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Thursday’s the day!!!

Forums General Melanoma Community Thursday’s the day!!!

  • Post
    NYKaren
    Participant

      Howdy all 

      well, nearly 4 years after I first heard the phrase, Thursday I'm going for Merck EA Anti  PD1 at Sloan. 

      with failing almost every treatment out there, including gamma knife for brain mets, 2 rounds of Ipi, and both BRAF treatments, I'm finally getting PD1. With the news that Ipi non-responders have a lower response rate, my excitement is tampered but hopeful. I don't get where these IPI successes are, why would they start PD1?  I guess they were partial responders??  If anyone knows, please advise. 

      Please wish me luck. 

      FYI, I know Dr. Sznol at Yale is starting a trial for brain mets, but he said to me that since I had gamma knife very recently, he advised PD1 ASAP.   So, here I go. 

      Karen

    Viewing 38 reply threads
    • Replies
        Aussielyn
        Participant

          Warm good luck wishes & prayers all the way from Australia for you Karen ! This treatment will be the one that works for you ! All the best , Lyn 

          Aussielyn
          Participant

            Warm good luck wishes & prayers all the way from Australia for you Karen ! This treatment will be the one that works for you ! All the best , Lyn 

              G-Samsa
              Participant

                Karen– you have more grit than anyone ….and have sure earned the NY in your nom de Guerre .  Hope to see you on the 4th flr one day when stars and treatments align.  I'm thinking anti-PD-1 will do it for you!  Thursday can't come soon enough. Best wishes.

                G-Samsa
                Participant

                  Karen– you have more grit than anyone ….and have sure earned the NY in your nom de Guerre .  Hope to see you on the 4th flr one day when stars and treatments align.  I'm thinking anti-PD-1 will do it for you!  Thursday can't come soon enough. Best wishes.

                  G-Samsa
                  Participant

                    Karen– you have more grit than anyone ….and have sure earned the NY in your nom de Guerre .  Hope to see you on the 4th flr one day when stars and treatments align.  I'm thinking anti-PD-1 will do it for you!  Thursday can't come soon enough. Best wishes.

                  Aussielyn
                  Participant

                    Warm good luck wishes & prayers all the way from Australia for you Karen ! This treatment will be the one that works for you ! All the best , Lyn 

                    rosa1
                    Participant

                      Karen- wish you all the best. Prayers coming your way for great success. Think positive! 

                      rosa1
                      Participant

                        Karen- wish you all the best. Prayers coming your way for great success. Think positive! 

                        rosa1
                        Participant

                          Karen- wish you all the best. Prayers coming your way for great success. Think positive! 

                          Bubbles
                          Participant

                            That's great, Karen! I wish you wonderful results!  I am not certain about what exactly you mean with your question. But the studies that noted patients with prior ipi (ipi refractory) responded somewhat less well to anti-PD1 compared those patients to patients who had never taken ipi (ipi naive) at all. However, I am still hopeful for you!!  Yours, Celeste

                              tschmith
                              Participant

                                Karen,  Praying that this is the treatment that works!  I'm in the same boat as you…I recently participated in a clinical trial at NIH called Mage TCR.  It failed, as did other treatments, and now I'm waiting to see if I can also get into Merck's EAP at Georgetown with Dr. Atkins.  Met with Dr. Atkins yesterday and signed the paperwork.  Just have to have blood work.  Hopefully my blood work will be okay.  Just finished the MAGE TCR in April. I was anemic but am no longer so….. we'll see within the next week.  Dr. Atkins said it takes two days to get the drug and wants to start my infusions next week.  They're very interested in seeing how MK3475 (might have the numbers out of order) will work with the cells I received during the MAGE TCR trial at NIH.   I understand what you're saying about Ipi.  If Ipi was a success then why would someone get MK 3475?  I don't know all the trials…was there one where they were a combo?  Oh well, I'm excited and anxious.  My best to you!!!  Looking forward to hearing good news and mild side effects.

                                Terrie

                                 

                                tschmith
                                Participant

                                  Karen,  Praying that this is the treatment that works!  I'm in the same boat as you…I recently participated in a clinical trial at NIH called Mage TCR.  It failed, as did other treatments, and now I'm waiting to see if I can also get into Merck's EAP at Georgetown with Dr. Atkins.  Met with Dr. Atkins yesterday and signed the paperwork.  Just have to have blood work.  Hopefully my blood work will be okay.  Just finished the MAGE TCR in April. I was anemic but am no longer so….. we'll see within the next week.  Dr. Atkins said it takes two days to get the drug and wants to start my infusions next week.  They're very interested in seeing how MK3475 (might have the numbers out of order) will work with the cells I received during the MAGE TCR trial at NIH.   I understand what you're saying about Ipi.  If Ipi was a success then why would someone get MK 3475?  I don't know all the trials…was there one where they were a combo?  Oh well, I'm excited and anxious.  My best to you!!!  Looking forward to hearing good news and mild side effects.

                                  Terrie

                                   

                                  ed williams
                                  Participant

                                    My thoughts are with you, and hope things work out. You seem to have some questions about PD-1 after having Ipi. At the recent ASCO meetings in Chicago Dr. Jedd Wolchok , Dr.Mario Sznol and Dr. Antoni Ribas all gave presentations about findings from various clinical trials on Immunotherapies. If you go to "Youtube" and search under the Doctors names plus ASCO 2014 plus Melanoma you should find lots of expert information on the topic. One other great video on the subject is from the Milken Institute with the title " The Silver Bullet Against Cancer" , several experts in Immunotherapy give various view points of current research in Melanoma. I hope this was helpfull…..  Ed Williams

                                    ed williams
                                    Participant

                                      My thoughts are with you, and hope things work out. You seem to have some questions about PD-1 after having Ipi. At the recent ASCO meetings in Chicago Dr. Jedd Wolchok , Dr.Mario Sznol and Dr. Antoni Ribas all gave presentations about findings from various clinical trials on Immunotherapies. If you go to "Youtube" and search under the Doctors names plus ASCO 2014 plus Melanoma you should find lots of expert information on the topic. One other great video on the subject is from the Milken Institute with the title " The Silver Bullet Against Cancer" , several experts in Immunotherapy give various view points of current research in Melanoma. I hope this was helpfull…..  Ed Williams

                                      ed williams
                                      Participant

                                        My thoughts are with you, and hope things work out. You seem to have some questions about PD-1 after having Ipi. At the recent ASCO meetings in Chicago Dr. Jedd Wolchok , Dr.Mario Sznol and Dr. Antoni Ribas all gave presentations about findings from various clinical trials on Immunotherapies. If you go to "Youtube" and search under the Doctors names plus ASCO 2014 plus Melanoma you should find lots of expert information on the topic. One other great video on the subject is from the Milken Institute with the title " The Silver Bullet Against Cancer" , several experts in Immunotherapy give various view points of current research in Melanoma. I hope this was helpfull…..  Ed Williams

                                        BrianP
                                        Participant

                                          Hey Terrie,

                                          So sorry to hear the Mage TCR hasn't worked out like you hoped.  I think you're right to hope you'll get some benefit down the road with it in conjunction with your next treatment.  There have been many different trials combining Ipi and Nivo (BMS's version of mk-3475).  The trials have been tremendously successful.  They have been done in different sequences and dosages but the most successful seem to be the trials in which Ipi and Nivo where given concurrently (albeit there have been a high percentage of grade 3 and 4 side effects).  Karen mentioned that folks that have failed Ipi haven't been as successful on MK-3475 as perhaps patients that are Ipi Naive.  I haven't seen that but it may be true.  If it is true I don't think that is a reflection of what's occured cellularly or biologically in the patient from the treatments but maybe a reflection that the patients who have already failed Ipi and moved on to anti PD1 probably have a particularly "tricky" mutation of melanoma.  I've been in a Ipi and Nivo seqential trial and have been doing well as of late.  During the time I was on Ipi I had disease progression (along with severe side effects) but since going back on Nivo the disease is beginning to shrink again.  I think I was a non-responder to Ipi but I'll never know for sure.  Hope the process is quick to get you into the EAP program.  Good luck.

                                          Brian 

                                          BrianP
                                          Participant

                                            Hey Terrie,

                                            So sorry to hear the Mage TCR hasn't worked out like you hoped.  I think you're right to hope you'll get some benefit down the road with it in conjunction with your next treatment.  There have been many different trials combining Ipi and Nivo (BMS's version of mk-3475).  The trials have been tremendously successful.  They have been done in different sequences and dosages but the most successful seem to be the trials in which Ipi and Nivo where given concurrently (albeit there have been a high percentage of grade 3 and 4 side effects).  Karen mentioned that folks that have failed Ipi haven't been as successful on MK-3475 as perhaps patients that are Ipi Naive.  I haven't seen that but it may be true.  If it is true I don't think that is a reflection of what's occured cellularly or biologically in the patient from the treatments but maybe a reflection that the patients who have already failed Ipi and moved on to anti PD1 probably have a particularly "tricky" mutation of melanoma.  I've been in a Ipi and Nivo seqential trial and have been doing well as of late.  During the time I was on Ipi I had disease progression (along with severe side effects) but since going back on Nivo the disease is beginning to shrink again.  I think I was a non-responder to Ipi but I'll never know for sure.  Hope the process is quick to get you into the EAP program.  Good luck.

                                            Brian 

                                            BrianP
                                            Participant

                                              Hey Terrie,

                                              So sorry to hear the Mage TCR hasn't worked out like you hoped.  I think you're right to hope you'll get some benefit down the road with it in conjunction with your next treatment.  There have been many different trials combining Ipi and Nivo (BMS's version of mk-3475).  The trials have been tremendously successful.  They have been done in different sequences and dosages but the most successful seem to be the trials in which Ipi and Nivo where given concurrently (albeit there have been a high percentage of grade 3 and 4 side effects).  Karen mentioned that folks that have failed Ipi haven't been as successful on MK-3475 as perhaps patients that are Ipi Naive.  I haven't seen that but it may be true.  If it is true I don't think that is a reflection of what's occured cellularly or biologically in the patient from the treatments but maybe a reflection that the patients who have already failed Ipi and moved on to anti PD1 probably have a particularly "tricky" mutation of melanoma.  I've been in a Ipi and Nivo seqential trial and have been doing well as of late.  During the time I was on Ipi I had disease progression (along with severe side effects) but since going back on Nivo the disease is beginning to shrink again.  I think I was a non-responder to Ipi but I'll never know for sure.  Hope the process is quick to get you into the EAP program.  Good luck.

                                              Brian 

                                              tschmith
                                              Participant

                                                Karen,  Praying that this is the treatment that works!  I'm in the same boat as you…I recently participated in a clinical trial at NIH called Mage TCR.  It failed, as did other treatments, and now I'm waiting to see if I can also get into Merck's EAP at Georgetown with Dr. Atkins.  Met with Dr. Atkins yesterday and signed the paperwork.  Just have to have blood work.  Hopefully my blood work will be okay.  Just finished the MAGE TCR in April. I was anemic but am no longer so….. we'll see within the next week.  Dr. Atkins said it takes two days to get the drug and wants to start my infusions next week.  They're very interested in seeing how MK3475 (might have the numbers out of order) will work with the cells I received during the MAGE TCR trial at NIH.   I understand what you're saying about Ipi.  If Ipi was a success then why would someone get MK 3475?  I don't know all the trials…was there one where they were a combo?  Oh well, I'm excited and anxious.  My best to you!!!  Looking forward to hearing good news and mild side effects.

                                                Terrie

                                                 

                                              Bubbles
                                              Participant

                                                That's great, Karen! I wish you wonderful results!  I am not certain about what exactly you mean with your question. But the studies that noted patients with prior ipi (ipi refractory) responded somewhat less well to anti-PD1 compared those patients to patients who had never taken ipi (ipi naive) at all. However, I am still hopeful for you!!  Yours, Celeste

                                                Bubbles
                                                Participant

                                                  That's great, Karen! I wish you wonderful results!  I am not certain about what exactly you mean with your question. But the studies that noted patients with prior ipi (ipi refractory) responded somewhat less well to anti-PD1 compared those patients to patients who had never taken ipi (ipi naive) at all. However, I am still hopeful for you!!  Yours, Celeste

                                                  Mat
                                                  Participant

                                                    Karen, wishing you success with PD-1.  You've been through a lot.

                                                    Mat
                                                    Participant

                                                      Karen, wishing you success with PD-1.  You've been through a lot.

                                                      Mat
                                                      Participant

                                                        Karen, wishing you success with PD-1.  You've been through a lot.

                                                          King
                                                          Participant

                                                            Karen,

                                                             

                                                            Wishing you all the luck in the world.  Fingers and toes crossed.  You are THE warrior.  Go, go, go!

                                                             

                                                            Stay Strong

                                                            King/Kathie

                                                            Stage IV  7/05  Liver mets

                                                            killmel
                                                            Participant

                                                              Hi Karen,

                                                              I have been away traveling & trying to catch up on all the warriors.

                                                              I am happy to see you finally are going to get Mk3475.

                                                              As you start this drug, how many lesions do you have & where are they.

                                                              You are such a fighter and you are awesome.

                                                              Will pray for a successful outcome for you.

                                                              Marybeth

                                                              killmel
                                                              Participant

                                                                Hi Karen,

                                                                I have been away traveling & trying to catch up on all the warriors.

                                                                I am happy to see you finally are going to get Mk3475.

                                                                As you start this drug, how many lesions do you have & where are they.

                                                                You are such a fighter and you are awesome.

                                                                Will pray for a successful outcome for you.

                                                                Marybeth

                                                                killmel
                                                                Participant

                                                                  Hi Karen,

                                                                  I have been away traveling & trying to catch up on all the warriors.

                                                                  I am happy to see you finally are going to get Mk3475.

                                                                  As you start this drug, how many lesions do you have & where are they.

                                                                  You are such a fighter and you are awesome.

                                                                  Will pray for a successful outcome for you.

                                                                  Marybeth

                                                                  Brendan
                                                                  Participant

                                                                    Good luck, Karen!!!

                                                                    Brendan

                                                                    Brendan
                                                                    Participant

                                                                      Good luck, Karen!!!

                                                                      Brendan

                                                                      Brendan
                                                                      Participant

                                                                        Good luck, Karen!!!

                                                                        Brendan

                                                                        King
                                                                        Participant

                                                                          Karen,

                                                                           

                                                                          Wishing you all the luck in the world.  Fingers and toes crossed.  You are THE warrior.  Go, go, go!

                                                                           

                                                                          Stay Strong

                                                                          King/Kathie

                                                                          Stage IV  7/05  Liver mets

                                                                          King
                                                                          Participant

                                                                            Karen,

                                                                             

                                                                            Wishing you all the luck in the world.  Fingers and toes crossed.  You are THE warrior.  Go, go, go!

                                                                             

                                                                            Stay Strong

                                                                            King/Kathie

                                                                            Stage IV  7/05  Liver mets

                                                                          kylez
                                                                          Participant

                                                                            I'm pulling for you Karen!

                                                                            kylez
                                                                            Participant

                                                                              I'm pulling for you Karen!

                                                                              kylez
                                                                              Participant

                                                                                I'm pulling for you Karen!

                                                                                Hstevens0072
                                                                                Participant

                                                                                  Hi Karen,

                                                                                  i did not respond to Ipi and started mk3475 a year ago.  The results have been amazing – largest tumor is 85% smaller and most others are gone! no new disease and only one recent pesky side effect.

                                                                                  Good Luck!

                                                                                  Holly

                                                                                  Hstevens0072
                                                                                  Participant

                                                                                    Hi Karen,

                                                                                    i did not respond to Ipi and started mk3475 a year ago.  The results have been amazing – largest tumor is 85% smaller and most others are gone! no new disease and only one recent pesky side effect.

                                                                                    Good Luck!

                                                                                    Holly

                                                                                    Hstevens0072
                                                                                    Participant

                                                                                      Hi Karen,

                                                                                      i did not respond to Ipi and started mk3475 a year ago.  The results have been amazing – largest tumor is 85% smaller and most others are gone! no new disease and only one recent pesky side effect.

                                                                                      Good Luck!

                                                                                      Holly

                                                                                      arthurjedi007
                                                                                      Participant

                                                                                        I'm right there with you Karen except at Mayo instead of Sloan. One thing I keep in mind is something someone here said. No matter how many treatments fail you only need to find the one that works for you. Keep yourself as strong as you can.

                                                                                        I get my 3rd dose at Mayo next week. I believe this might finally be the one for me it'll just take it some time to build up and chip away at enough mel cells faster than they grow. So far my 3 visible tumors seem to have stayed the same size so I take that as a great sign. Who knows about the inside but I feel fairly well so something must be working right.

                                                                                        Best of luck to you.

                                                                                        arthurjedi007
                                                                                        Participant

                                                                                          I'm right there with you Karen except at Mayo instead of Sloan. One thing I keep in mind is something someone here said. No matter how many treatments fail you only need to find the one that works for you. Keep yourself as strong as you can.

                                                                                          I get my 3rd dose at Mayo next week. I believe this might finally be the one for me it'll just take it some time to build up and chip away at enough mel cells faster than they grow. So far my 3 visible tumors seem to have stayed the same size so I take that as a great sign. Who knows about the inside but I feel fairly well so something must be working right.

                                                                                          Best of luck to you.

                                                                                          arthurjedi007
                                                                                          Participant

                                                                                            I'm right there with you Karen except at Mayo instead of Sloan. One thing I keep in mind is something someone here said. No matter how many treatments fail you only need to find the one that works for you. Keep yourself as strong as you can.

                                                                                            I get my 3rd dose at Mayo next week. I believe this might finally be the one for me it'll just take it some time to build up and chip away at enough mel cells faster than they grow. So far my 3 visible tumors seem to have stayed the same size so I take that as a great sign. Who knows about the inside but I feel fairly well so something must be working right.

                                                                                            Best of luck to you.

                                                                                            BrianP
                                                                                            Participant

                                                                                              Thinking of you today Karen.  Good luck!

                                                                                              BrianP
                                                                                              Participant

                                                                                                Thinking of you today Karen.  Good luck!

                                                                                                BrianP
                                                                                                Participant

                                                                                                  Thinking of you today Karen.  Good luck!

                                                                                                  Swanee
                                                                                                  Participant

                                                                                                    Wishing you good luck with this treatment Karen, sending positive thoughts and prayers your way that this is the one and you are a complete responder!  You are a strong and courageous mel fighter and an inspiration on this site.  I wish you a smooth treatment with great results, you go girl!!

                                                                                                    Swanee

                                                                                                    Swanee
                                                                                                    Participant

                                                                                                      Wishing you good luck with this treatment Karen, sending positive thoughts and prayers your way that this is the one and you are a complete responder!  You are a strong and courageous mel fighter and an inspiration on this site.  I wish you a smooth treatment with great results, you go girl!!

                                                                                                      Swanee

                                                                                                      Swanee
                                                                                                      Participant

                                                                                                        Wishing you good luck with this treatment Karen, sending positive thoughts and prayers your way that this is the one and you are a complete responder!  You are a strong and courageous mel fighter and an inspiration on this site.  I wish you a smooth treatment with great results, you go girl!!

                                                                                                        Swanee

                                                                                                        kylez
                                                                                                        Participant

                                                                                                          Did you get it? Knock on wood, how dd it go? How are  you doing?

                                                                                                          kylez
                                                                                                          Participant

                                                                                                            Did you get it? Knock on wood, how dd it go? How are  you doing?

                                                                                                            kylez
                                                                                                            Participant

                                                                                                              Did you get it? Knock on wood, how dd it go? How are  you doing?

                                                                                                              NYKaren
                                                                                                              Participant

                                                                                                                Yes, I got it. I have never gotten through Sloan so fast in my life!  Arthur, I remember your post all day. 

                                                                                                                So funny, the nurse laughed when I took a picture of the bag  on the pole. She said no one had ever done that before, but a few of her patients had that day. 

                                                                                                                Only side effect is fatigue, which is pretty much to be expected.  

                                                                                                                Fingers crossed, and I just can't thank all of you for your help and support.

                                                                                                                love, karen

                                                                                                                  kylez
                                                                                                                  Participant

                                                                                                                    I have pics from 2011 of all 4 Ipi bags I got, and a few from my current trial as well.

                                                                                                                    kylez
                                                                                                                    Participant

                                                                                                                      I have pics from 2011 of all 4 Ipi bags I got, and a few from my current trial as well.

                                                                                                                      kylez
                                                                                                                      Participant

                                                                                                                        I have pics from 2011 of all 4 Ipi bags I got, and a few from my current trial as well.

                                                                                                                      NYKaren
                                                                                                                      Participant

                                                                                                                        Yes, I got it. I have never gotten through Sloan so fast in my life!  Arthur, I remember your post all day. 

                                                                                                                        So funny, the nurse laughed when I took a picture of the bag  on the pole. She said no one had ever done that before, but a few of her patients had that day. 

                                                                                                                        Only side effect is fatigue, which is pretty much to be expected.  

                                                                                                                        Fingers crossed, and I just can't thank all of you for your help and support.

                                                                                                                        love, karen

                                                                                                                        NYKaren
                                                                                                                        Participant

                                                                                                                          Yes, I got it. I have never gotten through Sloan so fast in my life!  Arthur, I remember your post all day. 

                                                                                                                          So funny, the nurse laughed when I took a picture of the bag  on the pole. She said no one had ever done that before, but a few of her patients had that day. 

                                                                                                                          Only side effect is fatigue, which is pretty much to be expected.  

                                                                                                                          Fingers crossed, and I just can't thank all of you for your help and support.

                                                                                                                          love, karen

                                                                                                                          GAngel
                                                                                                                          Participant

                                                                                                                            Praying that this treatment will work for you….you have been through a lot….this WILL work….believe it will with every fiber of your being….the mind is a powerful thing we have and should use to fight against disease.  If you're a Christian, pray for divine intervention, the Good Lord gives us hope and is able to give the gift of spiritual healing! Blessings and love to you!

                                                                                                                            Gina

                                                                                                                            GAngel
                                                                                                                            Participant

                                                                                                                              Praying that this treatment will work for you….you have been through a lot….this WILL work….believe it will with every fiber of your being….the mind is a powerful thing we have and should use to fight against disease.  If you're a Christian, pray for divine intervention, the Good Lord gives us hope and is able to give the gift of spiritual healing! Blessings and love to you!

                                                                                                                              Gina

                                                                                                                              GAngel
                                                                                                                              Participant

                                                                                                                                Praying that this treatment will work for you….you have been through a lot….this WILL work….believe it will with every fiber of your being….the mind is a powerful thing we have and should use to fight against disease.  If you're a Christian, pray for divine intervention, the Good Lord gives us hope and is able to give the gift of spiritual healing! Blessings and love to you!

                                                                                                                                Gina

                                                                                                                                kylez
                                                                                                                                Participant

                                                                                                                                  How's it going Karen?

                                                                                                                                  kylez
                                                                                                                                  Participant

                                                                                                                                    How's it going Karen?

                                                                                                                                    kylez
                                                                                                                                    Participant

                                                                                                                                      How's it going Karen?

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