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So confused!

Forums General Melanoma Community So confused!

  • Post
    mwcollins
    Participant

      Many of you know of my husband, Kevin (kpcollins31). He posts frequently and is very actively researching this disease that has brought us all together. Well, in one weeks time he will have his PET scan to determine if the thickness in his small bowel is a met or possibly something else. I am hoping and praying with every ounce of my being that it is just a resurfacing of his diverticulitis, but the possibility remains. . . Anyhow, there is a nurse on Kevin's team that is in charge of the treatment plans, and basically the facilitator for communication. She and I had a wonderful conversation this morning. She was not sugar coating anything, but at the same time telling me that she can see Kevin being here for many years to come! Such encouragement from a medical professional! She went into details with me about Yervoy and the success that she has seen with it which had me very encouraged as well. Well, Kevin comes home and says that he did more research on Yervoy and said that the studies have shown that 46% of patients live for a whopping 1 year. His thoughts are that he wants to get into a clinical trial that can be even better than Yervoy. I can't and won't accept having my husband for just one more year. Our 4 year old will have little to no memories of his daddy, and that is just unacceptable to me. My question to all of you out there is about Yervoy. For those who have been on it, is it successful (for more than 1 year), are the side effects as bad as he thinks, is the nurse just trying to sell the drug that her hospital bought into? I am so confused! I just want this roller coaster to level out and get him healthy!

    Viewing 14 reply threads
    • Replies
        Pathuttenga
        Participant

          From what I understand yervoy works differently in everyone

          my son just finished a 12 week session and his recent pet scan did not come back good

          tumors larger and now spots on spleen and liver

          there is a new clinical trial PDL-1, we just met with doctors today for evaluation, now have to wait for a week to find out if he qualifies

          good luck in whatever you decide, it is all so confusing and only so much our there

           

            kylez
            Participant

              Wishing for your son that he will qualify for that PDL-1 trial.  

              kylez
              Participant

                Wishing for your son that he will qualify for that PDL-1 trial.  

                arthurjedi007
                Participant

                  My Dr said if I increase after ipi there's the anti-PD1 nivolumab trial only for people who have increased on ipi. But for him increase means 2 scans. The 1st scan is 2 weeks after last ipi dose then 8 weeks after that if still shows increase because the 1st scan can be a false increase due to what they call ipi swelling the tumor as it fights it.

                  My Dr said the other nivolumab trials have closed. There's the genentec anti-PD1 trials. There's the PDL-1 trials. Then there's several less known but maybe affective treatments as well usually only available at the biggest cancer places.

                  Also someone else said eat healthy to keep the immune system up is important which I also believe is very true.

                  ArtieV

                  arthurjedi007
                  Participant

                    My Dr said if I increase after ipi there's the anti-PD1 nivolumab trial only for people who have increased on ipi. But for him increase means 2 scans. The 1st scan is 2 weeks after last ipi dose then 8 weeks after that if still shows increase because the 1st scan can be a false increase due to what they call ipi swelling the tumor as it fights it.

                    My Dr said the other nivolumab trials have closed. There's the genentec anti-PD1 trials. There's the PDL-1 trials. Then there's several less known but maybe affective treatments as well usually only available at the biggest cancer places.

                    Also someone else said eat healthy to keep the immune system up is important which I also believe is very true.

                    ArtieV

                    arthurjedi007
                    Participant

                      My Dr said if I increase after ipi there's the anti-PD1 nivolumab trial only for people who have increased on ipi. But for him increase means 2 scans. The 1st scan is 2 weeks after last ipi dose then 8 weeks after that if still shows increase because the 1st scan can be a false increase due to what they call ipi swelling the tumor as it fights it.

                      My Dr said the other nivolumab trials have closed. There's the genentec anti-PD1 trials. There's the PDL-1 trials. Then there's several less known but maybe affective treatments as well usually only available at the biggest cancer places.

                      Also someone else said eat healthy to keep the immune system up is important which I also believe is very true.

                      ArtieV

                      kylez
                      Participant

                        Wishing for your son that he will qualify for that PDL-1 trial.  

                      Pathuttenga
                      Participant

                        From what I understand yervoy works differently in everyone

                        my son just finished a 12 week session and his recent pet scan did not come back good

                        tumors larger and now spots on spleen and liver

                        there is a new clinical trial PDL-1, we just met with doctors today for evaluation, now have to wait for a week to find out if he qualifies

                        good luck in whatever you decide, it is all so confusing and only so much our there

                         

                        Pathuttenga
                        Participant

                          From what I understand yervoy works differently in everyone

                          my son just finished a 12 week session and his recent pet scan did not come back good

                          tumors larger and now spots on spleen and liver

                          there is a new clinical trial PDL-1, we just met with doctors today for evaluation, now have to wait for a week to find out if he qualifies

                          good luck in whatever you decide, it is all so confusing and only so much our there

                           

                          kylez
                          Participant

                            When I was about to begin on Yervoy I remember discounting whether it might work. Anti-PD1 was already getting a lot of 'buzz', but I could not get into one of those trials. 

                            The "1 year" statistic cited by Kevin's nurse doesn't tell the whole story, which is the statistical "long tail" for overall survival. See https://www.hcp.yervoy.com/Pages/efficacy/efficacy-os-in-total-population.aspx. Less and less people stop responding as more time goes forward, until the change in survival becomes virtually unchanging, at least as far forward as they've been able to collect data for. 

                            Hope that helps. If it were me now I would probably still try to get into an anti-PD1 trial like I wanted to before in 2011. But my oncologist believes I am almost certainly having a durable response with Yervoy; summer 2014 would be 3 years for me.

                            – Kyle

                              JC
                              Participant

                                What does this mean?  "Less and less people stop responding as more time goes forward, until the change in survival becomes virtually unchanging, at least as far forward as they've been able to collect data for. "

                                JC
                                Participant

                                  What does this mean?  "Less and less people stop responding as more time goes forward, until the change in survival becomes virtually unchanging, at least as far forward as they've been able to collect data for. "

                                  POW
                                  Participant

                                    Hi, Megan-

                                     

                                    What Jerry means is that based on the results of the Phase 3 trial, 46% of the patients were alive after one year, 27% after 2 years, 20% after 3 years, 20% after 4 years, 20% after 5 years, etc. (These numbers are not exact.) The point is that people who survive 2 years on ipi are very likely to live many more years. The survival curves do not go straight down to zero. 

                                    I am sorry to have to tell you this, Megan, but the emotional roller coaster you are on is not going to stop. That is one of the most stressful and debilitating aspects of melanoma– not just for the patient but for the whole family. You just never know whether or not any given treatment is working. When you get a scan that shows it is working, you are euphoric. But that same treatment could stop working tomorrow. Every ache and pain and fever makes you wonder whether the melanoma has come back so you are constantly worried and always researching for what treatment you could try if your current treatment fails. The whole thing is emotionally exhausting. My heart goes out to you.

                                    The people who seem to handle this best are those who can learn to maintain a positive mental attitude. They are sure that this new treatment–whatever it is– is going to work. They believe that if and when this treatment fails, there will be another treatment available that will work even better. And meanwhile, they are determined to live their lives fully and enjoy every day to the max. This is a hard mental adjustment to make, but if you can make that adjustment the emotional roller coaster will level out a bit. 

                                    As Jerry said, there is no "cure" for melanoma yet. However, just 2 or 3 years ago there was virtually no hope for anyone with Stage IV to live more than a year. Now there is hope. Lots of hope. Several patients here have tried and eventually failed 2 or 3 treatments and finally–FINALLY– found a treatment that worked for them for a long time. Many, many more patients are living 3, 5, 10 years and still going strong. We don't know yet how long these successes will last– maybe forever and the patient will die of old age rather than melanoma. 

                                    Your concerns are perfectly normal and reasonable. Unfortunately, you and Kevin are both going to have to learn to live with uncertainty for a long time to come– at least until he is 5 years NED. You can help him by making sure he eats a healthful, balanced diet and gets regular moderate exercise. Keeping the immune system strong is very important in fighting melanoma. Kevin has good reason to be optimistic that he will eventually beat this disease. Don't let melanoma destroy your lives while he is busy beating the disease itself.

                                     

                                     

                                     

                                    POW
                                    Participant

                                      Hi, Megan-

                                       

                                      What Jerry means is that based on the results of the Phase 3 trial, 46% of the patients were alive after one year, 27% after 2 years, 20% after 3 years, 20% after 4 years, 20% after 5 years, etc. (These numbers are not exact.) The point is that people who survive 2 years on ipi are very likely to live many more years. The survival curves do not go straight down to zero. 

                                      I am sorry to have to tell you this, Megan, but the emotional roller coaster you are on is not going to stop. That is one of the most stressful and debilitating aspects of melanoma– not just for the patient but for the whole family. You just never know whether or not any given treatment is working. When you get a scan that shows it is working, you are euphoric. But that same treatment could stop working tomorrow. Every ache and pain and fever makes you wonder whether the melanoma has come back so you are constantly worried and always researching for what treatment you could try if your current treatment fails. The whole thing is emotionally exhausting. My heart goes out to you.

                                      The people who seem to handle this best are those who can learn to maintain a positive mental attitude. They are sure that this new treatment–whatever it is– is going to work. They believe that if and when this treatment fails, there will be another treatment available that will work even better. And meanwhile, they are determined to live their lives fully and enjoy every day to the max. This is a hard mental adjustment to make, but if you can make that adjustment the emotional roller coaster will level out a bit. 

                                      As Jerry said, there is no "cure" for melanoma yet. However, just 2 or 3 years ago there was virtually no hope for anyone with Stage IV to live more than a year. Now there is hope. Lots of hope. Several patients here have tried and eventually failed 2 or 3 treatments and finally–FINALLY– found a treatment that worked for them for a long time. Many, many more patients are living 3, 5, 10 years and still going strong. We don't know yet how long these successes will last– maybe forever and the patient will die of old age rather than melanoma. 

                                      Your concerns are perfectly normal and reasonable. Unfortunately, you and Kevin are both going to have to learn to live with uncertainty for a long time to come– at least until he is 5 years NED. You can help him by making sure he eats a healthful, balanced diet and gets regular moderate exercise. Keeping the immune system strong is very important in fighting melanoma. Kevin has good reason to be optimistic that he will eventually beat this disease. Don't let melanoma destroy your lives while he is busy beating the disease itself.

                                       

                                       

                                       

                                      POW
                                      Participant

                                        Hi, Megan-

                                         

                                        What Jerry means is that based on the results of the Phase 3 trial, 46% of the patients were alive after one year, 27% after 2 years, 20% after 3 years, 20% after 4 years, 20% after 5 years, etc. (These numbers are not exact.) The point is that people who survive 2 years on ipi are very likely to live many more years. The survival curves do not go straight down to zero. 

                                        I am sorry to have to tell you this, Megan, but the emotional roller coaster you are on is not going to stop. That is one of the most stressful and debilitating aspects of melanoma– not just for the patient but for the whole family. You just never know whether or not any given treatment is working. When you get a scan that shows it is working, you are euphoric. But that same treatment could stop working tomorrow. Every ache and pain and fever makes you wonder whether the melanoma has come back so you are constantly worried and always researching for what treatment you could try if your current treatment fails. The whole thing is emotionally exhausting. My heart goes out to you.

                                        The people who seem to handle this best are those who can learn to maintain a positive mental attitude. They are sure that this new treatment–whatever it is– is going to work. They believe that if and when this treatment fails, there will be another treatment available that will work even better. And meanwhile, they are determined to live their lives fully and enjoy every day to the max. This is a hard mental adjustment to make, but if you can make that adjustment the emotional roller coaster will level out a bit. 

                                        As Jerry said, there is no "cure" for melanoma yet. However, just 2 or 3 years ago there was virtually no hope for anyone with Stage IV to live more than a year. Now there is hope. Lots of hope. Several patients here have tried and eventually failed 2 or 3 treatments and finally–FINALLY– found a treatment that worked for them for a long time. Many, many more patients are living 3, 5, 10 years and still going strong. We don't know yet how long these successes will last– maybe forever and the patient will die of old age rather than melanoma. 

                                        Your concerns are perfectly normal and reasonable. Unfortunately, you and Kevin are both going to have to learn to live with uncertainty for a long time to come– at least until he is 5 years NED. You can help him by making sure he eats a healthful, balanced diet and gets regular moderate exercise. Keeping the immune system strong is very important in fighting melanoma. Kevin has good reason to be optimistic that he will eventually beat this disease. Don't let melanoma destroy your lives while he is busy beating the disease itself.

                                         

                                         

                                         

                                        BrianP
                                        Participant

                                          ^^^^^^^^^^^^^

                                          Wish we had a "like" feature MPIP!

                                          POW
                                          Participant

                                            This will do!  😉

                                            POW
                                            Participant

                                              This will do!  😉

                                              POW
                                              Participant

                                                This will do!  😉

                                                BrianP
                                                Participant

                                                  ^^^^^^^^^^^^^

                                                  Wish we had a "like" feature MPIP!

                                                  BrianP
                                                  Participant

                                                    ^^^^^^^^^^^^^

                                                    Wish we had a "like" feature MPIP!

                                                    tschmith
                                                    Participant

                                                      RE: Re: So Confused!  What awesome advice!  

                                                      tschmith
                                                      Participant

                                                        RE: Re: So Confused!  What awesome advice!  

                                                        tschmith
                                                        Participant

                                                          RE: Re: So Confused!  What awesome advice!  

                                                          JC
                                                          Participant

                                                            What does this mean?  "Less and less people stop responding as more time goes forward, until the change in survival becomes virtually unchanging, at least as far forward as they've been able to collect data for. "

                                                          kylez
                                                          Participant

                                                            When I was about to begin on Yervoy I remember discounting whether it might work. Anti-PD1 was already getting a lot of 'buzz', but I could not get into one of those trials. 

                                                            The "1 year" statistic cited by Kevin's nurse doesn't tell the whole story, which is the statistical "long tail" for overall survival. See https://www.hcp.yervoy.com/Pages/efficacy/efficacy-os-in-total-population.aspx. Less and less people stop responding as more time goes forward, until the change in survival becomes virtually unchanging, at least as far forward as they've been able to collect data for. 

                                                            Hope that helps. If it were me now I would probably still try to get into an anti-PD1 trial like I wanted to before in 2011. But my oncologist believes I am almost certainly having a durable response with Yervoy; summer 2014 would be 3 years for me.

                                                            – Kyle

                                                            kylez
                                                            Participant

                                                              When I was about to begin on Yervoy I remember discounting whether it might work. Anti-PD1 was already getting a lot of 'buzz', but I could not get into one of those trials. 

                                                              The "1 year" statistic cited by Kevin's nurse doesn't tell the whole story, which is the statistical "long tail" for overall survival. See https://www.hcp.yervoy.com/Pages/efficacy/efficacy-os-in-total-population.aspx. Less and less people stop responding as more time goes forward, until the change in survival becomes virtually unchanging, at least as far forward as they've been able to collect data for. 

                                                              Hope that helps. If it were me now I would probably still try to get into an anti-PD1 trial like I wanted to before in 2011. But my oncologist believes I am almost certainly having a durable response with Yervoy; summer 2014 would be 3 years for me.

                                                              – Kyle

                                                              Bubbles
                                                              Participant

                                                                I wish I could tell you that there was some one thing that your husband could do to rid himself…for sure…of melanoma. Forever.  Some treatments work for some and not for others.  However, given your current considerations, I thought you might like to look at the article I posted on my blog (just Google "Chaotically Precise") November 3, 2013.  It starts like this…..

                                                                Melanoma patients…alive and kicking 10 years after ipi!

                                                                Only in melanoma (and a few other horrifying diseases) is ten years post treatment an amazing wonder and something to cheer about!  Oh, well.  We'll take it!

                                                                Some Melanoma Patients Living for up to 10 years After Ipilimumab
                                                                By: Zosia Chustecka. Medscape.com. September 28, 2013 [excerpts]

                                                                Wishing all of you my best.  Celeste

                                                                 

                                                                Bubbles
                                                                Participant

                                                                  I wish I could tell you that there was some one thing that your husband could do to rid himself…for sure…of melanoma. Forever.  Some treatments work for some and not for others.  However, given your current considerations, I thought you might like to look at the article I posted on my blog (just Google "Chaotically Precise") November 3, 2013.  It starts like this…..

                                                                  Melanoma patients…alive and kicking 10 years after ipi!

                                                                  Only in melanoma (and a few other horrifying diseases) is ten years post treatment an amazing wonder and something to cheer about!  Oh, well.  We'll take it!

                                                                  Some Melanoma Patients Living for up to 10 years After Ipilimumab
                                                                  By: Zosia Chustecka. Medscape.com. September 28, 2013 [excerpts]

                                                                  Wishing all of you my best.  Celeste

                                                                   

                                                                  Bubbles
                                                                  Participant

                                                                    I wish I could tell you that there was some one thing that your husband could do to rid himself…for sure…of melanoma. Forever.  Some treatments work for some and not for others.  However, given your current considerations, I thought you might like to look at the article I posted on my blog (just Google "Chaotically Precise") November 3, 2013.  It starts like this…..

                                                                    Melanoma patients…alive and kicking 10 years after ipi!

                                                                    Only in melanoma (and a few other horrifying diseases) is ten years post treatment an amazing wonder and something to cheer about!  Oh, well.  We'll take it!

                                                                    Some Melanoma Patients Living for up to 10 years After Ipilimumab
                                                                    By: Zosia Chustecka. Medscape.com. September 28, 2013 [excerpts]

                                                                    Wishing all of you my best.  Celeste

                                                                     

                                                                    JerryfromFauq
                                                                    Participant

                                                                      IL-2 is the only other treatment to date with comparable though, slightly lower numbers as seen from the following article.  If one wants the current most succesful treatment in trials, this would be the anti-PD-1 treatment, If one can get into them.  As they are trying to obtain FDA approval in the first half  of this year, there have been reports that they may not accept any more people into the trials.  One would then have to wait until FDA aproval is obtained and the treatment is available for purchase on the medical market.. 

                                                                      No Melanoma treatment has shown to provide acrosss the board melanoma success of even 50% for a fairly sshort time,much less the long term.  To date IL-2 holds the longest term "cure", but in only 5-8% of across the board patients.  IPi(Yervoy) currently has a 21% survival at the 3 year point and seems to hit a plateau there..Patients who are alive at this point maintain a long-term survival benefit, Dr. Hodi said. No deaths have been reported after 7 years, with some patients surviving for up to 10 years so far. (AND Still going, Ipi just hasn't been aaround longer to have a longer track record.)

                                                                       

                                                                      http://www.skinandallergynews.com/specialty-focus/cutaneous-oncology/single-article-page/ipilimumabs-long-term-survival-edge-confirmed-in-melanoma/794c094791ed70d845482928b105a054.html

                                                                      Ipilimumab’s long-term survival edge confirmed in melanoma

                                                                       
                                                                       
                                                                       

                                                                      AMSTERDAM – Immunotherapy with ipilimumab provides adurable, long-term survival benefit in patients with metastatic or locally advanced melanoma, a pooled analysis confirms.

                                                                      Median overall survival was 11.4 months and 3-year survival 22% among 1,861 patients receiving ipilimumab (Yervoy) in a mixture of 12 clinical trials.

                                                                      When data from 2,985 additional patients in the expanded access program were included, median overall survival was 9.5 months and 3-year survival 21%, Dr. F. Stephen Hodi Jr., director of the Melanoma Center at the Dana-Farber Cancer Institute, Boston, said at the European Cancer Congress 2013.

                                                                      The pooled analysis, involving eight prospective phase II, two prospective phase III, and two retrospective, observational trials, is the largest survival analysis of ipilimumab to date and provides the most precise estimate yet of its survival benefit.

                                                                      The analysis (LBA24) also confirms the observation that the survival benefit of ipilimumab plateaus around 3 years and that patients who are alive at this point maintain a long-term survival benefit, Dr. Hodi said. No deaths have been reported after 7 years, with some patients surviving for up to 10 years.

                                                                      "A few years ago, we would never imagine using the ‘C’ word, cure, and to see some patients living long term," he said at a press briefing. "Our goal as clinical investigators is to find something that cures patients of their disease, but at least what we’re showing here is that we’re having a great paradigm shift of maybe curing a subset of patients; it’s hard to use that term, but at least turning their disease into a chronic illness, which is a huge paradigm shift from where we were just a few years ago."

                                                                      The survival benefit was not affected by prior therapy, ipilimumab dose (3 mg vs. 10 mg), or inclusion of the expanded access program (EAP) data, Dr. Hodi said.

                                                                      Prof. Martin Gore, medical director of the Royal Marsden Hospital and professor of cancer medicine at the Institute of Cancer Research, both in London, who was invited to discuss the study, disagreed with this conclusion. He highlighted a 6% difference in 3-year overall survival between treatment-naïve and previously treated patients (20% vs. 26%) and a 3% difference in 3-year overall survival between those receiving the licensed 3-mg/kg and 10-mg/kg doses (21% vs. 24%). While these differences probably don’t make a difference in the clinic, they could be relevant with large numbers of patients in clinical trials, he said.

                                                                      The EAP data would have been better utilized as a validation set to evaluate "real world" toxicity with ipilimumab, rather than being included in the pooled analysis, he said.

                                                                      Prefacing further remarks with the comment, "I have not treated a patient with IL-2 [interleukin-2] for 15 years, so I’m not an apologist for it," Prof. Gore also pointed out that the 9.5-month median survival in the pooled analysis is "within the bounds" of what IL-2 provided 20 years ago when it posted a median survival of 10.5 months and 3-year survival of 15% in 631 patients with stage IV melanoma (J. Clin. Oncol. 1998;16:2921-9)

                                                                       

                                                                      JerryfromFauq
                                                                      Participant

                                                                        IL-2 is the only other treatment to date with comparable though, slightly lower numbers as seen from the following article.  If one wants the current most succesful treatment in trials, this would be the anti-PD-1 treatment, If one can get into them.  As they are trying to obtain FDA approval in the first half  of this year, there have been reports that they may not accept any more people into the trials.  One would then have to wait until FDA aproval is obtained and the treatment is available for purchase on the medical market.. 

                                                                        No Melanoma treatment has shown to provide acrosss the board melanoma success of even 50% for a fairly sshort time,much less the long term.  To date IL-2 holds the longest term "cure", but in only 5-8% of across the board patients.  IPi(Yervoy) currently has a 21% survival at the 3 year point and seems to hit a plateau there..Patients who are alive at this point maintain a long-term survival benefit, Dr. Hodi said. No deaths have been reported after 7 years, with some patients surviving for up to 10 years so far. (AND Still going, Ipi just hasn't been aaround longer to have a longer track record.)

                                                                         

                                                                        http://www.skinandallergynews.com/specialty-focus/cutaneous-oncology/single-article-page/ipilimumabs-long-term-survival-edge-confirmed-in-melanoma/794c094791ed70d845482928b105a054.html

                                                                        Ipilimumab’s long-term survival edge confirmed in melanoma

                                                                         
                                                                         
                                                                         

                                                                        AMSTERDAM – Immunotherapy with ipilimumab provides adurable, long-term survival benefit in patients with metastatic or locally advanced melanoma, a pooled analysis confirms.

                                                                        Median overall survival was 11.4 months and 3-year survival 22% among 1,861 patients receiving ipilimumab (Yervoy) in a mixture of 12 clinical trials.

                                                                        When data from 2,985 additional patients in the expanded access program were included, median overall survival was 9.5 months and 3-year survival 21%, Dr. F. Stephen Hodi Jr., director of the Melanoma Center at the Dana-Farber Cancer Institute, Boston, said at the European Cancer Congress 2013.

                                                                        The pooled analysis, involving eight prospective phase II, two prospective phase III, and two retrospective, observational trials, is the largest survival analysis of ipilimumab to date and provides the most precise estimate yet of its survival benefit.

                                                                        The analysis (LBA24) also confirms the observation that the survival benefit of ipilimumab plateaus around 3 years and that patients who are alive at this point maintain a long-term survival benefit, Dr. Hodi said. No deaths have been reported after 7 years, with some patients surviving for up to 10 years.

                                                                        "A few years ago, we would never imagine using the ‘C’ word, cure, and to see some patients living long term," he said at a press briefing. "Our goal as clinical investigators is to find something that cures patients of their disease, but at least what we’re showing here is that we’re having a great paradigm shift of maybe curing a subset of patients; it’s hard to use that term, but at least turning their disease into a chronic illness, which is a huge paradigm shift from where we were just a few years ago."

                                                                        The survival benefit was not affected by prior therapy, ipilimumab dose (3 mg vs. 10 mg), or inclusion of the expanded access program (EAP) data, Dr. Hodi said.

                                                                        Prof. Martin Gore, medical director of the Royal Marsden Hospital and professor of cancer medicine at the Institute of Cancer Research, both in London, who was invited to discuss the study, disagreed with this conclusion. He highlighted a 6% difference in 3-year overall survival between treatment-naïve and previously treated patients (20% vs. 26%) and a 3% difference in 3-year overall survival between those receiving the licensed 3-mg/kg and 10-mg/kg doses (21% vs. 24%). While these differences probably don’t make a difference in the clinic, they could be relevant with large numbers of patients in clinical trials, he said.

                                                                        The EAP data would have been better utilized as a validation set to evaluate "real world" toxicity with ipilimumab, rather than being included in the pooled analysis, he said.

                                                                        Prefacing further remarks with the comment, "I have not treated a patient with IL-2 [interleukin-2] for 15 years, so I’m not an apologist for it," Prof. Gore also pointed out that the 9.5-month median survival in the pooled analysis is "within the bounds" of what IL-2 provided 20 years ago when it posted a median survival of 10.5 months and 3-year survival of 15% in 631 patients with stage IV melanoma (J. Clin. Oncol. 1998;16:2921-9)

                                                                         

                                                                        JerryfromFauq
                                                                        Participant

                                                                          IL-2 is the only other treatment to date with comparable though, slightly lower numbers as seen from the following article.  If one wants the current most succesful treatment in trials, this would be the anti-PD-1 treatment, If one can get into them.  As they are trying to obtain FDA approval in the first half  of this year, there have been reports that they may not accept any more people into the trials.  One would then have to wait until FDA aproval is obtained and the treatment is available for purchase on the medical market.. 

                                                                          No Melanoma treatment has shown to provide acrosss the board melanoma success of even 50% for a fairly sshort time,much less the long term.  To date IL-2 holds the longest term "cure", but in only 5-8% of across the board patients.  IPi(Yervoy) currently has a 21% survival at the 3 year point and seems to hit a plateau there..Patients who are alive at this point maintain a long-term survival benefit, Dr. Hodi said. No deaths have been reported after 7 years, with some patients surviving for up to 10 years so far. (AND Still going, Ipi just hasn't been aaround longer to have a longer track record.)

                                                                           

                                                                          http://www.skinandallergynews.com/specialty-focus/cutaneous-oncology/single-article-page/ipilimumabs-long-term-survival-edge-confirmed-in-melanoma/794c094791ed70d845482928b105a054.html

                                                                          Ipilimumab’s long-term survival edge confirmed in melanoma

                                                                           
                                                                           
                                                                           

                                                                          AMSTERDAM – Immunotherapy with ipilimumab provides adurable, long-term survival benefit in patients with metastatic or locally advanced melanoma, a pooled analysis confirms.

                                                                          Median overall survival was 11.4 months and 3-year survival 22% among 1,861 patients receiving ipilimumab (Yervoy) in a mixture of 12 clinical trials.

                                                                          When data from 2,985 additional patients in the expanded access program were included, median overall survival was 9.5 months and 3-year survival 21%, Dr. F. Stephen Hodi Jr., director of the Melanoma Center at the Dana-Farber Cancer Institute, Boston, said at the European Cancer Congress 2013.

                                                                          The pooled analysis, involving eight prospective phase II, two prospective phase III, and two retrospective, observational trials, is the largest survival analysis of ipilimumab to date and provides the most precise estimate yet of its survival benefit.

                                                                          The analysis (LBA24) also confirms the observation that the survival benefit of ipilimumab plateaus around 3 years and that patients who are alive at this point maintain a long-term survival benefit, Dr. Hodi said. No deaths have been reported after 7 years, with some patients surviving for up to 10 years.

                                                                          "A few years ago, we would never imagine using the ‘C’ word, cure, and to see some patients living long term," he said at a press briefing. "Our goal as clinical investigators is to find something that cures patients of their disease, but at least what we’re showing here is that we’re having a great paradigm shift of maybe curing a subset of patients; it’s hard to use that term, but at least turning their disease into a chronic illness, which is a huge paradigm shift from where we were just a few years ago."

                                                                          The survival benefit was not affected by prior therapy, ipilimumab dose (3 mg vs. 10 mg), or inclusion of the expanded access program (EAP) data, Dr. Hodi said.

                                                                          Prof. Martin Gore, medical director of the Royal Marsden Hospital and professor of cancer medicine at the Institute of Cancer Research, both in London, who was invited to discuss the study, disagreed with this conclusion. He highlighted a 6% difference in 3-year overall survival between treatment-naïve and previously treated patients (20% vs. 26%) and a 3% difference in 3-year overall survival between those receiving the licensed 3-mg/kg and 10-mg/kg doses (21% vs. 24%). While these differences probably don’t make a difference in the clinic, they could be relevant with large numbers of patients in clinical trials, he said.

                                                                          The EAP data would have been better utilized as a validation set to evaluate "real world" toxicity with ipilimumab, rather than being included in the pooled analysis, he said.

                                                                          Prefacing further remarks with the comment, "I have not treated a patient with IL-2 [interleukin-2] for 15 years, so I’m not an apologist for it," Prof. Gore also pointed out that the 9.5-month median survival in the pooled analysis is "within the bounds" of what IL-2 provided 20 years ago when it posted a median survival of 10.5 months and 3-year survival of 15% in 631 patients with stage IV melanoma (J. Clin. Oncol. 1998;16:2921-9)

                                                                           

                                                                          Gene_S
                                                                          Participant

                                                                            Hello,

                                                                            My husband became a Stage IV in Oct. 2010 with lesions in the liver, lungs and one large unresectable pushing against his cervical spine.  He started IPI Clinical Trial with GM-CSF in March 2011 and we virtually watched his 3 small skin lesions disappear and even the one pushing on his cervical spine.

                                                                            He has been NED (no evidence of disease) since Oct. 2012 and in Dec. 2013 he went off of the trial medications.  His trial had the initial 4 doses in 12 weeks and then additional doses every 12 weeks till he went off.  You can read more in his profile if you wish.

                                                                            He had some small reactions while on the Ipi but the one his doctor loved the most was when the eyebrows turned white and he has some vitiligo on his face.  The doctor also loved that we took pictures of the skin lesions every so often and you could see them disappearing.  His doctor says he has also seen Ipi stay working for 7 years and that time is growing longer with time as more people have taken it.

                                                                            Not everyone reacts the same with any of the drugs but we sure are glad that he has survived and also I agree a good positive mental attitude does help immensely.

                                                                            If you would like you can contact us through the board and we can tell you more concerning his case.

                                                                            Judy (loving wife of Gene Stage IV and now NED)

                                                                            Gene_S
                                                                            Participant

                                                                              Hello,

                                                                              My husband became a Stage IV in Oct. 2010 with lesions in the liver, lungs and one large unresectable pushing against his cervical spine.  He started IPI Clinical Trial with GM-CSF in March 2011 and we virtually watched his 3 small skin lesions disappear and even the one pushing on his cervical spine.

                                                                              He has been NED (no evidence of disease) since Oct. 2012 and in Dec. 2013 he went off of the trial medications.  His trial had the initial 4 doses in 12 weeks and then additional doses every 12 weeks till he went off.  You can read more in his profile if you wish.

                                                                              He had some small reactions while on the Ipi but the one his doctor loved the most was when the eyebrows turned white and he has some vitiligo on his face.  The doctor also loved that we took pictures of the skin lesions every so often and you could see them disappearing.  His doctor says he has also seen Ipi stay working for 7 years and that time is growing longer with time as more people have taken it.

                                                                              Not everyone reacts the same with any of the drugs but we sure are glad that he has survived and also I agree a good positive mental attitude does help immensely.

                                                                              If you would like you can contact us through the board and we can tell you more concerning his case.

                                                                              Judy (loving wife of Gene Stage IV and now NED)

                                                                                mwcollins
                                                                                Participant
                                                                                  Thank you all so much for the information and support. I have been having lots of conversations with Kevin, his nurse, God and my grandfather who passed away in 1992 from lymphoma. As scary as this disease is, I can’t let it take away my optimism. Kevin even said that being the optimistic hopeful is what I do best, so I’m going to do that. There are so many treatments now and more on the horizon, so he is going to do whatever necessary. All I need to do now (aside from being hopeful) is maybe look for a job so that I can take some of the financial burden off him (I’ve been a stay home mom for 12+ years now).
                                                                                  mwcollins
                                                                                  Participant
                                                                                    Thank you all so much for the information and support. I have been having lots of conversations with Kevin, his nurse, God and my grandfather who passed away in 1992 from lymphoma. As scary as this disease is, I can’t let it take away my optimism. Kevin even said that being the optimistic hopeful is what I do best, so I’m going to do that. There are so many treatments now and more on the horizon, so he is going to do whatever necessary. All I need to do now (aside from being hopeful) is maybe look for a job so that I can take some of the financial burden off him (I’ve been a stay home mom for 12+ years now).
                                                                                    mwcollins
                                                                                    Participant
                                                                                      Thank you all so much for the information and support. I have been having lots of conversations with Kevin, his nurse, God and my grandfather who passed away in 1992 from lymphoma. As scary as this disease is, I can’t let it take away my optimism. Kevin even said that being the optimistic hopeful is what I do best, so I’m going to do that. There are so many treatments now and more on the horizon, so he is going to do whatever necessary. All I need to do now (aside from being hopeful) is maybe look for a job so that I can take some of the financial burden off him (I’ve been a stay home mom for 12+ years now).
                                                                                    Gene_S
                                                                                    Participant

                                                                                      Hello,

                                                                                      My husband became a Stage IV in Oct. 2010 with lesions in the liver, lungs and one large unresectable pushing against his cervical spine.  He started IPI Clinical Trial with GM-CSF in March 2011 and we virtually watched his 3 small skin lesions disappear and even the one pushing on his cervical spine.

                                                                                      He has been NED (no evidence of disease) since Oct. 2012 and in Dec. 2013 he went off of the trial medications.  His trial had the initial 4 doses in 12 weeks and then additional doses every 12 weeks till he went off.  You can read more in his profile if you wish.

                                                                                      He had some small reactions while on the Ipi but the one his doctor loved the most was when the eyebrows turned white and he has some vitiligo on his face.  The doctor also loved that we took pictures of the skin lesions every so often and you could see them disappearing.  His doctor says he has also seen Ipi stay working for 7 years and that time is growing longer with time as more people have taken it.

                                                                                      Not everyone reacts the same with any of the drugs but we sure are glad that he has survived and also I agree a good positive mental attitude does help immensely.

                                                                                      If you would like you can contact us through the board and we can tell you more concerning his case.

                                                                                      Judy (loving wife of Gene Stage IV and now NED)

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