy

  • Post
    • January 21, 2016 at 8:22 pm
    Polymath
    Participant

    I have had a real tough case.  After initial treatment with Zelboraf, which worked temporarily, but delivered every single side-effect in the book, and some, it has been all downhill since.  Two years of following the standard of care with all the FDA approved drug therapies, and a clinical trial thrown in when FDA options were exhausted,  All unable to stop progression (perhaps some slowed it down) I finally was able to join the many on the Ipi/Nivo combo once it was FDA approved and am currently on it.  One of my issues is my tumors grow very large.  Internal, and subcutaneous typically grow to 8-9cm in size, and sub-q tumors this size can be painful, and definitely disfiguring as they bulge right clothing.  Last year I treated one large sub-q tumor on my back because it was causing so many problems and discomfort.  After a short,(5-times) but very powerful treatment regime, I remained frustrated at the slow pace of effectiveness.  It took about 10-weeks before I started to notice the tumor shrink, and after a couple more months the tumor was 90% smaller and no longer caused any problems.  Now while on immunotherapy I have had radiation again, on two large tumors near my clavicle, and may be benefiting from the so-called "triple threat" whereby radiation added to the Ipi/Nivo combo seems to have an added benefit to the effectiveness of the combo.

    So finally my question.  Right now the one easiest to measure sub-q tumor which was radiation treated has begun to shrink rather rapidly.  While I am thrilled that perhaps drug therapy is finally working, there's this little gnawing voice in me that says maybe this rapid shrinkage is a result of the radiation, rather than a systemic response to the drugs.  My radiation oncologist says that this rapid shrinking which started immediately after radiation treatment is unlikely to be from the radiation.  Its more likely these tumors would respond the same way as prior treatment and take months, before shrinking noticeably.  Anyone been in my shoes and can offer their experiences?

    Gary

     

Viewing 5 reply threads
  • Replies
      • January 22, 2016 at 1:27 am
      Bubbles
      Participant

      Hi Gary,

      Sorry you have had to deal with so much and very glad that things are finally looking up! While I did have SRS to a brain tumor prior to participation in a 2 1/2 year Nivo/Opdivo trial…with good effect…it's not quite the same as what you are dealing with and I don't know that I have any way of answering your question. But, there are many articles, researchers and patients who are showing more and more that the combination of immunotherapy and radiation is certainly a good thing.  Here's a recent post with an article (and links to more within) to that effect:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/why-immunotherapy-is-good-for-lots-of.html

      Don't know if that helps… Hang in there! Celeste

      • January 22, 2016 at 1:27 am
      Bubbles
      Participant

      Hi Gary,

      Sorry you have had to deal with so much and very glad that things are finally looking up! While I did have SRS to a brain tumor prior to participation in a 2 1/2 year Nivo/Opdivo trial…with good effect…it's not quite the same as what you are dealing with and I don't know that I have any way of answering your question. But, there are many articles, researchers and patients who are showing more and more that the combination of immunotherapy and radiation is certainly a good thing.  Here's a recent post with an article (and links to more within) to that effect:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/why-immunotherapy-is-good-for-lots-of.html

      Don't know if that helps… Hang in there! Celeste

      • January 22, 2016 at 1:27 am
      Bubbles
      Participant

      Hi Gary,

      Sorry you have had to deal with so much and very glad that things are finally looking up! While I did have SRS to a brain tumor prior to participation in a 2 1/2 year Nivo/Opdivo trial…with good effect…it's not quite the same as what you are dealing with and I don't know that I have any way of answering your question. But, there are many articles, researchers and patients who are showing more and more that the combination of immunotherapy and radiation is certainly a good thing.  Here's a recent post with an article (and links to more within) to that effect:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/why-immunotherapy-is-good-for-lots-of.html

      Don't know if that helps… Hang in there! Celeste

      • January 22, 2016 at 1:28 pm
      ed williams
      Participant

      Hi Gary, take some time to look up the Abscopal effect with radiation and Immunotherapy. There are some articles like Celeste gave you already and I believe that there might also be some clinical trials looking at this. I have heard several leading Oncologist talk about the abscopal effect while they were giving presentations, if I remember correctly there is a belief that the radiation might help the immune system to recognize the tumor and when taking the combination of Ipi and Nivo together with radiation might increase the tumor reaction. There is so much that is new with the various combinations being studied in Immunotherapy, it is hard to keep up with all the new choices. Wishing you the best!!!! Ed

      • January 22, 2016 at 1:28 pm
      ed williams
      Participant

      Hi Gary, take some time to look up the Abscopal effect with radiation and Immunotherapy. There are some articles like Celeste gave you already and I believe that there might also be some clinical trials looking at this. I have heard several leading Oncologist talk about the abscopal effect while they were giving presentations, if I remember correctly there is a belief that the radiation might help the immune system to recognize the tumor and when taking the combination of Ipi and Nivo together with radiation might increase the tumor reaction. There is so much that is new with the various combinations being studied in Immunotherapy, it is hard to keep up with all the new choices. Wishing you the best!!!! Ed

        • January 22, 2016 at 5:59 pm
        Polymath
        Participant

        Thanks Celeste & Ed, for responding.  Yes, I'm aware of the potential positive effects, and more importantly, I actually think its working which after more than two years of dissapointment, is indeed fantastic news.  I hope more people who may have radiation treatable tumors, while on immunotherapy try this.  But I think my actual question was vauge.  I am wondering if anyone who was treated with radiation, had different tumors respond very differently to identical treatment.  I am just trying to manage my expectations.  Most likely its the combo of therapies getting results, but I still worry a little that this particular tumor which is my monitor (in lieu of scans) may be faking me out.

        Thanks again, 

        Gary

        • January 22, 2016 at 5:59 pm
        Polymath
        Participant

        Thanks Celeste & Ed, for responding.  Yes, I'm aware of the potential positive effects, and more importantly, I actually think its working which after more than two years of dissapointment, is indeed fantastic news.  I hope more people who may have radiation treatable tumors, while on immunotherapy try this.  But I think my actual question was vauge.  I am wondering if anyone who was treated with radiation, had different tumors respond very differently to identical treatment.  I am just trying to manage my expectations.  Most likely its the combo of therapies getting results, but I still worry a little that this particular tumor which is my monitor (in lieu of scans) may be faking me out.

        Thanks again, 

        Gary

        • January 22, 2016 at 8:38 pm
        AllysonRuth
        Participant

        Hi Gary,

        I am in a similar situation to yours.  I have been treated with PD-1 (Keytruda) and radiation.  The doctor wanted to make sure that I was treated with both at the same time.  I have multiple tumors that were treated with radiation and immunotherapy.  Most of my tumors responded the same, a little bit of variation, but about the same amount of reduction.  I also had multiple tumors in my small intestine that were not radiated and still showed some tumor reduction, just not as much as the tumors that were radiated, but still some response to Keytruda.  So I can't say that I had different tumors that responded differently to the same treatment, rather they responded similarly.   I hope this helps!

        Good luck!

        Allyson

        • January 22, 2016 at 9:50 pm
        Polymath
        Participant

        Thanks Allyson,

        Yes, it helps and glad to hear you too are responding to treatment.  The similar tumor response is exactly what my radiation oncololgist said she would expect.  I think I need to go ahead and pinch myself and begin to accept I am finally responding to something. 

        Thanks again!

        Gary

        • January 23, 2016 at 4:18 pm
        AllysonRuth
        Participant

        Pinch away!   I hope you have a good day!  (FYI – I also did the 5 treatments of high dose radiation rather than having it being spread out over 7 weeks.)

        Wishing you the best!  I am going back to Mayo next week to get my next infusion, kicking Melanoma's #*@#!

        Allyson

        • January 23, 2016 at 4:18 pm
        AllysonRuth
        Participant

        Pinch away!   I hope you have a good day!  (FYI – I also did the 5 treatments of high dose radiation rather than having it being spread out over 7 weeks.)

        Wishing you the best!  I am going back to Mayo next week to get my next infusion, kicking Melanoma's #*@#!

        Allyson

        • January 23, 2016 at 4:18 pm
        AllysonRuth
        Participant

        Pinch away!   I hope you have a good day!  (FYI – I also did the 5 treatments of high dose radiation rather than having it being spread out over 7 weeks.)

        Wishing you the best!  I am going back to Mayo next week to get my next infusion, kicking Melanoma's #*@#!

        Allyson

        • January 22, 2016 at 9:50 pm
        Polymath
        Participant

        Thanks Allyson,

        Yes, it helps and glad to hear you too are responding to treatment.  The similar tumor response is exactly what my radiation oncololgist said she would expect.  I think I need to go ahead and pinch myself and begin to accept I am finally responding to something. 

        Thanks again!

        Gary

        • January 22, 2016 at 9:50 pm
        Polymath
        Participant

        Thanks Allyson,

        Yes, it helps and glad to hear you too are responding to treatment.  The similar tumor response is exactly what my radiation oncololgist said she would expect.  I think I need to go ahead and pinch myself and begin to accept I am finally responding to something. 

        Thanks again!

        Gary

        • January 23, 2016 at 3:54 pm
        chrisholder
        Participant

        Gary and AllysonRuth, and the others:   This are such interesting and complicated and, I think, ultimately hopeful stories!  And, Gary, I am afraid that adding mine may not assist you much, but the combination of these stories may give us all some hope today and maybe will offer future mm patients greater hope!   

        I was in the last Ipi/Nivo trial before the combo was appoved by the FDA, but had to drop out after only two infusions due to many hospitaizing side effects.   After recovered from that (btw, mine is in the right maxillary sinus – no mets yet), I began a course of Keytruda (Pembro, most of us call it), now five months into the infusions.  Both biopsies and scans showed clear cell death in the tumor area & no mets (thanks, Pembro!) but the tumor was still growing apace.  So Medical Oncologist decided to work with the Radiation Oncologist for all of the reasons everyone else who has posted here knows.  It's early yet – I'm only 3 weeks in to the 7 week course of radiation – but here's the thing: no scans or biopsies yet, of course, buy my rad. onc. says she has not seen (just with naked eye)  such an obvious visible shrinkage in such a short time before. And this is the first time they have had a case similar to mine combining Pembro w/ IMRT.   So…Hopeful?  I think so.   Helpful to everyone here?  I have no idea, but I hope adding the story to the mix will at least buoy us our positive outlooks!  Best to all, Chris

        • January 23, 2016 at 3:54 pm
        chrisholder
        Participant

        Gary and AllysonRuth, and the others:   This are such interesting and complicated and, I think, ultimately hopeful stories!  And, Gary, I am afraid that adding mine may not assist you much, but the combination of these stories may give us all some hope today and maybe will offer future mm patients greater hope!   

        I was in the last Ipi/Nivo trial before the combo was appoved by the FDA, but had to drop out after only two infusions due to many hospitaizing side effects.   After recovered from that (btw, mine is in the right maxillary sinus – no mets yet), I began a course of Keytruda (Pembro, most of us call it), now five months into the infusions.  Both biopsies and scans showed clear cell death in the tumor area & no mets (thanks, Pembro!) but the tumor was still growing apace.  So Medical Oncologist decided to work with the Radiation Oncologist for all of the reasons everyone else who has posted here knows.  It's early yet – I'm only 3 weeks in to the 7 week course of radiation – but here's the thing: no scans or biopsies yet, of course, buy my rad. onc. says she has not seen (just with naked eye)  such an obvious visible shrinkage in such a short time before. And this is the first time they have had a case similar to mine combining Pembro w/ IMRT.   So…Hopeful?  I think so.   Helpful to everyone here?  I have no idea, but I hope adding the story to the mix will at least buoy us our positive outlooks!  Best to all, Chris

        • January 23, 2016 at 3:54 pm
        chrisholder
        Participant

        Gary and AllysonRuth, and the others:   This are such interesting and complicated and, I think, ultimately hopeful stories!  And, Gary, I am afraid that adding mine may not assist you much, but the combination of these stories may give us all some hope today and maybe will offer future mm patients greater hope!   

        I was in the last Ipi/Nivo trial before the combo was appoved by the FDA, but had to drop out after only two infusions due to many hospitaizing side effects.   After recovered from that (btw, mine is in the right maxillary sinus – no mets yet), I began a course of Keytruda (Pembro, most of us call it), now five months into the infusions.  Both biopsies and scans showed clear cell death in the tumor area & no mets (thanks, Pembro!) but the tumor was still growing apace.  So Medical Oncologist decided to work with the Radiation Oncologist for all of the reasons everyone else who has posted here knows.  It's early yet – I'm only 3 weeks in to the 7 week course of radiation – but here's the thing: no scans or biopsies yet, of course, buy my rad. onc. says she has not seen (just with naked eye)  such an obvious visible shrinkage in such a short time before. And this is the first time they have had a case similar to mine combining Pembro w/ IMRT.   So…Hopeful?  I think so.   Helpful to everyone here?  I have no idea, but I hope adding the story to the mix will at least buoy us our positive outlooks!  Best to all, Chris

        • January 22, 2016 at 8:38 pm
        AllysonRuth
        Participant

        Hi Gary,

        I am in a similar situation to yours.  I have been treated with PD-1 (Keytruda) and radiation.  The doctor wanted to make sure that I was treated with both at the same time.  I have multiple tumors that were treated with radiation and immunotherapy.  Most of my tumors responded the same, a little bit of variation, but about the same amount of reduction.  I also had multiple tumors in my small intestine that were not radiated and still showed some tumor reduction, just not as much as the tumors that were radiated, but still some response to Keytruda.  So I can't say that I had different tumors that responded differently to the same treatment, rather they responded similarly.   I hope this helps!

        Good luck!

        Allyson

        • January 22, 2016 at 8:38 pm
        AllysonRuth
        Participant

        Hi Gary,

        I am in a similar situation to yours.  I have been treated with PD-1 (Keytruda) and radiation.  The doctor wanted to make sure that I was treated with both at the same time.  I have multiple tumors that were treated with radiation and immunotherapy.  Most of my tumors responded the same, a little bit of variation, but about the same amount of reduction.  I also had multiple tumors in my small intestine that were not radiated and still showed some tumor reduction, just not as much as the tumors that were radiated, but still some response to Keytruda.  So I can't say that I had different tumors that responded differently to the same treatment, rather they responded similarly.   I hope this helps!

        Good luck!

        Allyson

        • January 23, 2016 at 3:07 pm
        Bubbles
        Participant

        No problem, Gary. Unfortunately melanoma is a very weird beast and all therapies and combo's document complete, partial/mixed, and no responses…depending.  Not what any of us want to hear. Additiionally, especially when dealing immunotherapy (alone or in combination) responses can take some time. But as inconclusive as all that may be….  I think you and your current treatment plan have got melanoma on the run!! Fingers crossed, big hug, and my very heartfelt wishes that your current response continue until you are NED! C

        • January 23, 2016 at 3:07 pm
        Bubbles
        Participant

        No problem, Gary. Unfortunately melanoma is a very weird beast and all therapies and combo's document complete, partial/mixed, and no responses…depending.  Not what any of us want to hear. Additiionally, especially when dealing immunotherapy (alone or in combination) responses can take some time. But as inconclusive as all that may be….  I think you and your current treatment plan have got melanoma on the run!! Fingers crossed, big hug, and my very heartfelt wishes that your current response continue until you are NED! C

        • January 23, 2016 at 3:07 pm
        Bubbles
        Participant

        No problem, Gary. Unfortunately melanoma is a very weird beast and all therapies and combo's document complete, partial/mixed, and no responses…depending.  Not what any of us want to hear. Additiionally, especially when dealing immunotherapy (alone or in combination) responses can take some time. But as inconclusive as all that may be….  I think you and your current treatment plan have got melanoma on the run!! Fingers crossed, big hug, and my very heartfelt wishes that your current response continue until you are NED! C

        • January 22, 2016 at 5:59 pm
        Polymath
        Participant

        Thanks Celeste & Ed, for responding.  Yes, I'm aware of the potential positive effects, and more importantly, I actually think its working which after more than two years of dissapointment, is indeed fantastic news.  I hope more people who may have radiation treatable tumors, while on immunotherapy try this.  But I think my actual question was vauge.  I am wondering if anyone who was treated with radiation, had different tumors respond very differently to identical treatment.  I am just trying to manage my expectations.  Most likely its the combo of therapies getting results, but I still worry a little that this particular tumor which is my monitor (in lieu of scans) may be faking me out.

        Thanks again, 

        Gary

      • January 22, 2016 at 1:28 pm
      ed williams
      Participant

      Hi Gary, take some time to look up the Abscopal effect with radiation and Immunotherapy. There are some articles like Celeste gave you already and I believe that there might also be some clinical trials looking at this. I have heard several leading Oncologist talk about the abscopal effect while they were giving presentations, if I remember correctly there is a belief that the radiation might help the immune system to recognize the tumor and when taking the combination of Ipi and Nivo together with radiation might increase the tumor reaction. There is so much that is new with the various combinations being studied in Immunotherapy, it is hard to keep up with all the new choices. Wishing you the best!!!! Ed

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