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PD-1 and Brain Mets
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PD-1 and Brain Mets

› Forums › General Melanoma Community › PD-1 and Brain Mets

  • Post
    • July 15, 2014 at 1:54 am
    lbkimball
    Participant

       

      Hi there,

       

      This is my first post, although I've had stage IV melanoma for over a year. I have 30+ brain mets (mostly tiny lesions, but a couple of good sized tumors) and am starting PD-1 on Thursday. I was on Tafinlar and Mekinist for about 8 months, then that stopped working. I had gamma knife treatment in February, and my doctor put me back on a double dose of Tafinlar. Since then (Feb) my brain tumors have been shrinking but the other tumors in my body continue to grow and more are appearing. I tried one infusion of Yervoy but got very sick, so we decided I was a "failure", which allowed me to access PD-1.

      My question is, has anyone here had PD-1 treatment with brain mets? If so, what kind of results did you see? I will be stopping Tafinlar, and assume I'll receive more gamma knife treatments if my brain mets start to progress again. 

      Finally, I'm being treated at UCSF by Dr. Daud. 

      Thanks for any wisdom you might have for me!

      laura

      sjkimballs.blogspot.com (my cancer blog)

    Viewing 5 reply threads
    • Replies
        • July 15, 2014 at 2:15 am
        cherylobrien
        Participant

          Hi Laura,

          My husband was diagnosed with stage IV melanoma in his brain in May 2013.  He had a right,  temporal lobe craniotomy followed by radiation, then started  Yervoy and Leukine injections which he finished in September, but two more mets appeared, one was treated with radiation and the one he had surgically removed this May. Left temporal lobe craniotomy.  He just finished 15 days of whole brain radiation last Wed.  Today our scans revealed a new mass in his intestine.  Looks like he willbe starting MK-3474 in a couple of weeks.  (I think that is the same as PD-1?)

          I have the same question as you.  Has this new drug helped people with brain mets?  I read some posts of people having great results but I am not sure if it was in brain.  I did see studies done by Dr Daud.  We are seeing Dr Jason Luke at Dana Farber in Boston.

          This is my first time posting and I'm sorry I don't have answers for you.  I'm hoping for some feedback as well.  I wish you the best and lets hope this treatment works!  I will certainly let you know as soon as my husband starts his treatment.

          Cheryl

           

            • July 15, 2014 at 4:35 am
            lbkimball
            Participant

              Best of luck to your husband, Cheryl. I'd love to hear how his treatment goes. Please try to keep in touch. 

              I'll do the same, although my doctor says it often takes up to 2 months for PD-1 to really show if it's working. This is going to be a tough 2 months…

               

              • July 15, 2014 at 4:35 am
              lbkimball
              Participant

                Best of luck to your husband, Cheryl. I'd love to hear how his treatment goes. Please try to keep in touch. 

                I'll do the same, although my doctor says it often takes up to 2 months for PD-1 to really show if it's working. This is going to be a tough 2 months…

                 

                • July 15, 2014 at 4:35 am
                lbkimball
                Participant

                  Best of luck to your husband, Cheryl. I'd love to hear how his treatment goes. Please try to keep in touch. 

                  I'll do the same, although my doctor says it often takes up to 2 months for PD-1 to really show if it's working. This is going to be a tough 2 months…

                   

                • July 15, 2014 at 2:15 am
                cherylobrien
                Participant

                  Hi Laura,

                  My husband was diagnosed with stage IV melanoma in his brain in May 2013.  He had a right,  temporal lobe craniotomy followed by radiation, then started  Yervoy and Leukine injections which he finished in September, but two more mets appeared, one was treated with radiation and the one he had surgically removed this May. Left temporal lobe craniotomy.  He just finished 15 days of whole brain radiation last Wed.  Today our scans revealed a new mass in his intestine.  Looks like he willbe starting MK-3474 in a couple of weeks.  (I think that is the same as PD-1?)

                  I have the same question as you.  Has this new drug helped people with brain mets?  I read some posts of people having great results but I am not sure if it was in brain.  I did see studies done by Dr Daud.  We are seeing Dr Jason Luke at Dana Farber in Boston.

                  This is my first time posting and I'm sorry I don't have answers for you.  I'm hoping for some feedback as well.  I wish you the best and lets hope this treatment works!  I will certainly let you know as soon as my husband starts his treatment.

                  Cheryl

                   

                  • July 15, 2014 at 2:15 am
                  cherylobrien
                  Participant

                    Hi Laura,

                    My husband was diagnosed with stage IV melanoma in his brain in May 2013.  He had a right,  temporal lobe craniotomy followed by radiation, then started  Yervoy and Leukine injections which he finished in September, but two more mets appeared, one was treated with radiation and the one he had surgically removed this May. Left temporal lobe craniotomy.  He just finished 15 days of whole brain radiation last Wed.  Today our scans revealed a new mass in his intestine.  Looks like he willbe starting MK-3474 in a couple of weeks.  (I think that is the same as PD-1?)

                    I have the same question as you.  Has this new drug helped people with brain mets?  I read some posts of people having great results but I am not sure if it was in brain.  I did see studies done by Dr Daud.  We are seeing Dr Jason Luke at Dana Farber in Boston.

                    This is my first time posting and I'm sorry I don't have answers for you.  I'm hoping for some feedback as well.  I wish you the best and lets hope this treatment works!  I will certainly let you know as soon as my husband starts his treatment.

                    Cheryl

                     

                    • July 15, 2014 at 3:45 am
                    Bubbles
                    Participant

                      Dear Laura,

                      So sorry for all you are going through.  I know that must be crazy.  As a person who has completed an anti-PD1 trial…this is a question I try to address often.  I am post brain and lung mets.  If you do a brain met search on my blog you will find lots of additional treatment information.  However, this is one of my latest posts that specifically addresses anti-PD1 and the brain.  Perhaps it will help:

                      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html

                      I wish you my very best.  Celeste

                        • July 15, 2014 at 4:32 am
                        lbkimball
                        Participant

                          Thank you for the reply, Celeste. I have heard there is a lot of data showing that folks being treated with PD-1 do not develop brain mets (ever) but there are no hard studies at this point showing the benefits on brain mets. I know Yale is doing one now, but I'm not inclined to cross the country to do their study. You did make the information clear in terms of how it works, and why the brain/blood barrier should not be a problem. Thank you for that as well.

                          The good news is, one the Merck product is FDA approved, my doctor can supplement the PD-1 treatment with a BRAF inhibitor or whatever else he sees fit. During this expanded access program, there's very little room for options.

                          All my best,

                          laura

                          • July 15, 2014 at 10:23 am
                          Bubbles
                          Participant

                            Yes, Laura.  You are right on all your points.  The EAP is very limiting, though I am glad folks like you are at least getting access to anti-PD1. Since folks with brain mets have been excluded from studies for so long it is very difficult to get specific info.  Here are some comments that researchers have made about that situation that might interest you. 

                            http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/should-melanoma-brain-met-patients-be.html

                            Hang in there.  I've got all my fingers crossed for you.  C

                            • July 15, 2014 at 10:23 am
                            Bubbles
                            Participant

                              Yes, Laura.  You are right on all your points.  The EAP is very limiting, though I am glad folks like you are at least getting access to anti-PD1. Since folks with brain mets have been excluded from studies for so long it is very difficult to get specific info.  Here are some comments that researchers have made about that situation that might interest you. 

                              http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/should-melanoma-brain-met-patients-be.html

                              Hang in there.  I've got all my fingers crossed for you.  C

                              • July 15, 2014 at 10:23 am
                              Bubbles
                              Participant

                                Yes, Laura.  You are right on all your points.  The EAP is very limiting, though I am glad folks like you are at least getting access to anti-PD1. Since folks with brain mets have been excluded from studies for so long it is very difficult to get specific info.  Here are some comments that researchers have made about that situation that might interest you. 

                                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/should-melanoma-brain-met-patients-be.html

                                Hang in there.  I've got all my fingers crossed for you.  C

                                • July 15, 2014 at 4:32 am
                                lbkimball
                                Participant

                                  Thank you for the reply, Celeste. I have heard there is a lot of data showing that folks being treated with PD-1 do not develop brain mets (ever) but there are no hard studies at this point showing the benefits on brain mets. I know Yale is doing one now, but I'm not inclined to cross the country to do their study. You did make the information clear in terms of how it works, and why the brain/blood barrier should not be a problem. Thank you for that as well.

                                  The good news is, one the Merck product is FDA approved, my doctor can supplement the PD-1 treatment with a BRAF inhibitor or whatever else he sees fit. During this expanded access program, there's very little room for options.

                                  All my best,

                                  laura

                                  • July 15, 2014 at 4:32 am
                                  lbkimball
                                  Participant

                                    Thank you for the reply, Celeste. I have heard there is a lot of data showing that folks being treated with PD-1 do not develop brain mets (ever) but there are no hard studies at this point showing the benefits on brain mets. I know Yale is doing one now, but I'm not inclined to cross the country to do their study. You did make the information clear in terms of how it works, and why the brain/blood barrier should not be a problem. Thank you for that as well.

                                    The good news is, one the Merck product is FDA approved, my doctor can supplement the PD-1 treatment with a BRAF inhibitor or whatever else he sees fit. During this expanded access program, there's very little room for options.

                                    All my best,

                                    laura

                                  • July 15, 2014 at 3:45 am
                                  Bubbles
                                  Participant

                                    Dear Laura,

                                    So sorry for all you are going through.  I know that must be crazy.  As a person who has completed an anti-PD1 trial…this is a question I try to address often.  I am post brain and lung mets.  If you do a brain met search on my blog you will find lots of additional treatment information.  However, this is one of my latest posts that specifically addresses anti-PD1 and the brain.  Perhaps it will help:

                                    http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html

                                    I wish you my very best.  Celeste

                                    • July 15, 2014 at 3:45 am
                                    Bubbles
                                    Participant

                                      Dear Laura,

                                      So sorry for all you are going through.  I know that must be crazy.  As a person who has completed an anti-PD1 trial…this is a question I try to address often.  I am post brain and lung mets.  If you do a brain met search on my blog you will find lots of additional treatment information.  However, this is one of my latest posts that specifically addresses anti-PD1 and the brain.  Perhaps it will help:

                                      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html

                                      I wish you my very best.  Celeste

                                  Viewing 5 reply threads
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