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IPI/Yervoy success stories please….

Forums General Melanoma Community IPI/Yervoy success stories please….

  • Post
    MeNDave
    Participant

      Given the rate of growth of Dave's cancer in the past 6 weeks, he is leaning towards starting Yervoy Wednesday.  We have been in contact with Univ of Pitt regarding the MK-3475 trial.  The trial nurse (who was wonderful) said that only 1 seat was open on the current trial, and that was for a post IPI patient.  They did receive FDA approval for expanding the trial, so seats will be opening up for both post and pre-treated IPI patients at all of their investigational sites, but she is not sure when, and we don't have time to wait.  Given Dave's reaction to the

      Given the rate of growth of Dave's cancer in the past 6 weeks, he is leaning towards starting Yervoy Wednesday.  We have been in contact with Univ of Pitt regarding the MK-3475 trial.  The trial nurse (who was wonderful) said that only 1 seat was open on the current trial, and that was for a post IPI patient.  They did receive FDA approval for expanding the trial, so seats will be opening up for both post and pre-treated IPI patients at all of their investigational sites, but she is not sure when, and we don't have time to wait.  Given Dave's reaction to the IL-2 with the eye problem, I'm not even sure that he would qualify.  However, if he completes IPI and progresses (and has no eye issues) we can always try to get in then.  We've also brought up the issue of radiation with IPI, and his oncologist agreed that if he wasn't responding, he would do it.  Memorial/Sloan Kettering wouldn't even consider Dave because we aren't within 2 hours of the hospital, unless it is coordinated with his onc.  And given the 4 week washout period, we just don't want to wait that long.

      In the mean time, if I could get some of you to share your success stories with IPI that I could pass on to Dave I would appreciate it.  He is very worried about this next stage of treatment, and I would like to reassure him that people DO respond to this.

      I am trying to keep his attitiude positive, and need all the ammunition I can get – thanks to all of you for your help,

       

      Maria

    Viewing 23 reply threads
    • Replies
        jim Breitfeller
        Participant
          Maria,
          If you go to my blog “melanoma missionary”,and do a search for the magic bullet, you should find a paper I wrote called melanoma and the magic bullet ( monoclonal anti bodies). My story starts on page 16.

          I would give you the link but I am not at my computer.

          You may want look it my older posts on this forum.

          Best regards,

          Jimmy b

          jim Breitfeller
          Participant
            Maria,
            If you go to my blog “melanoma missionary”,and do a search for the magic bullet, you should find a paper I wrote called melanoma and the magic bullet ( monoclonal anti bodies). My story starts on page 16.

            I would give you the link but I am not at my computer.

            You may want look it my older posts on this forum.

            Best regards,

            Jimmy b

            jim Breitfeller
            Participant
              Maria,
              If you go to my blog “melanoma missionary”,and do a search for the magic bullet, you should find a paper I wrote called melanoma and the magic bullet ( monoclonal anti bodies). My story starts on page 16.

              I would give you the link but I am not at my computer.

              You may want look it my older posts on this forum.

              Best regards,

              Jimmy b

              jmmm
              Participant
                My husband started Ipi last May-July just after the FDA approval with 2 tumors…a large, inoperable near his heart and a big one in his GI tract causing bleeding. He had minimal to no side effects. By his 2nd infusion, he was no longer losing blood (the GI tumor was already shrinking). At his 14 week scan, the GI tumor was completely gone, the heart tumor was dead and half the size. There was one new, small tumor in his abdomin, so he was proclaimed a “partial responder.”. He had progression in October and started Zelboraf. His doctor believes the two are working together at this point and his is currently stable with slight regression and feeling great. Ipi saved his life. I know his isn’t a typical reaction…most have a delayed reaction and side effects, but for him it worked miracles. Best of luck to you.
                jmmm
                Participant
                  My husband started Ipi last May-July just after the FDA approval with 2 tumors…a large, inoperable near his heart and a big one in his GI tract causing bleeding. He had minimal to no side effects. By his 2nd infusion, he was no longer losing blood (the GI tumor was already shrinking). At his 14 week scan, the GI tumor was completely gone, the heart tumor was dead and half the size. There was one new, small tumor in his abdomin, so he was proclaimed a “partial responder.”. He had progression in October and started Zelboraf. His doctor believes the two are working together at this point and his is currently stable with slight regression and feeling great. Ipi saved his life. I know his isn’t a typical reaction…most have a delayed reaction and side effects, but for him it worked miracles. Best of luck to you.
                  jmmm
                  Participant
                    My husband started Ipi last May-July just after the FDA approval with 2 tumors…a large, inoperable near his heart and a big one in his GI tract causing bleeding. He had minimal to no side effects. By his 2nd infusion, he was no longer losing blood (the GI tumor was already shrinking). At his 14 week scan, the GI tumor was completely gone, the heart tumor was dead and half the size. There was one new, small tumor in his abdomin, so he was proclaimed a “partial responder.”. He had progression in October and started Zelboraf. His doctor believes the two are working together at this point and his is currently stable with slight regression and feeling great. Ipi saved his life. I know his isn’t a typical reaction…most have a delayed reaction and side effects, but for him it worked miracles. Best of luck to you.
                    Gene_S
                    Participant

                      My husband is on the Ipi Trial with GM-CSF and if you read his page you will read all about his 67% regression.  He goes for another of his maintenance infusion on April 6th.

                      He had only small reactions that he call liveable as long as it is doing its job with the mel.

                      Judy (loving wife and caregiver of Gene Stage IV)

                      Gene_S
                      Participant

                        My husband is on the Ipi Trial with GM-CSF and if you read his page you will read all about his 67% regression.  He goes for another of his maintenance infusion on April 6th.

                        He had only small reactions that he call liveable as long as it is doing its job with the mel.

                        Judy (loving wife and caregiver of Gene Stage IV)

                        Gene_S
                        Participant

                          My husband is on the Ipi Trial with GM-CSF and if you read his page you will read all about his 67% regression.  He goes for another of his maintenance infusion on April 6th.

                          He had only small reactions that he call liveable as long as it is doing its job with the mel.

                          Judy (loving wife and caregiver of Gene Stage IV)

                          killmel
                          Participant

                            I am sorry that you have limited options.

                            However, if you are lucky, IPI has a 20-30% success rate.Remember that IPI takes time to work and Dave might get more growth/tumorsbefore IPI kicks in. Some people even get Brain Mets while on IPI.It is difficult to wait for results but such is the way IPI works.

                            There has been a few people with complete response but they are the minority.  To not be disappointed and have anxiety taking IPI, I think that you & Dave must look at the response rate and be ready for side effects.Accept the pros & cons of IPI and do not look back on your decision.

                            Please  understand the side effects.Yervoy.com list the side effects. It is crucial that you understand the side effects so that you can contact the DR. immediately if Dave get symptoms.

                            Good Luck to both of you.

                            Jim

                            killmel
                            Participant

                              I am sorry that you have limited options.

                              However, if you are lucky, IPI has a 20-30% success rate.Remember that IPI takes time to work and Dave might get more growth/tumorsbefore IPI kicks in. Some people even get Brain Mets while on IPI.It is difficult to wait for results but such is the way IPI works.

                              There has been a few people with complete response but they are the minority.  To not be disappointed and have anxiety taking IPI, I think that you & Dave must look at the response rate and be ready for side effects.Accept the pros & cons of IPI and do not look back on your decision.

                              Please  understand the side effects.Yervoy.com list the side effects. It is crucial that you understand the side effects so that you can contact the DR. immediately if Dave get symptoms.

                              Good Luck to both of you.

                              Jim

                              killmel
                              Participant

                                I am sorry that you have limited options.

                                However, if you are lucky, IPI has a 20-30% success rate.Remember that IPI takes time to work and Dave might get more growth/tumorsbefore IPI kicks in. Some people even get Brain Mets while on IPI.It is difficult to wait for results but such is the way IPI works.

                                There has been a few people with complete response but they are the minority.  To not be disappointed and have anxiety taking IPI, I think that you & Dave must look at the response rate and be ready for side effects.Accept the pros & cons of IPI and do not look back on your decision.

                                Please  understand the side effects.Yervoy.com list the side effects. It is crucial that you understand the side effects so that you can contact the DR. immediately if Dave get symptoms.

                                Good Luck to both of you.

                                Jim

                                Rocco
                                Participant

                                  Hi Maria and Dave,

                                  I was dx'ed Stage IV in 2005 and have had several types of treatment: Surgery, radiation, IL-2, trial for Adoptive Cell transfer – all with slight stoppage of growth.  I entered into the IpI trial (MDX-010)in Aug 2008 and by November 2008 heard that I had a 70+% reduction in my tumors.  Last dose of ipi was in Feb 2009.  Had eye issues/reaction which were treated with heavy duty steroids.  Have been NED since Feb 2009 and my eyes today are just fine.   As you know your response my vary, but for me ipi did the trick.

                                  These decisions on treatment are not easy – I wish you well in yours!

                                  Hang in there!

                                  -Rocco, IV in 2005, NED since 2009 due to IpI

                                  Rocco
                                  Participant

                                    Hi Maria and Dave,

                                    I was dx'ed Stage IV in 2005 and have had several types of treatment: Surgery, radiation, IL-2, trial for Adoptive Cell transfer – all with slight stoppage of growth.  I entered into the IpI trial (MDX-010)in Aug 2008 and by November 2008 heard that I had a 70+% reduction in my tumors.  Last dose of ipi was in Feb 2009.  Had eye issues/reaction which were treated with heavy duty steroids.  Have been NED since Feb 2009 and my eyes today are just fine.   As you know your response my vary, but for me ipi did the trick.

                                    These decisions on treatment are not easy – I wish you well in yours!

                                    Hang in there!

                                    -Rocco, IV in 2005, NED since 2009 due to IpI

                                    Rocco
                                    Participant

                                      Hi Maria and Dave,

                                      I was dx'ed Stage IV in 2005 and have had several types of treatment: Surgery, radiation, IL-2, trial for Adoptive Cell transfer – all with slight stoppage of growth.  I entered into the IpI trial (MDX-010)in Aug 2008 and by November 2008 heard that I had a 70+% reduction in my tumors.  Last dose of ipi was in Feb 2009.  Had eye issues/reaction which were treated with heavy duty steroids.  Have been NED since Feb 2009 and my eyes today are just fine.   As you know your response my vary, but for me ipi did the trick.

                                      These decisions on treatment are not easy – I wish you well in yours!

                                      Hang in there!

                                      -Rocco, IV in 2005, NED since 2009 due to IpI

                                      killmel
                                      Participant

                                        If it were me, I would travel to where ever I had to for the Merck pd1 trial. I would call every site location for this trial.

                                        Dr. Ribas at UCLA is still recruiting in Los Angeles (310 206-3928)

                                        I would not take the chance with IPI because the response could take a long time.

                                        People have reported a complete & partial reponse on Merck PD1 after only 12 weeks on the trial. Plus the side effects are mild compared to IPI. Eye problems are a side effect on IPI so Dave's history of eye problems might be concerning.

                                        Good Luck with your decision. It mighthelp by thinking that if this is the last treatment for Dave, what would be your 1st choice of treatment, then no matter what it takes, get Dave that drug.

                                        Bless You Both

                                        killmel
                                        Participant

                                          If it were me, I would travel to where ever I had to for the Merck pd1 trial. I would call every site location for this trial.

                                          Dr. Ribas at UCLA is still recruiting in Los Angeles (310 206-3928)

                                          I would not take the chance with IPI because the response could take a long time.

                                          People have reported a complete & partial reponse on Merck PD1 after only 12 weeks on the trial. Plus the side effects are mild compared to IPI. Eye problems are a side effect on IPI so Dave's history of eye problems might be concerning.

                                          Good Luck with your decision. It mighthelp by thinking that if this is the last treatment for Dave, what would be your 1st choice of treatment, then no matter what it takes, get Dave that drug.

                                          Bless You Both

                                          killmel
                                          Participant

                                            If it were me, I would travel to where ever I had to for the Merck pd1 trial. I would call every site location for this trial.

                                            Dr. Ribas at UCLA is still recruiting in Los Angeles (310 206-3928)

                                            I would not take the chance with IPI because the response could take a long time.

                                            People have reported a complete & partial reponse on Merck PD1 after only 12 weeks on the trial. Plus the side effects are mild compared to IPI. Eye problems are a side effect on IPI so Dave's history of eye problems might be concerning.

                                            Good Luck with your decision. It mighthelp by thinking that if this is the last treatment for Dave, what would be your 1st choice of treatment, then no matter what it takes, get Dave that drug.

                                            Bless You Both

                                            Jim M.
                                            Participant

                                              I was diagnosed stage 3C in in 2007 and had a lymph node dissection at the right axillary in 11/07. Local radiation followed ( 30 treatments ). After recovering I decided on a clinical trial with Ipi (Yervoy). I was on Ipi from 3/08 to 10/08. I had no tumor burden put Ipi boosted my immune system at least 5 times over baseline ( based on the increase of T cells). I am on a steroid as a hormone replacement as my reved up immune system attacked the pituitary gland. I am now NED 4 years, 5 months.

                                               God Bless,

                                               Jim M.

                                              Jim M.
                                              Participant

                                                I was diagnosed stage 3C in in 2007 and had a lymph node dissection at the right axillary in 11/07. Local radiation followed ( 30 treatments ). After recovering I decided on a clinical trial with Ipi (Yervoy). I was on Ipi from 3/08 to 10/08. I had no tumor burden put Ipi boosted my immune system at least 5 times over baseline ( based on the increase of T cells). I am on a steroid as a hormone replacement as my reved up immune system attacked the pituitary gland. I am now NED 4 years, 5 months.

                                                 God Bless,

                                                 Jim M.

                                                Jim M.
                                                Participant

                                                  I was diagnosed stage 3C in in 2007 and had a lymph node dissection at the right axillary in 11/07. Local radiation followed ( 30 treatments ). After recovering I decided on a clinical trial with Ipi (Yervoy). I was on Ipi from 3/08 to 10/08. I had no tumor burden put Ipi boosted my immune system at least 5 times over baseline ( based on the increase of T cells). I am on a steroid as a hormone replacement as my reved up immune system attacked the pituitary gland. I am now NED 4 years, 5 months.

                                                   God Bless,

                                                   Jim M.

                                                  LindyVA
                                                  Participant

                                                    My husband was diagnosed with stage IV early 2010 with mets in the lungs, pancreas and brain and possibly in the heart. (I believed the one in the heart was a blood clot due to suspending blood thinner for his surgeries and as it turned out I was correct) His primary was a very large tumor in his cheek with was operated and removed in 2006. His GP had been freezing this spot for 6 years telling him it was nothing until I talked into seeing a dermatologist who immediately know it was melanoma.  It returned again in 2009 and was removed again.  In Jan 2010 he had the upper lobe of lung removed for mets and 6 months latter Aug 2011 have Gamma Knife for brain mets. During all this time his oncologist never mentioned any treatments or suggestioned any adjacent care. My husand saw him every 8weeks for almost 6 years and he never had any idea what to do to slow the growth…just wait and see. I asked him about several options and he said my husband was too old  (72 yrs old) and dying from melanoma would not be so bad he would just sleep a lot.

                                                     At the time he was otherwise perfectly healthy, playing golf, maintaining 3 acres of lawns and coaching high school basketball. I did not like his answer and also found that he had misrepresented several times to us such as saying he was the melanoma expert for the whole eastern USA. So, I started doing research and found out about yervoy, I retired from senior living job and spent full time researching and looking for a doctor that would administer the yervoy. The one I found had no experience but agreed to move forward.

                                                     I was sooo confident that he would be a responder. We continue our normal life as he went through the 4 infusions. I spent every night on this website learning and gaining trust. I recorded his ACL’s even thought the oncologist told me it had nothing to do with the drug’s success……but I trusted the warriors and this website and knew after the second treatment we had positive signs…….and at twelve weeks we were given the news…..no signs of melanoma activity. Smaller tumors or tumors to small to see. (By the way he had gamma knife surgery again just before the fourth treatment as a percaustion incase the new mets got too big for gamma knife surgery)  I think the doctor was more surprised by the response then we were and is now promoting himself as melanoma expert.  Side effects were very few and he had normal lifestyle. The rash came after the second treatment (this was my second positive sign) Now the rash is horrible…all over his entire body and he is up all night ithing. Wish we had a better solution then Sarna or Calamine lotions….not working

                                                    .  If your husband is a responder it will be nothing short of a miracle and I pray for you that he is. I have no idea of my husbands’ future but for know our 6 children, their spouses and our 11 grandchildren have more time with this lovely, gentle man…my husband.  I have waited a long time to post on this valuable resource and thank all the participants for their information, hope, inspiration and firsthand knowledge. Linda

                                                    LindyVA
                                                    Participant

                                                      My husband was diagnosed with stage IV early 2010 with mets in the lungs, pancreas and brain and possibly in the heart. (I believed the one in the heart was a blood clot due to suspending blood thinner for his surgeries and as it turned out I was correct) His primary was a very large tumor in his cheek with was operated and removed in 2006. His GP had been freezing this spot for 6 years telling him it was nothing until I talked into seeing a dermatologist who immediately know it was melanoma.  It returned again in 2009 and was removed again.  In Jan 2010 he had the upper lobe of lung removed for mets and 6 months latter Aug 2011 have Gamma Knife for brain mets. During all this time his oncologist never mentioned any treatments or suggestioned any adjacent care. My husand saw him every 8weeks for almost 6 years and he never had any idea what to do to slow the growth…just wait and see. I asked him about several options and he said my husband was too old  (72 yrs old) and dying from melanoma would not be so bad he would just sleep a lot.

                                                       At the time he was otherwise perfectly healthy, playing golf, maintaining 3 acres of lawns and coaching high school basketball. I did not like his answer and also found that he had misrepresented several times to us such as saying he was the melanoma expert for the whole eastern USA. So, I started doing research and found out about yervoy, I retired from senior living job and spent full time researching and looking for a doctor that would administer the yervoy. The one I found had no experience but agreed to move forward.

                                                       I was sooo confident that he would be a responder. We continue our normal life as he went through the 4 infusions. I spent every night on this website learning and gaining trust. I recorded his ACL’s even thought the oncologist told me it had nothing to do with the drug’s success……but I trusted the warriors and this website and knew after the second treatment we had positive signs…….and at twelve weeks we were given the news…..no signs of melanoma activity. Smaller tumors or tumors to small to see. (By the way he had gamma knife surgery again just before the fourth treatment as a percaustion incase the new mets got too big for gamma knife surgery)  I think the doctor was more surprised by the response then we were and is now promoting himself as melanoma expert.  Side effects were very few and he had normal lifestyle. The rash came after the second treatment (this was my second positive sign) Now the rash is horrible…all over his entire body and he is up all night ithing. Wish we had a better solution then Sarna or Calamine lotions….not working

                                                      .  If your husband is a responder it will be nothing short of a miracle and I pray for you that he is. I have no idea of my husbands’ future but for know our 6 children, their spouses and our 11 grandchildren have more time with this lovely, gentle man…my husband.  I have waited a long time to post on this valuable resource and thank all the participants for their information, hope, inspiration and firsthand knowledge. Linda

                                                      LindyVA
                                                      Participant

                                                        My husband was diagnosed with stage IV early 2010 with mets in the lungs, pancreas and brain and possibly in the heart. (I believed the one in the heart was a blood clot due to suspending blood thinner for his surgeries and as it turned out I was correct) His primary was a very large tumor in his cheek with was operated and removed in 2006. His GP had been freezing this spot for 6 years telling him it was nothing until I talked into seeing a dermatologist who immediately know it was melanoma.  It returned again in 2009 and was removed again.  In Jan 2010 he had the upper lobe of lung removed for mets and 6 months latter Aug 2011 have Gamma Knife for brain mets. During all this time his oncologist never mentioned any treatments or suggestioned any adjacent care. My husand saw him every 8weeks for almost 6 years and he never had any idea what to do to slow the growth…just wait and see. I asked him about several options and he said my husband was too old  (72 yrs old) and dying from melanoma would not be so bad he would just sleep a lot.

                                                         At the time he was otherwise perfectly healthy, playing golf, maintaining 3 acres of lawns and coaching high school basketball. I did not like his answer and also found that he had misrepresented several times to us such as saying he was the melanoma expert for the whole eastern USA. So, I started doing research and found out about yervoy, I retired from senior living job and spent full time researching and looking for a doctor that would administer the yervoy. The one I found had no experience but agreed to move forward.

                                                         I was sooo confident that he would be a responder. We continue our normal life as he went through the 4 infusions. I spent every night on this website learning and gaining trust. I recorded his ACL’s even thought the oncologist told me it had nothing to do with the drug’s success……but I trusted the warriors and this website and knew after the second treatment we had positive signs…….and at twelve weeks we were given the news…..no signs of melanoma activity. Smaller tumors or tumors to small to see. (By the way he had gamma knife surgery again just before the fourth treatment as a percaustion incase the new mets got too big for gamma knife surgery)  I think the doctor was more surprised by the response then we were and is now promoting himself as melanoma expert.  Side effects were very few and he had normal lifestyle. The rash came after the second treatment (this was my second positive sign) Now the rash is horrible…all over his entire body and he is up all night ithing. Wish we had a better solution then Sarna or Calamine lotions….not working

                                                        .  If your husband is a responder it will be nothing short of a miracle and I pray for you that he is. I have no idea of my husbands’ future but for know our 6 children, their spouses and our 11 grandchildren have more time with this lovely, gentle man…my husband.  I have waited a long time to post on this valuable resource and thank all the participants for their information, hope, inspiration and firsthand knowledge. Linda

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