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It’s ANTI- PD1 guys…..(melanoma preventive drug)

Forums General Melanoma Community It’s ANTI- PD1 guys…..(melanoma preventive drug)

  • Post
    Snickers60
    Participant

      This is the drug that Dr. Bedikian told Wayne they hoped would be available for Wayne in a few months !      Just found out and letting you know ! 

      This is the drug that Dr. Bedikian told Wayne they hoped would be available for Wayne in a few months !      Just found out and letting you know ! 

    Viewing 14 reply threads
    • Replies
        NYKaren
        Participant

          One can only hope!

          karen

          NYKaren
          Participant

            One can only hope!

            karen

            NYKaren
            Participant

              One can only hope!

              karen

              Roxy1453
              Participant
                My Dr. Has also told me that anti PD1 should be coming out in the next few months!

                I have one spot left behind my knee. We are waiting 3 months to see if the Ippi and radiation worked. It is sitting on a nerve so removing it is not a good option.

                Nancy

                Roxy1453
                Participant
                  My Dr. Has also told me that anti PD1 should be coming out in the next few months!

                  I have one spot left behind my knee. We are waiting 3 months to see if the Ippi and radiation worked. It is sitting on a nerve so removing it is not a good option.

                  Nancy

                  Roxy1453
                  Participant
                    My Dr. Has also told me that anti PD1 should be coming out in the next few months!

                    I have one spot left behind my knee. We are waiting 3 months to see if the Ippi and radiation worked. It is sitting on a nerve so removing it is not a good option.

                    Nancy

                    killmel
                    Participant

                      Hi,

                       

                      When you say anti-pd1 drug is (available) coming,are you talking about a clinical trial???? If so,who is the sponsor???

                       

                      Thanks for answering my question.

                       

                      Amy

                        rbruce
                        Participant

                          Anti-pd1 is only in clinical trials. BMS is trying to fast track their version to phase 3 which has been in trials for a few years now. Merck's version began around the 1st of this year and is still years away from FDA approval.  With the successes reported at ASCO this year of the BMS drug, and the early reports of success with Merck's, I believe the industry will speed these trials along.  Watch for combo trials that are starting up.  After failed biochemo and failed pi3k, anti-pd1 is working for me with minimal side effects. 40% tumor reduction at 12 week scans! Had my 24 week pet/ct yesterday and waiting for results.  For those whose tumors express the pd ligand, this is a game changer. I was diagnosed stage 4 in March of 2011, braf negative, nras q61+. 

                          rbruce
                          Participant

                            Anti-pd1 is only in clinical trials. BMS is trying to fast track their version to phase 3 which has been in trials for a few years now. Merck's version began around the 1st of this year and is still years away from FDA approval.  With the successes reported at ASCO this year of the BMS drug, and the early reports of success with Merck's, I believe the industry will speed these trials along.  Watch for combo trials that are starting up.  After failed biochemo and failed pi3k, anti-pd1 is working for me with minimal side effects. 40% tumor reduction at 12 week scans! Had my 24 week pet/ct yesterday and waiting for results.  For those whose tumors express the pd ligand, this is a game changer. I was diagnosed stage 4 in March of 2011, braf negative, nras q61+. 

                            killmel
                            Participant

                              Robert,

                               

                              Thank you for the explanation. How wonderful for you to get a response so quickly. What are your side effects?

                              Please post the results of your scans from yesterday. You gives us all hope.

                              I will pray for clear scans for you.

                              God Bless you

                              Amy

                              killmel
                              Participant

                                Robert,

                                 

                                Thank you for the explanation. How wonderful for you to get a response so quickly. What are your side effects?

                                Please post the results of your scans from yesterday. You gives us all hope.

                                I will pray for clear scans for you.

                                God Bless you

                                Amy

                                killmel
                                Participant

                                  Robert,

                                   

                                  Thank you for the explanation. How wonderful for you to get a response so quickly. What are your side effects?

                                  Please post the results of your scans from yesterday. You gives us all hope.

                                  I will pray for clear scans for you.

                                  God Bless you

                                  Amy

                                  rbruce
                                  Participant

                                    Amy,  please complete a profile as I do not like to share with anonomous posts.  Are you the patient or a caregiver?  What stage, etc.  

                                    rbruce
                                    Participant

                                      Amy,  please complete a profile as I do not like to share with anonomous posts.  Are you the patient or a caregiver?  What stage, etc.  

                                      rbruce
                                      Participant

                                        Amy,  please complete a profile as I do not like to share with anonomous posts.  Are you the patient or a caregiver?  What stage, etc.  

                                        killmel
                                        Participant

                                          Hello Robert,

                                           

                                          I am so that I offended you that I do not have a profile done.

                                          I am 80 years old and I do not know how to do the computer well. I could not figure out how to do the profile, etc. My granddaughter has melanoma.

                                          It seems to me that I offered you my prayers but it appears that knowing my profile is more important to you.Since you have a rule about sharing with anonmous posts,  please do not share any information with me. That seems very important ot you.

                                          I will be more careful  to  post next time (if there is a next time). I was just offering my  prayers to warriors of this terrible disease.

                                          Do other members of the board feel  the same way as Robert???  Please post your response so I know not to post any longer.

                                          Thanks so much for your time to read my post and reply. I apologize to everyone.

                                          Amy

                                          killmel
                                          Participant

                                            Robert,

                                            I forgot to type "SORRY" in the first line, I get confused sometimes:

                                            I am so SORRY  that I offended you that I do not have a profile done.

                                            Amy

                                            killmel
                                            Participant

                                              Robert,

                                              I forgot to type "SORRY" in the first line, I get confused sometimes:

                                              I am so SORRY  that I offended you that I do not have a profile done.

                                              Amy

                                              killmel
                                              Participant

                                                Robert,

                                                I forgot to type "SORRY" in the first line, I get confused sometimes:

                                                I am so SORRY  that I offended you that I do not have a profile done.

                                                Amy

                                                rbruce
                                                Participant

                                                  Please re read my post as you misunderstood it.  I am not offended by your post and I welcome anyones prayers for me and the rest on this forum.  What I said was I don't like to share posts with those that have not created a profile.  I then asked questions about your situation in order to provide relevant comments.  This disease is a very personal and intimate journey  and if someone is asking specific questions about my disease I would appreciate knowing who I am speaking with, this is a 2 way street.  I know many on this forum with melanoma feel the same way.  Please do not stop posting on my account, but you will get much more out of this forum if you get someone to help you create a profile and tell us about your granddaughters case. That way you will receive more specific and targeted support and  advice to help you support her.  Better yet, is she old enough for a profile of her own?  This forum has been a huge support for us in the battle and may be for her as well.

                                                  Robert

                                                  NYKaren
                                                  Participant
                                                    Dear Amy,
                                                    You’re not annonymous, you’re Amy! How wonderful that you’re here on behalf of your granddaughter.
                                                    Robert makes some valid points. We could be of more help if we knew more about your granddaughter’s diagnosis. Maybe someone could help you with your profile. ( my mom is just a bit older than you…I wish she were half as computer-literate as you!)
                                                    I have always found “annonymous” off-putting and find it much easier to correspond to a name.
                                                    I hope this is helpful…I guarantee that Robert was trying to be of help, and we all appreciate prayers.
                                                    Karen
                                                    PS. I know sometimes people use annonymous (as I once did) to report/discourage inappropriate postings, but i just don’t find the same intimacy if it’s used regularly. Just my own personal feelings, folks.
                                                    audgator
                                                    Participant

                                                      Just as a side note, sometimes in long discussions we get more than one "annonymous" posting & it gets confusing. Hang in there, Amy.

                                                      bcl
                                                      Participant

                                                        I agree, but think Amy should get some credit for giving her name at the end of her 'anonymous' post in an attempt to differentiate her post from others. (Such a pity that even after explaining her situation she is still not able to get a reply to her questions though!)

                                                        rbruce
                                                        Participant

                                                          Dear Anonymous, What questions did she not get a reply to?  "Such a pity" is pretty strong language to a group of giving, sharing warriors.

                                                          bcl
                                                          Participant

                                                             

                                                            You mentioned minimal side effects and Amy asked, "What are your side effects? "and "Please post the results of your scans from yesterday"  You then said 

                                                            "I don't like to share posts with those that have not created a profile.  I then asked questions about your situation in order to provide relevant comments.  This disease is a very personal and intimate journey  and if someone is asking specific questions about my disease I would appreciate knowing who I am speaking with, this is a 2 way street.  I know many on this forum with melanoma feel the same way.  Please do not stop posting on my account, but you will get much more out of this forum if you get someone to help you create a profile and tell us about your granddaughters case. That way you will receive more specific and targeted support and  advice to help you support her.  Better yet, is she old enough for a profile of her own?  This forum has been a huge support for us in the battle and may be for her as well."

                                                             

                                                            It is your choice to share with whomever you chose, just as it is my choice to feel pity for an elderly grandma who searches the internet for information to help a feared for grandchild  A 'child'  who may be in dire need of help. (Perhaps even in too much pain to post on the internet, or off in another state with grandma surviving on snippets of information.. all of it worrisome.) Pity is a strong emotion. 

                                                             

                                                             

                                                            bcl
                                                            Participant

                                                               

                                                              You mentioned minimal side effects and Amy asked, "What are your side effects? "and "Please post the results of your scans from yesterday"  You then said 

                                                              "I don't like to share posts with those that have not created a profile.  I then asked questions about your situation in order to provide relevant comments.  This disease is a very personal and intimate journey  and if someone is asking specific questions about my disease I would appreciate knowing who I am speaking with, this is a 2 way street.  I know many on this forum with melanoma feel the same way.  Please do not stop posting on my account, but you will get much more out of this forum if you get someone to help you create a profile and tell us about your granddaughters case. That way you will receive more specific and targeted support and  advice to help you support her.  Better yet, is she old enough for a profile of her own?  This forum has been a huge support for us in the battle and may be for her as well."

                                                               

                                                              It is your choice to share with whomever you chose, just as it is my choice to feel pity for an elderly grandma who searches the internet for information to help a feared for grandchild  A 'child'  who may be in dire need of help. (Perhaps even in too much pain to post on the internet, or off in another state with grandma surviving on snippets of information.. all of it worrisome.) Pity is a strong emotion. 

                                                               

                                                               

                                                              bcl
                                                              Participant

                                                                 

                                                                You mentioned minimal side effects and Amy asked, "What are your side effects? "and "Please post the results of your scans from yesterday"  You then said 

                                                                "I don't like to share posts with those that have not created a profile.  I then asked questions about your situation in order to provide relevant comments.  This disease is a very personal and intimate journey  and if someone is asking specific questions about my disease I would appreciate knowing who I am speaking with, this is a 2 way street.  I know many on this forum with melanoma feel the same way.  Please do not stop posting on my account, but you will get much more out of this forum if you get someone to help you create a profile and tell us about your granddaughters case. That way you will receive more specific and targeted support and  advice to help you support her.  Better yet, is she old enough for a profile of her own?  This forum has been a huge support for us in the battle and may be for her as well."

                                                                 

                                                                It is your choice to share with whomever you chose, just as it is my choice to feel pity for an elderly grandma who searches the internet for information to help a feared for grandchild  A 'child'  who may be in dire need of help. (Perhaps even in too much pain to post on the internet, or off in another state with grandma surviving on snippets of information.. all of it worrisome.) Pity is a strong emotion. 

                                                                 

                                                                 

                                                                rbruce
                                                                Participant

                                                                  Dear Anonymous, What questions did she not get a reply to?  "Such a pity" is pretty strong language to a group of giving, sharing warriors.

                                                                  rbruce
                                                                  Participant

                                                                    Dear Anonymous, What questions did she not get a reply to?  "Such a pity" is pretty strong language to a group of giving, sharing warriors.

                                                                    bcl
                                                                    Participant

                                                                      I agree, but think Amy should get some credit for giving her name at the end of her 'anonymous' post in an attempt to differentiate her post from others. (Such a pity that even after explaining her situation she is still not able to get a reply to her questions though!)

                                                                      bcl
                                                                      Participant

                                                                        I agree, but think Amy should get some credit for giving her name at the end of her 'anonymous' post in an attempt to differentiate her post from others. (Such a pity that even after explaining her situation she is still not able to get a reply to her questions though!)

                                                                        audgator
                                                                        Participant

                                                                          Just as a side note, sometimes in long discussions we get more than one "annonymous" posting & it gets confusing. Hang in there, Amy.

                                                                          audgator
                                                                          Participant

                                                                            Just as a side note, sometimes in long discussions we get more than one "annonymous" posting & it gets confusing. Hang in there, Amy.

                                                                            NYKaren
                                                                            Participant
                                                                              Dear Amy,
                                                                              You’re not annonymous, you’re Amy! How wonderful that you’re here on behalf of your granddaughter.
                                                                              Robert makes some valid points. We could be of more help if we knew more about your granddaughter’s diagnosis. Maybe someone could help you with your profile. ( my mom is just a bit older than you…I wish she were half as computer-literate as you!)
                                                                              I have always found “annonymous” off-putting and find it much easier to correspond to a name.
                                                                              I hope this is helpful…I guarantee that Robert was trying to be of help, and we all appreciate prayers.
                                                                              Karen
                                                                              PS. I know sometimes people use annonymous (as I once did) to report/discourage inappropriate postings, but i just don’t find the same intimacy if it’s used regularly. Just my own personal feelings, folks.
                                                                              NYKaren
                                                                              Participant
                                                                                Dear Amy,
                                                                                You’re not annonymous, you’re Amy! How wonderful that you’re here on behalf of your granddaughter.
                                                                                Robert makes some valid points. We could be of more help if we knew more about your granddaughter’s diagnosis. Maybe someone could help you with your profile. ( my mom is just a bit older than you…I wish she were half as computer-literate as you!)
                                                                                I have always found “annonymous” off-putting and find it much easier to correspond to a name.
                                                                                I hope this is helpful…I guarantee that Robert was trying to be of help, and we all appreciate prayers.
                                                                                Karen
                                                                                PS. I know sometimes people use annonymous (as I once did) to report/discourage inappropriate postings, but i just don’t find the same intimacy if it’s used regularly. Just my own personal feelings, folks.
                                                                                rbruce
                                                                                Participant

                                                                                  Please re read my post as you misunderstood it.  I am not offended by your post and I welcome anyones prayers for me and the rest on this forum.  What I said was I don't like to share posts with those that have not created a profile.  I then asked questions about your situation in order to provide relevant comments.  This disease is a very personal and intimate journey  and if someone is asking specific questions about my disease I would appreciate knowing who I am speaking with, this is a 2 way street.  I know many on this forum with melanoma feel the same way.  Please do not stop posting on my account, but you will get much more out of this forum if you get someone to help you create a profile and tell us about your granddaughters case. That way you will receive more specific and targeted support and  advice to help you support her.  Better yet, is she old enough for a profile of her own?  This forum has been a huge support for us in the battle and may be for her as well.

                                                                                  Robert

                                                                                  rbruce
                                                                                  Participant

                                                                                    Please re read my post as you misunderstood it.  I am not offended by your post and I welcome anyones prayers for me and the rest on this forum.  What I said was I don't like to share posts with those that have not created a profile.  I then asked questions about your situation in order to provide relevant comments.  This disease is a very personal and intimate journey  and if someone is asking specific questions about my disease I would appreciate knowing who I am speaking with, this is a 2 way street.  I know many on this forum with melanoma feel the same way.  Please do not stop posting on my account, but you will get much more out of this forum if you get someone to help you create a profile and tell us about your granddaughters case. That way you will receive more specific and targeted support and  advice to help you support her.  Better yet, is she old enough for a profile of her own?  This forum has been a huge support for us in the battle and may be for her as well.

                                                                                    Robert

                                                                                    killmel
                                                                                    Participant

                                                                                      Hello Robert,

                                                                                       

                                                                                      I am so that I offended you that I do not have a profile done.

                                                                                      I am 80 years old and I do not know how to do the computer well. I could not figure out how to do the profile, etc. My granddaughter has melanoma.

                                                                                      It seems to me that I offered you my prayers but it appears that knowing my profile is more important to you.Since you have a rule about sharing with anonmous posts,  please do not share any information with me. That seems very important ot you.

                                                                                      I will be more careful  to  post next time (if there is a next time). I was just offering my  prayers to warriors of this terrible disease.

                                                                                      Do other members of the board feel  the same way as Robert???  Please post your response so I know not to post any longer.

                                                                                      Thanks so much for your time to read my post and reply. I apologize to everyone.

                                                                                      Amy

                                                                                      killmel
                                                                                      Participant

                                                                                        Hello Robert,

                                                                                         

                                                                                        I am so that I offended you that I do not have a profile done.

                                                                                        I am 80 years old and I do not know how to do the computer well. I could not figure out how to do the profile, etc. My granddaughter has melanoma.

                                                                                        It seems to me that I offered you my prayers but it appears that knowing my profile is more important to you.Since you have a rule about sharing with anonmous posts,  please do not share any information with me. That seems very important ot you.

                                                                                        I will be more careful  to  post next time (if there is a next time). I was just offering my  prayers to warriors of this terrible disease.

                                                                                        Do other members of the board feel  the same way as Robert???  Please post your response so I know not to post any longer.

                                                                                        Thanks so much for your time to read my post and reply. I apologize to everyone.

                                                                                        Amy

                                                                                        NYKaren
                                                                                        Participant
                                                                                          Hi Robert,
                                                                                          I was told at 1.5, more like 2 years. Do you think maybe sooner? I’ve exhausted all options and am (along w/my doc) currently hoping chemo keeps me stable until there’s a PD1 trial I can get into. Or if it’s FDA approved.
                                                                                          Karen
                                                                                          Snickers60
                                                                                          Participant

                                                                                            Dr. B told us this drug would be ready for people who had NO MELENOMA in a couple of months !  πŸ™‚     Wayne has one small spot on this leg above his knee and Dr. B is waiting to see if this spot is just stubborn and taking a little longer as ALL of his other spots (8) were gone in 7 weeks.  Liver, lungs, sternum, spine.   He will do a biopsy in Oct./Nov. if it's still there to confirm Melly and then do surgery to remove it, making Wayne a candidate for this drug !   That's what we were told.  πŸ™‚     We did ask his assistant for the name of the drug a second time and thought she may have gotten B and D mixed up, but we're still not sure.    Will know more on Sept. visit !   You know how that second hand info is……..but he seemed to think it would be ready for Wayne by end of the year at the latest.   ?????  πŸ™‚

                                                                                            Nancy (devoted wife of 3 X Warrior Wayne)  

                                                                                            rbruce
                                                                                            Participant

                                                                                              Nancy,

                                                                                              Please try and get a clarification on this from your Dr. and post what you find out as so many like NYKaren are down to limited or 0 options and are just waiting for news on PD-1.  For me, information like pd-1 coming gave me hope and got me through really bad times. I felt like a kid on Christmas the day I was accepted into the trial.  All any of us ask for is a glimmer of hope to keep us going until the next discovery that may lead to a cure for the beast.  Thanks for sharing !

                                                                                              Thanks,

                                                                                              Robert

                                                                                              rbruce
                                                                                              Participant

                                                                                                Nancy,

                                                                                                Please try and get a clarification on this from your Dr. and post what you find out as so many like NYKaren are down to limited or 0 options and are just waiting for news on PD-1.  For me, information like pd-1 coming gave me hope and got me through really bad times. I felt like a kid on Christmas the day I was accepted into the trial.  All any of us ask for is a glimmer of hope to keep us going until the next discovery that may lead to a cure for the beast.  Thanks for sharing !

                                                                                                Thanks,

                                                                                                Robert

                                                                                                rbruce
                                                                                                Participant

                                                                                                  Nancy,

                                                                                                  Please try and get a clarification on this from your Dr. and post what you find out as so many like NYKaren are down to limited or 0 options and are just waiting for news on PD-1.  For me, information like pd-1 coming gave me hope and got me through really bad times. I felt like a kid on Christmas the day I was accepted into the trial.  All any of us ask for is a glimmer of hope to keep us going until the next discovery that may lead to a cure for the beast.  Thanks for sharing !

                                                                                                  Thanks,

                                                                                                  Robert

                                                                                                  LynnLuc
                                                                                                  Participant

                                                                                                    I know from speaking with BMS on the phone a couple months ago that their Anti PD-1 will not be approved for at least another  year and half to 2 years… they should know! No one should hang their hopes on any drug that is still in phase one trials waiting to get it approved. I have been doing it since fall 2010 and I have been NED for 2 years 5 months. I have next treatment on Sept 5 and then I will only have 2 treatments left in the trial. I am in week 101 of the trial now.

                                                                                                    LynnLuc
                                                                                                    Participant

                                                                                                      I know from speaking with BMS on the phone a couple months ago that their Anti PD-1 will not be approved for at least another  year and half to 2 years… they should know! No one should hang their hopes on any drug that is still in phase one trials waiting to get it approved. I have been doing it since fall 2010 and I have been NED for 2 years 5 months. I have next treatment on Sept 5 and then I will only have 2 treatments left in the trial. I am in week 101 of the trial now.

                                                                                                      LynnLuc
                                                                                                      Participant

                                                                                                        I know from speaking with BMS on the phone a couple months ago that their Anti PD-1 will not be approved for at least another  year and half to 2 years… they should know! No one should hang their hopes on any drug that is still in phase one trials waiting to get it approved. I have been doing it since fall 2010 and I have been NED for 2 years 5 months. I have next treatment on Sept 5 and then I will only have 2 treatments left in the trial. I am in week 101 of the trial now.

                                                                                                        Snickers60
                                                                                                        Participant

                                                                                                          Dr. B told us this drug would be ready for people who had NO MELENOMA in a couple of months !  πŸ™‚     Wayne has one small spot on this leg above his knee and Dr. B is waiting to see if this spot is just stubborn and taking a little longer as ALL of his other spots (8) were gone in 7 weeks.  Liver, lungs, sternum, spine.   He will do a biopsy in Oct./Nov. if it's still there to confirm Melly and then do surgery to remove it, making Wayne a candidate for this drug !   That's what we were told.  πŸ™‚     We did ask his assistant for the name of the drug a second time and thought she may have gotten B and D mixed up, but we're still not sure.    Will know more on Sept. visit !   You know how that second hand info is……..but he seemed to think it would be ready for Wayne by end of the year at the latest.   ?????  πŸ™‚

                                                                                                          Nancy (devoted wife of 3 X Warrior Wayne)  

                                                                                                          Snickers60
                                                                                                          Participant

                                                                                                            Dr. B told us this drug would be ready for people who had NO MELENOMA in a couple of months !  πŸ™‚     Wayne has one small spot on this leg above his knee and Dr. B is waiting to see if this spot is just stubborn and taking a little longer as ALL of his other spots (8) were gone in 7 weeks.  Liver, lungs, sternum, spine.   He will do a biopsy in Oct./Nov. if it's still there to confirm Melly and then do surgery to remove it, making Wayne a candidate for this drug !   That's what we were told.  πŸ™‚     We did ask his assistant for the name of the drug a second time and thought she may have gotten B and D mixed up, but we're still not sure.    Will know more on Sept. visit !   You know how that second hand info is……..but he seemed to think it would be ready for Wayne by end of the year at the latest.   ?????  πŸ™‚

                                                                                                            Nancy (devoted wife of 3 X Warrior Wayne)  

                                                                                                            rbruce
                                                                                                            Participant

                                                                                                              Karen,

                                                                                                              I have been told that there are combo trials starting up pretty soon that will include anti-pd-1 and other drugs.  I've also heard that anti-pd-1 may be approved fairly soon for other cancer types and be available off label for melanoma.  Not sure why, buyt maybe it's been in trials for other cancers longer?? Maybe that is what Dr. B at MD Anderson is talking about?  Have you or your Dr. tried reaching out to BMS or Merck and asking for a compassionate use?

                                                                                                              Robert

                                                                                                              NYKaren
                                                                                                              Participant
                                                                                                                Yep, Dr. Wolchok had tried. I’m seeing him on Thursday so I’ll pump him again then. Thanks, Robert.
                                                                                                                Snickers60
                                                                                                                Participant

                                                                                                                  Wayne said he would write Dr. B's assistant again this week to verify.   He is saying it's a PREVENTIVE MED – and that's why you have to be cancer free (NED) to take it.   We had a lot going on at this trip finding out about the spot and staying over and, and, and…..so we were very focused on what was going on then, and what we were going to do – surgery – no surgery – wait  – see etc., so we were not paying close enough attention.  I should have written it down as I take notes while Wayne is with Doc. 

                                                                                                                  We'll find out…..give us a few days.   

                                                                                                                  I know this and all info it vital to everyone fighting this nasty beast ! 

                                                                                                                  Nancy (devoted wife of 3 X Warrior Wayne )

                                                                                                                  LynnLuc
                                                                                                                  Participant

                                                                                                                    I am in this BMS-936558  trial…Monoclonal Antibody Therapy and Vaccine Therapy in Treating Patients With Stage IIIC or IV Melanoma That Has Been Removed By Surgery   also titled-

                                                                                                                    Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy Comprising gp100:209-217(210M) Peptide, MART-1:26-35(27L) Peptide, gp100:280-288(288V) Peptide, NY-ESO-1 Peptide, and Montanide ISA 51 VG in Patients With Resected Stage IIIC or IV Melanoma
                                                                                                                     
                                                                                                                    I had surgery then started the trial….this is exactly the same treatment as those without being NED, except my trial started a couple weeks before the sister trial at Moffitt. At this time Moffitt is the only center using it on NED patients.
                                                                                                                     
                                                                                                                    When BMS gets the anti pd 1 approved, it will be for all melanoma patients…not only for the NED patients.  The person I spoke with did mention it might be approved for kidney cancer before its approved for melanoma, but that was as yet uncertain.
                                                                                                                    LynnLuc
                                                                                                                    Participant

                                                                                                                      I am in this BMS-936558  trial…Monoclonal Antibody Therapy and Vaccine Therapy in Treating Patients With Stage IIIC or IV Melanoma That Has Been Removed By Surgery   also titled-

                                                                                                                      Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy Comprising gp100:209-217(210M) Peptide, MART-1:26-35(27L) Peptide, gp100:280-288(288V) Peptide, NY-ESO-1 Peptide, and Montanide ISA 51 VG in Patients With Resected Stage IIIC or IV Melanoma
                                                                                                                       
                                                                                                                      I had surgery then started the trial….this is exactly the same treatment as those without being NED, except my trial started a couple weeks before the sister trial at Moffitt. At this time Moffitt is the only center using it on NED patients.
                                                                                                                       
                                                                                                                      When BMS gets the anti pd 1 approved, it will be for all melanoma patients…not only for the NED patients.  The person I spoke with did mention it might be approved for kidney cancer before its approved for melanoma, but that was as yet uncertain.
                                                                                                                      LynnLuc
                                                                                                                      Participant

                                                                                                                        I am in this BMS-936558  trial…Monoclonal Antibody Therapy and Vaccine Therapy in Treating Patients With Stage IIIC or IV Melanoma That Has Been Removed By Surgery   also titled-

                                                                                                                        Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy Comprising gp100:209-217(210M) Peptide, MART-1:26-35(27L) Peptide, gp100:280-288(288V) Peptide, NY-ESO-1 Peptide, and Montanide ISA 51 VG in Patients With Resected Stage IIIC or IV Melanoma
                                                                                                                         
                                                                                                                        I had surgery then started the trial….this is exactly the same treatment as those without being NED, except my trial started a couple weeks before the sister trial at Moffitt. At this time Moffitt is the only center using it on NED patients.
                                                                                                                         
                                                                                                                        When BMS gets the anti pd 1 approved, it will be for all melanoma patients…not only for the NED patients.  The person I spoke with did mention it might be approved for kidney cancer before its approved for melanoma, but that was as yet uncertain.
                                                                                                                        Snickers60
                                                                                                                        Participant

                                                                                                                          Wayne said he would write Dr. B's assistant again this week to verify.   He is saying it's a PREVENTIVE MED – and that's why you have to be cancer free (NED) to take it.   We had a lot going on at this trip finding out about the spot and staying over and, and, and…..so we were very focused on what was going on then, and what we were going to do – surgery – no surgery – wait  – see etc., so we were not paying close enough attention.  I should have written it down as I take notes while Wayne is with Doc. 

                                                                                                                          We'll find out…..give us a few days.   

                                                                                                                          I know this and all info it vital to everyone fighting this nasty beast ! 

                                                                                                                          Nancy (devoted wife of 3 X Warrior Wayne )

                                                                                                                          Snickers60
                                                                                                                          Participant

                                                                                                                            Wayne said he would write Dr. B's assistant again this week to verify.   He is saying it's a PREVENTIVE MED – and that's why you have to be cancer free (NED) to take it.   We had a lot going on at this trip finding out about the spot and staying over and, and, and…..so we were very focused on what was going on then, and what we were going to do – surgery – no surgery – wait  – see etc., so we were not paying close enough attention.  I should have written it down as I take notes while Wayne is with Doc. 

                                                                                                                            We'll find out…..give us a few days.   

                                                                                                                            I know this and all info it vital to everyone fighting this nasty beast ! 

                                                                                                                            Nancy (devoted wife of 3 X Warrior Wayne )

                                                                                                                            lhaley
                                                                                                                            Participant

                                                                                                                              Karen,

                                                                                                                              This is a "different" antipd1 by ammipline (guessing on the spelling) that is offerered in Pineville NC.  I only know of one person on this trial and last I heard he is not doing well (at least he has lost like 60 pounds).  Pineville is about 30 min from Charlotte NC.  I don't know anything about this but if you want I can find a link for you.

                                                                                                                              linda

                                                                                                                              killmel
                                                                                                                              Participant

                                                                                                                                I think that this is the trial that you are talking about:

                                                                                                                                http://clinicaltrials.gov/ct2/show/NCT01352884?term=nct+01352884&rank=1

                                                                                                                                killmel
                                                                                                                                Participant

                                                                                                                                  I think that this is the trial that you are talking about:

                                                                                                                                  http://clinicaltrials.gov/ct2/show/NCT01352884?term=nct+01352884&rank=1

                                                                                                                                  killmel
                                                                                                                                  Participant

                                                                                                                                    I think that this is the trial that you are talking about:

                                                                                                                                    http://clinicaltrials.gov/ct2/show/NCT01352884?term=nct+01352884&rank=1

                                                                                                                                    lhaley
                                                                                                                                    Participant

                                                                                                                                      Karen,

                                                                                                                                      This is a "different" antipd1 by ammipline (guessing on the spelling) that is offerered in Pineville NC.  I only know of one person on this trial and last I heard he is not doing well (at least he has lost like 60 pounds).  Pineville is about 30 min from Charlotte NC.  I don't know anything about this but if you want I can find a link for you.

                                                                                                                                      linda

                                                                                                                                      lhaley
                                                                                                                                      Participant

                                                                                                                                        Karen,

                                                                                                                                        This is a "different" antipd1 by ammipline (guessing on the spelling) that is offerered in Pineville NC.  I only know of one person on this trial and last I heard he is not doing well (at least he has lost like 60 pounds).  Pineville is about 30 min from Charlotte NC.  I don't know anything about this but if you want I can find a link for you.

                                                                                                                                        linda

                                                                                                                                        NYKaren
                                                                                                                                        Participant
                                                                                                                                          Yep, Dr. Wolchok had tried. I’m seeing him on Thursday so I’ll pump him again then. Thanks, Robert.
                                                                                                                                          NYKaren
                                                                                                                                          Participant
                                                                                                                                            Yep, Dr. Wolchok had tried. I’m seeing him on Thursday so I’ll pump him again then. Thanks, Robert.
                                                                                                                                            rbruce
                                                                                                                                            Participant

                                                                                                                                              Karen,

                                                                                                                                              I have been told that there are combo trials starting up pretty soon that will include anti-pd-1 and other drugs.  I've also heard that anti-pd-1 may be approved fairly soon for other cancer types and be available off label for melanoma.  Not sure why, buyt maybe it's been in trials for other cancers longer?? Maybe that is what Dr. B at MD Anderson is talking about?  Have you or your Dr. tried reaching out to BMS or Merck and asking for a compassionate use?

                                                                                                                                              Robert

                                                                                                                                              rbruce
                                                                                                                                              Participant

                                                                                                                                                Karen,

                                                                                                                                                I have been told that there are combo trials starting up pretty soon that will include anti-pd-1 and other drugs.  I've also heard that anti-pd-1 may be approved fairly soon for other cancer types and be available off label for melanoma.  Not sure why, buyt maybe it's been in trials for other cancers longer?? Maybe that is what Dr. B at MD Anderson is talking about?  Have you or your Dr. tried reaching out to BMS or Merck and asking for a compassionate use?

                                                                                                                                                Robert

                                                                                                                                                NYKaren
                                                                                                                                                Participant
                                                                                                                                                  Hi Robert,
                                                                                                                                                  I was told at 1.5, more like 2 years. Do you think maybe sooner? I’ve exhausted all options and am (along w/my doc) currently hoping chemo keeps me stable until there’s a PD1 trial I can get into. Or if it’s FDA approved.
                                                                                                                                                  Karen
                                                                                                                                                  NYKaren
                                                                                                                                                  Participant
                                                                                                                                                    Hi Robert,
                                                                                                                                                    I was told at 1.5, more like 2 years. Do you think maybe sooner? I’ve exhausted all options and am (along w/my doc) currently hoping chemo keeps me stable until there’s a PD1 trial I can get into. Or if it’s FDA approved.
                                                                                                                                                    Karen
                                                                                                                                                    rbruce
                                                                                                                                                    Participant

                                                                                                                                                      Anti-pd1 is only in clinical trials. BMS is trying to fast track their version to phase 3 which has been in trials for a few years now. Merck's version began around the 1st of this year and is still years away from FDA approval.  With the successes reported at ASCO this year of the BMS drug, and the early reports of success with Merck's, I believe the industry will speed these trials along.  Watch for combo trials that are starting up.  After failed biochemo and failed pi3k, anti-pd1 is working for me with minimal side effects. 40% tumor reduction at 12 week scans! Had my 24 week pet/ct yesterday and waiting for results.  For those whose tumors express the pd ligand, this is a game changer. I was diagnosed stage 4 in March of 2011, braf negative, nras q61+. 

                                                                                                                                                    killmel
                                                                                                                                                    Participant

                                                                                                                                                      Hi,

                                                                                                                                                       

                                                                                                                                                      When you say anti-pd1 drug is (available) coming,are you talking about a clinical trial???? If so,who is the sponsor???

                                                                                                                                                       

                                                                                                                                                      Thanks for answering my question.

                                                                                                                                                       

                                                                                                                                                      Amy

                                                                                                                                                      killmel
                                                                                                                                                      Participant

                                                                                                                                                        Hi,

                                                                                                                                                         

                                                                                                                                                        When you say anti-pd1 drug is (available) coming,are you talking about a clinical trial???? If so,who is the sponsor???

                                                                                                                                                         

                                                                                                                                                        Thanks for answering my question.

                                                                                                                                                         

                                                                                                                                                        Amy

                                                                                                                                                        Becky C.
                                                                                                                                                        Participant

                                                                                                                                                          Hello. I am Becky C. from Jackson, Ms. I am also waiting to hear about the anti-pd1 trial. I met with Dr. Hu from MDA about two weeks ago. I was told it was coming up in May. Everything I have read talks about great results. Keeping my fingers crossed.

                                                                                                                                                          Becky C.
                                                                                                                                                          Participant

                                                                                                                                                            Hello. I am Becky C. from Jackson, Ms. I am also waiting to hear about the anti-pd1 trial. I met with Dr. Hu from MDA about two weeks ago. I was told it was coming up in May. Everything I have read talks about great results. Keeping my fingers crossed.

                                                                                                                                                            Becky C.
                                                                                                                                                            Participant

                                                                                                                                                              Hello. I am Becky C. from Jackson, Ms. I am also waiting to hear about the anti-pd1 trial. I met with Dr. Hu from MDA about two weeks ago. I was told it was coming up in May. Everything I have read talks about great results. Keeping my fingers crossed.

                                                                                                                                                              caseym
                                                                                                                                                              Participant

                                                                                                                                                                Hi Everyone,

                                                                                                                                                                My mum is number 3 on the second round of the PD1 clinical trial in Australia.

                                                                                                                                                                I was wondering if anyone has any information about being on this trial, sideaffects and success rate?

                                                                                                                                                                I want to do as much as I can for my mum any help would be great.

                                                                                                                                                                Thank you Casey

                                                                                                                                                                caseym
                                                                                                                                                                Participant

                                                                                                                                                                  Hi Everyone,

                                                                                                                                                                  My mum is number 3 on the second round of the PD1 clinical trial in Australia.

                                                                                                                                                                  I was wondering if anyone has any information about being on this trial, sideaffects and success rate?

                                                                                                                                                                  I want to do as much as I can for my mum any help would be great.

                                                                                                                                                                  Thank you Casey

                                                                                                                                                                  caseym
                                                                                                                                                                  Participant

                                                                                                                                                                    Hi Everyone,

                                                                                                                                                                    My mum is number 3 on the second round of the PD1 clinical trial in Australia.

                                                                                                                                                                    I was wondering if anyone has any information about being on this trial, sideaffects and success rate?

                                                                                                                                                                    I want to do as much as I can for my mum any help would be great.

                                                                                                                                                                    Thank you Casey

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