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If keytruda is working will you most likely have years to live?

Forums General Melanoma Community If keytruda is working will you most likely have years to live?

  • Post
    Momofjake
    Participant

      Hi,

      my son jake, 18, had his scans yesterday. He has been on keytruda for 3 months now. He looks amazing! All visible tumors are gone. He has a heavy tumor load w 20 in his liver and also lungs. Plus many in his spine, ribs, femurs, muscles etc. the new scan showed many bone mets gone. His spine only had 2 left. His ribs are almost clean, femurs too. His lungs and liver have stable mets with less activity. He did get one new tumor in his chest. 

      My question is, does this mean Jake has years to live now? I mean he has no side effects to speak of. He plays tennis everyday and is a very healthy kid–other than stage 4 Mel!! 

      Anyway, Jake is truly my miracle. I hear in my mind daily, "I answered your prayers". No matter what happens from here I feel so grateful! Jake is back to his life! 18 is a great time to live. 

      Thanks,

      kerri-mom of Jake

    Viewing 14 reply threads
    • Replies
        ed williams
        Participant

          Hi Kerri, such great news about your son!!!!  How long Pd-1 drugs will work is a great question, the data from many of the trials is still being accumulated. The hope is that there will be a change to the immune system ,kind of like when we get immunization shots as a child. I listened to a pod cast by Dr. Jim Allison of M.D. Anderson on youtube, the title is "Immunotherapy: Unleashing immune system to attack Cancer."  It is about 30 min long and it features Dr. Pam Sharma and Dr.Jim Allison, 2 leading Melanoma Oncologists. Again, great to hear the great news about your son!!! Ed

          ed williams
          Participant

            Hi Kerri, such great news about your son!!!!  How long Pd-1 drugs will work is a great question, the data from many of the trials is still being accumulated. The hope is that there will be a change to the immune system ,kind of like when we get immunization shots as a child. I listened to a pod cast by Dr. Jim Allison of M.D. Anderson on youtube, the title is "Immunotherapy: Unleashing immune system to attack Cancer."  It is about 30 min long and it features Dr. Pam Sharma and Dr.Jim Allison, 2 leading Melanoma Oncologists. Again, great to hear the great news about your son!!! Ed

            ed williams
            Participant

              Hi Kerri, such great news about your son!!!!  How long Pd-1 drugs will work is a great question, the data from many of the trials is still being accumulated. The hope is that there will be a change to the immune system ,kind of like when we get immunization shots as a child. I listened to a pod cast by Dr. Jim Allison of M.D. Anderson on youtube, the title is "Immunotherapy: Unleashing immune system to attack Cancer."  It is about 30 min long and it features Dr. Pam Sharma and Dr.Jim Allison, 2 leading Melanoma Oncologists. Again, great to hear the great news about your son!!! Ed

              mrsaxde
              Participant

                Hi Kerri,

                You shared a bit of your son's story on my post about my most recent scan, and what Keytruda is doing for me. I'm so glad that things are going well for him.

                The thing that I find most encouraging is that, unlike Yervoy (if I remember right) where the responses of all those who were partial repsonders had an endpoint that was only a matter of months from the end of treatment, responses to Keytruda were ongoing in some patients many months later, and had not yet reached an endpoint.

                Dr. Sharfman at Johns Hopkins told me last year, shortly after Keytruda had been approved, that he feels the PD1's offer the most promise for durable responses. My local oncologist, Dr. Melnyk, who has been involved in melanoma research in the past, told me that she thinks Keytruda may turn out to be the "miracle drug" that can actually cure some people of melanoma. We are fortunate to be living in, and receiving treatment in, these exciting times where it seems that progress against this disease is being made literally every day!

                All my best to you and your son.

                -Bill

                mrsaxde
                Participant

                  Hi Kerri,

                  You shared a bit of your son's story on my post about my most recent scan, and what Keytruda is doing for me. I'm so glad that things are going well for him.

                  The thing that I find most encouraging is that, unlike Yervoy (if I remember right) where the responses of all those who were partial repsonders had an endpoint that was only a matter of months from the end of treatment, responses to Keytruda were ongoing in some patients many months later, and had not yet reached an endpoint.

                  Dr. Sharfman at Johns Hopkins told me last year, shortly after Keytruda had been approved, that he feels the PD1's offer the most promise for durable responses. My local oncologist, Dr. Melnyk, who has been involved in melanoma research in the past, told me that she thinks Keytruda may turn out to be the "miracle drug" that can actually cure some people of melanoma. We are fortunate to be living in, and receiving treatment in, these exciting times where it seems that progress against this disease is being made literally every day!

                  All my best to you and your son.

                  -Bill

                  mrsaxde
                  Participant

                    Hi Kerri,

                    You shared a bit of your son's story on my post about my most recent scan, and what Keytruda is doing for me. I'm so glad that things are going well for him.

                    The thing that I find most encouraging is that, unlike Yervoy (if I remember right) where the responses of all those who were partial repsonders had an endpoint that was only a matter of months from the end of treatment, responses to Keytruda were ongoing in some patients many months later, and had not yet reached an endpoint.

                    Dr. Sharfman at Johns Hopkins told me last year, shortly after Keytruda had been approved, that he feels the PD1's offer the most promise for durable responses. My local oncologist, Dr. Melnyk, who has been involved in melanoma research in the past, told me that she thinks Keytruda may turn out to be the "miracle drug" that can actually cure some people of melanoma. We are fortunate to be living in, and receiving treatment in, these exciting times where it seems that progress against this disease is being made literally every day!

                    All my best to you and your son.

                    -Bill

                    BrianP
                    Participant

                      Kerri,

                      That is such awesome news on Jake.  My heart goes out for what you've been through.  Through my whole ordeal I have said repeatedly, "thank God it's me dealing with something like this and not my kids." 

                      The durability question is one many of us have.  The main reason we just don't know the answers yet is because the drug hasn't been around long enough.  I think we do have reason to be optimistic.  I had a consult with Dr. Weber from Moffitt a couple months ago.  He informed me that on his first nivo trial the 15 patients that responded well are still going strong.  I think they are about 3 to 4 years since finishing their treatments.  None of them have had a recurrence since stopping treatment.  I think another thing you can look at and have optimism is the survival curve for Ipi.  The survival curve gets amazingly flat at the two year mark meaning that if a patients makes it to two years they are can just about be assured that melanoma isn't going to get them.  Those curves go out 10+ years now.  I think it's not unreasoable to expect the survival curve of the Anti-Pd1s to be just as good if not better than Ipi.

                      Best of luck to you guys.  I'm so glad Jake is back to enjoying life as an 18 year old and not a cancer patient.

                      Brian

                       

                      BrianP
                      Participant

                        Kerri,

                        That is such awesome news on Jake.  My heart goes out for what you've been through.  Through my whole ordeal I have said repeatedly, "thank God it's me dealing with something like this and not my kids." 

                        The durability question is one many of us have.  The main reason we just don't know the answers yet is because the drug hasn't been around long enough.  I think we do have reason to be optimistic.  I had a consult with Dr. Weber from Moffitt a couple months ago.  He informed me that on his first nivo trial the 15 patients that responded well are still going strong.  I think they are about 3 to 4 years since finishing their treatments.  None of them have had a recurrence since stopping treatment.  I think another thing you can look at and have optimism is the survival curve for Ipi.  The survival curve gets amazingly flat at the two year mark meaning that if a patients makes it to two years they are can just about be assured that melanoma isn't going to get them.  Those curves go out 10+ years now.  I think it's not unreasoable to expect the survival curve of the Anti-Pd1s to be just as good if not better than Ipi.

                        Best of luck to you guys.  I'm so glad Jake is back to enjoying life as an 18 year old and not a cancer patient.

                        Brian

                         

                        BrianP
                        Participant

                          Kerri,

                          That is such awesome news on Jake.  My heart goes out for what you've been through.  Through my whole ordeal I have said repeatedly, "thank God it's me dealing with something like this and not my kids." 

                          The durability question is one many of us have.  The main reason we just don't know the answers yet is because the drug hasn't been around long enough.  I think we do have reason to be optimistic.  I had a consult with Dr. Weber from Moffitt a couple months ago.  He informed me that on his first nivo trial the 15 patients that responded well are still going strong.  I think they are about 3 to 4 years since finishing their treatments.  None of them have had a recurrence since stopping treatment.  I think another thing you can look at and have optimism is the survival curve for Ipi.  The survival curve gets amazingly flat at the two year mark meaning that if a patients makes it to two years they are can just about be assured that melanoma isn't going to get them.  Those curves go out 10+ years now.  I think it's not unreasoable to expect the survival curve of the Anti-Pd1s to be just as good if not better than Ipi.

                          Best of luck to you guys.  I'm so glad Jake is back to enjoying life as an 18 year old and not a cancer patient.

                          Brian

                           

                          ET-SF
                          Participant

                            I've also wondered about the durability of the response.  I think ET's oncologist is quite cautious in many ways.  He cautions that we may not want to pull out the big guns (checkpoint blockade drugs) unless/until there is a recurrence or metastasis.  We asked for clarity.  He said there is no evidence that these drugs lose their efficacy with continued use, but that we simply haven't used them long enough to know.  Further, there may be insurance ramifications here in the US, particularly if a Republican administration tears down the insurance regulations that protect us under the ACA.  (I'm putting a lot of words in his mouth here.)

                            When reading the informed consent form for a pembro trial, I noted that Merck is analyzing blood samples to determine whether patients form antibodies to the drug (i.e. anti-antibody antibodies!).  Their only data in this regard may be found in the pembro prescribing information.  They say approx 90 patients were monitored for antibody formation, and none was found.  However, this is not a very large sample size, and it is reasonable that they are trying to cast a broader net to provide a more definitive answer.

                            I was chatting with Justin (Never Gonna Stop) about this issue as well.  He is an immunologist and a smart guy.  He didn't feel a melanoma could mutate around the PD-1L presentation issue in such a way that would attenuate the effectiveness of pembro, unless it might downregulate PD-1L expression or synthesizes a defective PD-1L.  Either of which would make it more vulnerable to attack from CD8 T cells, effectively doing pembro's job.  He also points out that pembro would still have disinhibiting effects on the immune system irrespective of PD-1L expression on the melanoma cells, so it would still have a clinical benefit.  I think what he says makes a lot of sense.

                            My takeaway from all of this is that the drug would probably remain effective (but might not, for reasons we cannot currently anticipate).  However, because this is an insanely expensive drug here in the US (although quite cheap in places like Australia), and because there is deep division in Washington over health care issues, future availability of the drug may hinge on whether we've had it before, what were the results, how much of it we've had, etc.  There could be caps on its usage.

                            ET-SF
                            Participant

                              I've also wondered about the durability of the response.  I think ET's oncologist is quite cautious in many ways.  He cautions that we may not want to pull out the big guns (checkpoint blockade drugs) unless/until there is a recurrence or metastasis.  We asked for clarity.  He said there is no evidence that these drugs lose their efficacy with continued use, but that we simply haven't used them long enough to know.  Further, there may be insurance ramifications here in the US, particularly if a Republican administration tears down the insurance regulations that protect us under the ACA.  (I'm putting a lot of words in his mouth here.)

                              When reading the informed consent form for a pembro trial, I noted that Merck is analyzing blood samples to determine whether patients form antibodies to the drug (i.e. anti-antibody antibodies!).  Their only data in this regard may be found in the pembro prescribing information.  They say approx 90 patients were monitored for antibody formation, and none was found.  However, this is not a very large sample size, and it is reasonable that they are trying to cast a broader net to provide a more definitive answer.

                              I was chatting with Justin (Never Gonna Stop) about this issue as well.  He is an immunologist and a smart guy.  He didn't feel a melanoma could mutate around the PD-1L presentation issue in such a way that would attenuate the effectiveness of pembro, unless it might downregulate PD-1L expression or synthesizes a defective PD-1L.  Either of which would make it more vulnerable to attack from CD8 T cells, effectively doing pembro's job.  He also points out that pembro would still have disinhibiting effects on the immune system irrespective of PD-1L expression on the melanoma cells, so it would still have a clinical benefit.  I think what he says makes a lot of sense.

                              My takeaway from all of this is that the drug would probably remain effective (but might not, for reasons we cannot currently anticipate).  However, because this is an insanely expensive drug here in the US (although quite cheap in places like Australia), and because there is deep division in Washington over health care issues, future availability of the drug may hinge on whether we've had it before, what were the results, how much of it we've had, etc.  There could be caps on its usage.

                              ET-SF
                              Participant

                                I've also wondered about the durability of the response.  I think ET's oncologist is quite cautious in many ways.  He cautions that we may not want to pull out the big guns (checkpoint blockade drugs) unless/until there is a recurrence or metastasis.  We asked for clarity.  He said there is no evidence that these drugs lose their efficacy with continued use, but that we simply haven't used them long enough to know.  Further, there may be insurance ramifications here in the US, particularly if a Republican administration tears down the insurance regulations that protect us under the ACA.  (I'm putting a lot of words in his mouth here.)

                                When reading the informed consent form for a pembro trial, I noted that Merck is analyzing blood samples to determine whether patients form antibodies to the drug (i.e. anti-antibody antibodies!).  Their only data in this regard may be found in the pembro prescribing information.  They say approx 90 patients were monitored for antibody formation, and none was found.  However, this is not a very large sample size, and it is reasonable that they are trying to cast a broader net to provide a more definitive answer.

                                I was chatting with Justin (Never Gonna Stop) about this issue as well.  He is an immunologist and a smart guy.  He didn't feel a melanoma could mutate around the PD-1L presentation issue in such a way that would attenuate the effectiveness of pembro, unless it might downregulate PD-1L expression or synthesizes a defective PD-1L.  Either of which would make it more vulnerable to attack from CD8 T cells, effectively doing pembro's job.  He also points out that pembro would still have disinhibiting effects on the immune system irrespective of PD-1L expression on the melanoma cells, so it would still have a clinical benefit.  I think what he says makes a lot of sense.

                                My takeaway from all of this is that the drug would probably remain effective (but might not, for reasons we cannot currently anticipate).  However, because this is an insanely expensive drug here in the US (although quite cheap in places like Australia), and because there is deep division in Washington over health care issues, future availability of the drug may hinge on whether we've had it before, what were the results, how much of it we've had, etc.  There could be caps on its usage.

                                Momofjake
                                Participant

                                  Okay!

                                  this is exactly the conversation I was looking for!! Our oncologist is a great doc but communication isn't great. Jake has been more steady than I have, crazy cause he is so young. I am however the tenacious advocate who is going to turn over every stone, everywhere to keep my boy alive everyday I can. He got the Pembro before trying ipi etc. Our hospital said Jake was the first to have his insurance put it through before trying the others. Jake didn't look good when we started Pembro! Our insurance case worker calls me often and says she wants jake to live and she will put anything through!! We had his full DNA run to have in case. Not sure this will matter, but it's in our pocket. I just looked and basically it costs about $28k a month to keep jake alive!! My Austalia Mel friends pay $40! I know it's a financial mess…for now I am grateful for very good coverage! Jake also hates the sun now and wants to leave Utah where I live…ugh. 

                                  Anyway, it sounds like for now we all sit tight, let this drug work its magic and enjoy the life it's offering. Btw, I do hear the occasional new tumor while shrinking many others isn't too uncommon. So even though I am a little "shell shocked" from the year, we will get on with it! Thank you fellow fighting friends, there is nowhere else like this board!! True understanding and a wealth of knowledge! 

                                  Prayers and healing to you,

                                  kerri

                                    mrsaxde
                                    Participant

                                      Kerri, from my understanding, confirmed when I saw Dr. Melnyk last week, sometimes tumors will appear to grow temporarily when you get ipi or a PD-1, because of "T-cell infiltration." In other words, the tumor isn't really growing, but appears to be larger because of the presence of the t-cells that are attacking the cancer.

                                      In my case, most of my mets are shrinking with Keytruda. A couple have grown slightly. I take that as one of two things. It's either due to t-cell infiltration, or it's because those spots, one of which was new after my scan in May, actually grew between when I had that scan and when I started Keytruda, in mid-July. In fact, it was due to the presence of two new spots that my old oncologist decided to go ahead with Keytruda. So it's my belief that they are actually shrinking, too, but just aren't back to the size they were in May. I guess when December and my next scan roll around, I'll get the answer to that.

                                      -Bill

                                      mrsaxde
                                      Participant

                                        Kerri, from my understanding, confirmed when I saw Dr. Melnyk last week, sometimes tumors will appear to grow temporarily when you get ipi or a PD-1, because of "T-cell infiltration." In other words, the tumor isn't really growing, but appears to be larger because of the presence of the t-cells that are attacking the cancer.

                                        In my case, most of my mets are shrinking with Keytruda. A couple have grown slightly. I take that as one of two things. It's either due to t-cell infiltration, or it's because those spots, one of which was new after my scan in May, actually grew between when I had that scan and when I started Keytruda, in mid-July. In fact, it was due to the presence of two new spots that my old oncologist decided to go ahead with Keytruda. So it's my belief that they are actually shrinking, too, but just aren't back to the size they were in May. I guess when December and my next scan roll around, I'll get the answer to that.

                                        -Bill

                                        Momofjake
                                        Participant

                                          Thanks Bill. From what I am reading here and everywhere I can find, Jake's chances look pretty good!! It feels like an absolute miracle! He seems to get better everyday. For a full year he got sicker everyday. I just wasn't sure he was going to make it!! My hope is going full speed now!! Jake has a future….

                                          thanks!! 

                                          DZnDef
                                          Participant

                                            Hi Momofjake – I don't have anything truly useful to say as I haven't tried Keytruda.  But I jut wanted to note how absolutely thrilled I a for you and your boy (man now, right?).  I can't imagine anything more difficult than watching your child suffer and battle a horrible disease.  I hope you are both breathing easier now.  May you both have long and healthy lives.

                                            DZnDef
                                            Participant

                                              Hi Momofjake – I don't have anything truly useful to say as I haven't tried Keytruda.  But I jut wanted to note how absolutely thrilled I a for you and your boy (man now, right?).  I can't imagine anything more difficult than watching your child suffer and battle a horrible disease.  I hope you are both breathing easier now.  May you both have long and healthy lives.

                                              DZnDef
                                              Participant

                                                Hi Momofjake – I don't have anything truly useful to say as I haven't tried Keytruda.  But I jut wanted to note how absolutely thrilled I a for you and your boy (man now, right?).  I can't imagine anything more difficult than watching your child suffer and battle a horrible disease.  I hope you are both breathing easier now.  May you both have long and healthy lives.

                                                frikmar
                                                Participant

                                                  Momofjake.

                                                  I see your last comment was 3 years ago in 2015.

                                                  I, 71yrs old, am finishing my 2 years of Pembro trials and is keen to know how your sun is going.

                                                  My melanoma spread on lungs shrinked 52% over 2 years but stuck there for past 4 months.

                                                  With trials ending, and the extreme cost, I wonder how your son is doing….still getting Pembro? How often? … clean or stable?

                                                  Please comment

                                                  Frikkie in RSA

                                                  Momofjake
                                                  Participant

                                                    Thanks Bill. From what I am reading here and everywhere I can find, Jake's chances look pretty good!! It feels like an absolute miracle! He seems to get better everyday. For a full year he got sicker everyday. I just wasn't sure he was going to make it!! My hope is going full speed now!! Jake has a future….

                                                    thanks!! 

                                                    Momofjake
                                                    Participant

                                                      Thanks Bill. From what I am reading here and everywhere I can find, Jake's chances look pretty good!! It feels like an absolute miracle! He seems to get better everyday. For a full year he got sicker everyday. I just wasn't sure he was going to make it!! My hope is going full speed now!! Jake has a future….

                                                      thanks!! 

                                                      mrsaxde
                                                      Participant

                                                        Kerri, from my understanding, confirmed when I saw Dr. Melnyk last week, sometimes tumors will appear to grow temporarily when you get ipi or a PD-1, because of "T-cell infiltration." In other words, the tumor isn't really growing, but appears to be larger because of the presence of the t-cells that are attacking the cancer.

                                                        In my case, most of my mets are shrinking with Keytruda. A couple have grown slightly. I take that as one of two things. It's either due to t-cell infiltration, or it's because those spots, one of which was new after my scan in May, actually grew between when I had that scan and when I started Keytruda, in mid-July. In fact, it was due to the presence of two new spots that my old oncologist decided to go ahead with Keytruda. So it's my belief that they are actually shrinking, too, but just aren't back to the size they were in May. I guess when December and my next scan roll around, I'll get the answer to that.

                                                        -Bill

                                                      Momofjake
                                                      Participant

                                                        Okay!

                                                        this is exactly the conversation I was looking for!! Our oncologist is a great doc but communication isn't great. Jake has been more steady than I have, crazy cause he is so young. I am however the tenacious advocate who is going to turn over every stone, everywhere to keep my boy alive everyday I can. He got the Pembro before trying ipi etc. Our hospital said Jake was the first to have his insurance put it through before trying the others. Jake didn't look good when we started Pembro! Our insurance case worker calls me often and says she wants jake to live and she will put anything through!! We had his full DNA run to have in case. Not sure this will matter, but it's in our pocket. I just looked and basically it costs about $28k a month to keep jake alive!! My Austalia Mel friends pay $40! I know it's a financial mess…for now I am grateful for very good coverage! Jake also hates the sun now and wants to leave Utah where I live…ugh. 

                                                        Anyway, it sounds like for now we all sit tight, let this drug work its magic and enjoy the life it's offering. Btw, I do hear the occasional new tumor while shrinking many others isn't too uncommon. So even though I am a little "shell shocked" from the year, we will get on with it! Thank you fellow fighting friends, there is nowhere else like this board!! True understanding and a wealth of knowledge! 

                                                        Prayers and healing to you,

                                                        kerri

                                                        Momofjake
                                                        Participant

                                                          Okay!

                                                          this is exactly the conversation I was looking for!! Our oncologist is a great doc but communication isn't great. Jake has been more steady than I have, crazy cause he is so young. I am however the tenacious advocate who is going to turn over every stone, everywhere to keep my boy alive everyday I can. He got the Pembro before trying ipi etc. Our hospital said Jake was the first to have his insurance put it through before trying the others. Jake didn't look good when we started Pembro! Our insurance case worker calls me often and says she wants jake to live and she will put anything through!! We had his full DNA run to have in case. Not sure this will matter, but it's in our pocket. I just looked and basically it costs about $28k a month to keep jake alive!! My Austalia Mel friends pay $40! I know it's a financial mess…for now I am grateful for very good coverage! Jake also hates the sun now and wants to leave Utah where I live…ugh. 

                                                          Anyway, it sounds like for now we all sit tight, let this drug work its magic and enjoy the life it's offering. Btw, I do hear the occasional new tumor while shrinking many others isn't too uncommon. So even though I am a little "shell shocked" from the year, we will get on with it! Thank you fellow fighting friends, there is nowhere else like this board!! True understanding and a wealth of knowledge! 

                                                          Prayers and healing to you,

                                                          kerri

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