What fraction of Ipi responders stay tumour-free?
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What fraction of Ipi responders stay tumour-free?

› Forums › General Melanoma Community › What fraction of Ipi responders stay tumour-free?

  • Post
    • February 1, 2016 at 11:41 pm
    MoiraM
    Participant

    I went down the Ipi route for treatment of my Stage III melanoma. Good news is I am a responder and, six months later, the tumours in my lymph nodes have shrunk so that they can no longer be distinguished using a CT scan. (Bad news is that I have ended up with damage to my anterior pituitary gland that is probably permanent.)

    My specialist has shown me a graph that appears to show that if I make it to three years then I am likely to make it to ten but she cannot answer my question, which is What proportion of 'Ipi responders' make it to the three year milestone without a reoccurence?

    Has anyone got an answer to this question? Or any other relevant information (maybe like a link to a useful research paper).

Viewing 11 reply threads
  • Replies
      • February 2, 2016 at 12:07 am
      BrianP
      Participant
      • February 2, 2016 at 12:07 am
      BrianP
      Participant
        • February 2, 2016 at 1:01 am
        MoiraM
        Participant

        Thank you. I shall get reading.

        • February 2, 2016 at 1:01 am
        MoiraM
        Participant

        Thank you. I shall get reading.

        • February 2, 2016 at 1:01 am
        MoiraM
        Participant

        Thank you. I shall get reading.

        • February 7, 2016 at 9:55 am
        MelaFella
        Participant

        I am one vote as a responder who did recur… not as iif that's much of a prognosis for oothers, but I ththought I'd let it bebe known. Of course, I have almost run the full gauntlet andandhave thus far recurred after each and every one. Yet I'm still fighting, still loving and still laughing. Melanoma is only going to make the good parts of life better as it takes the worst of my life far less daunting. We can all beat this – it only matters how you define victory! 

        • February 7, 2016 at 9:55 am
        MelaFella
        Participant

        I am one vote as a responder who did recur… not as iif that's much of a prognosis for oothers, but I ththought I'd let it bebe known. Of course, I have almost run the full gauntlet andandhave thus far recurred after each and every one. Yet I'm still fighting, still loving and still laughing. Melanoma is only going to make the good parts of life better as it takes the worst of my life far less daunting. We can all beat this – it only matters how you define victory! 

        • February 7, 2016 at 9:55 am
        MelaFella
        Participant

        I am one vote as a responder who did recur… not as iif that's much of a prognosis for oothers, but I ththought I'd let it bebe known. Of course, I have almost run the full gauntlet andandhave thus far recurred after each and every one. Yet I'm still fighting, still loving and still laughing. Melanoma is only going to make the good parts of life better as it takes the worst of my life far less daunting. We can all beat this – it only matters how you define victory! 

        • February 7, 2016 at 2:17 pm
        MoiraM
        Participant

        Thank you so much for replying. It was like there was only two types of information about there – the staistics that are so hard to interpret and the case studies of responders whose tunours vanished. Coming on this website, and especially having people like you respond, has helped me understand that there is a huge range of 'responses' even among us 'responders'.

        I read your bio. Here's hoing your second encounter with immunotherapy has even more effect that Ipi but with fewer side effects.

        Congratulations on having the greatest wide on the planet! I think I have the greatest husband.

        • February 7, 2016 at 2:17 pm
        MoiraM
        Participant

        Thank you so much for replying. It was like there was only two types of information about there – the staistics that are so hard to interpret and the case studies of responders whose tunours vanished. Coming on this website, and especially having people like you respond, has helped me understand that there is a huge range of 'responses' even among us 'responders'.

        I read your bio. Here's hoing your second encounter with immunotherapy has even more effect that Ipi but with fewer side effects.

        Congratulations on having the greatest wide on the planet! I think I have the greatest husband.

        • February 7, 2016 at 2:17 pm
        MoiraM
        Participant

        Thank you so much for replying. It was like there was only two types of information about there – the staistics that are so hard to interpret and the case studies of responders whose tunours vanished. Coming on this website, and especially having people like you respond, has helped me understand that there is a huge range of 'responses' even among us 'responders'.

        I read your bio. Here's hoing your second encounter with immunotherapy has even more effect that Ipi but with fewer side effects.

        Congratulations on having the greatest wide on the planet! I think I have the greatest husband.

      • February 2, 2016 at 12:07 am
      BrianP
      Participant
      • February 2, 2016 at 12:09 am
      Bubbles
      Participant

      Congrats on being a responder. Here are some articles that may interest you:

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/11/melanoma-patientsalive-and-kicking-10.html

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/ipi-for-melanomathe-data-keeps-pouring.html

      There is much more about ipi/yervoy on my blog if you use the search bubble top left. I wish you my best. Celeste

      • February 2, 2016 at 12:09 am
      Bubbles
      Participant

      Congrats on being a responder. Here are some articles that may interest you:

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/11/melanoma-patientsalive-and-kicking-10.html

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/ipi-for-melanomathe-data-keeps-pouring.html

      There is much more about ipi/yervoy on my blog if you use the search bubble top left. I wish you my best. Celeste

        • February 2, 2016 at 1:02 am
        MoiraM
        Participant

        Thanks. I definitely haven't see some of those studies before.

        • February 2, 2016 at 1:02 am
        MoiraM
        Participant

        Thanks. I definitely haven't see some of those studies before.

        • February 2, 2016 at 1:02 am
        MoiraM
        Participant

        Thanks. I definitely haven't see some of those studies before.

      • February 2, 2016 at 12:09 am
      Bubbles
      Participant

      Congrats on being a responder. Here are some articles that may interest you:

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/11/melanoma-patientsalive-and-kicking-10.html

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/ipi-for-melanomathe-data-keeps-pouring.html

      There is much more about ipi/yervoy on my blog if you use the search bubble top left. I wish you my best. Celeste

      • February 2, 2016 at 3:32 pm
      Gene_S
      Participant

      Hello,

      First I would like to say that Ipi hasn't been out for 10 years in use in melanoma so it would be hard for them to have numbers to far out.

      Now on that note my husband started Ipi in Mar. 2011 after being dianosed Stage IV in Nov. 2010.  He had mets in his liver, lungs and unresectable on the cervical spine at C-1, C-2 and 4 sub q's in that area and became NED in 2012.  He has been NED for over 3 years now.  In the hospital where he was in the Clinical Trial there were 12.  He did the best and one other person did well, some had to be taken from the trial as they had bad side effects, some passed and some reoccurred.

      If you would like to read more about him and his journey check out his profile.

      Judy (loving wife of Gene Stage IV and now NED for over 3 years.)

       

      • February 2, 2016 at 3:32 pm
      Gene_S
      Participant

      Hello,

      First I would like to say that Ipi hasn't been out for 10 years in use in melanoma so it would be hard for them to have numbers to far out.

      Now on that note my husband started Ipi in Mar. 2011 after being dianosed Stage IV in Nov. 2010.  He had mets in his liver, lungs and unresectable on the cervical spine at C-1, C-2 and 4 sub q's in that area and became NED in 2012.  He has been NED for over 3 years now.  In the hospital where he was in the Clinical Trial there were 12.  He did the best and one other person did well, some had to be taken from the trial as they had bad side effects, some passed and some reoccurred.

      If you would like to read more about him and his journey check out his profile.

      Judy (loving wife of Gene Stage IV and now NED for over 3 years.)

       

        • February 2, 2016 at 5:33 pm
        ed williams
        Participant

        Judy, if you take a look at a youtube video by Dr. Antoni Ribas of UCLA titled "Melanoma Immunotherapy , What's next for Patients" which was published in 2015. In the video Dr.Ribas talks about one of his first patients that he treated in 2001 that is still alive after having Ipi treatments. He goes on to talk about two other patients that he treated ,one in 2003 and the other in 2004 that are both doing great still today. Ipi has only been approved by the FDA since 2011 but earlier research and trials took place in order to get the approval.

        • February 2, 2016 at 5:33 pm
        ed williams
        Participant

        Judy, if you take a look at a youtube video by Dr. Antoni Ribas of UCLA titled "Melanoma Immunotherapy , What's next for Patients" which was published in 2015. In the video Dr.Ribas talks about one of his first patients that he treated in 2001 that is still alive after having Ipi treatments. He goes on to talk about two other patients that he treated ,one in 2003 and the other in 2004 that are both doing great still today. Ipi has only been approved by the FDA since 2011 but earlier research and trials took place in order to get the approval.

        • February 2, 2016 at 5:33 pm
        ed williams
        Participant

        Judy, if you take a look at a youtube video by Dr. Antoni Ribas of UCLA titled "Melanoma Immunotherapy , What's next for Patients" which was published in 2015. In the video Dr.Ribas talks about one of his first patients that he treated in 2001 that is still alive after having Ipi treatments. He goes on to talk about two other patients that he treated ,one in 2003 and the other in 2004 that are both doing great still today. Ipi has only been approved by the FDA since 2011 but earlier research and trials took place in order to get the approval.

        • February 2, 2016 at 5:58 pm
        MoiraM
        Participant

        Thank you. I think the graph included all the trials.

        • February 2, 2016 at 5:58 pm
        MoiraM
        Participant

        Thank you. I think the graph included all the trials.

        • February 2, 2016 at 5:58 pm
        MoiraM
        Participant

        Thank you. I think the graph included all the trials.

        • February 2, 2016 at 5:59 pm
        MoiraM
        Participant

        Thank you, I will.

        • February 2, 2016 at 5:59 pm
        MoiraM
        Participant

        Thank you, I will.

        • February 2, 2016 at 5:59 pm
        MoiraM
        Participant

        Thank you, I will.

      • February 2, 2016 at 3:32 pm
      Gene_S
      Participant

      Hello,

      First I would like to say that Ipi hasn't been out for 10 years in use in melanoma so it would be hard for them to have numbers to far out.

      Now on that note my husband started Ipi in Mar. 2011 after being dianosed Stage IV in Nov. 2010.  He had mets in his liver, lungs and unresectable on the cervical spine at C-1, C-2 and 4 sub q's in that area and became NED in 2012.  He has been NED for over 3 years now.  In the hospital where he was in the Clinical Trial there were 12.  He did the best and one other person did well, some had to be taken from the trial as they had bad side effects, some passed and some reoccurred.

      If you would like to read more about him and his journey check out his profile.

      Judy (loving wife of Gene Stage IV and now NED for over 3 years.)

       

      • February 2, 2016 at 4:28 pm
      gregor913
      Participant
      Don’t look into any statistics everyone is different. My doc told me there’s some stats out for disease free survival but not for overall survival because people are living longer. You are your own individual person. Don’t buy into statistics there so old anyway. Greg
      • February 2, 2016 at 4:28 pm
      gregor913
      Participant
      Don’t look into any statistics everyone is different. My doc told me there’s some stats out for disease free survival but not for overall survival because people are living longer. You are your own individual person. Don’t buy into statistics there so old anyway. Greg
        • February 2, 2016 at 6:11 pm
        MoiraM
        Participant

        Thanks, Greg.

        I like statistics! It's just the way I am. Knowing my chances helps me made decisions about my day-today life.

        I really lucked out with the Ipi as it was a day treatment and, despite really serious side effects, I was never so ill that I was hospitalised. I have an acute phobia of doctors, hospitals and specifically about being put under heneral anaesthetic. My brilliant doctor (of whom I am terrified) has mangaged to treat me so far with no admissions and a single day surgery to remove the initial tumour and give me a skin graft to close the hole.

        I was quite happy to die rather than be admitted to hospital. Every visit, even for a few hours, and every scan is extremely traumatic for me.

        I had never been to a hospital since I was 3 until last year. I had not  been to see any doctor for 20 years.

        It is a bit eaiser now because I have had some pyschotherapy.

         

         

        • February 2, 2016 at 6:11 pm
        MoiraM
        Participant

        Thanks, Greg.

        I like statistics! It's just the way I am. Knowing my chances helps me made decisions about my day-today life.

        I really lucked out with the Ipi as it was a day treatment and, despite really serious side effects, I was never so ill that I was hospitalised. I have an acute phobia of doctors, hospitals and specifically about being put under heneral anaesthetic. My brilliant doctor (of whom I am terrified) has mangaged to treat me so far with no admissions and a single day surgery to remove the initial tumour and give me a skin graft to close the hole.

        I was quite happy to die rather than be admitted to hospital. Every visit, even for a few hours, and every scan is extremely traumatic for me.

        I had never been to a hospital since I was 3 until last year. I had not  been to see any doctor for 20 years.

        It is a bit eaiser now because I have had some pyschotherapy.

         

         

        • February 2, 2016 at 7:37 pm
        gregor913
        Participant
        Are you stage 3c. Do you have intransit mets?
        • February 2, 2016 at 7:37 pm
        gregor913
        Participant
        Are you stage 3c. Do you have intransit mets?
        • February 2, 2016 at 11:15 pm
        MoiraM
        Participant

        Yes I am 3C.

        I do not know aboout intransit mets. I guess so as it got from my forearm to the lymph nodes in my armpit.

        After the first CT scan they thought it was in two other places (abdominal wall and lung) but the PET scan was negative for those two but confirmed two tumours in the armpit lymph nodes.

        I did not follow the conventional route because of the phobia so they have limited information to go on.

        • February 2, 2016 at 11:15 pm
        MoiraM
        Participant

        Yes I am 3C.

        I do not know aboout intransit mets. I guess so as it got from my forearm to the lymph nodes in my armpit.

        After the first CT scan they thought it was in two other places (abdominal wall and lung) but the PET scan was negative for those two but confirmed two tumours in the armpit lymph nodes.

        I did not follow the conventional route because of the phobia so they have limited information to go on.

        • February 2, 2016 at 11:17 pm
        MoiraM
        Participant

        Both by affected lymph nodes are now indistinguishable from normal lymph nodes in a CT scan.

        • February 2, 2016 at 11:17 pm
        MoiraM
        Participant

        Both by affected lymph nodes are now indistinguishable from normal lymph nodes in a CT scan.

        • February 2, 2016 at 11:17 pm
        MoiraM
        Participant

        Both by affected lymph nodes are now indistinguishable from normal lymph nodes in a CT scan.

        • February 2, 2016 at 11:15 pm
        MoiraM
        Participant

        Yes I am 3C.

        I do not know aboout intransit mets. I guess so as it got from my forearm to the lymph nodes in my armpit.

        After the first CT scan they thought it was in two other places (abdominal wall and lung) but the PET scan was negative for those two but confirmed two tumours in the armpit lymph nodes.

        I did not follow the conventional route because of the phobia so they have limited information to go on.

        • February 2, 2016 at 7:37 pm
        gregor913
        Participant
        Are you stage 3c. Do you have intransit mets?
        • February 2, 2016 at 6:11 pm
        MoiraM
        Participant

        Thanks, Greg.

        I like statistics! It's just the way I am. Knowing my chances helps me made decisions about my day-today life.

        I really lucked out with the Ipi as it was a day treatment and, despite really serious side effects, I was never so ill that I was hospitalised. I have an acute phobia of doctors, hospitals and specifically about being put under heneral anaesthetic. My brilliant doctor (of whom I am terrified) has mangaged to treat me so far with no admissions and a single day surgery to remove the initial tumour and give me a skin graft to close the hole.

        I was quite happy to die rather than be admitted to hospital. Every visit, even for a few hours, and every scan is extremely traumatic for me.

        I had never been to a hospital since I was 3 until last year. I had not  been to see any doctor for 20 years.

        It is a bit eaiser now because I have had some pyschotherapy.

         

         

      • February 2, 2016 at 4:28 pm
      gregor913
      Participant
      Don’t look into any statistics everyone is different. My doc told me there’s some stats out for disease free survival but not for overall survival because people are living longer. You are your own individual person. Don’t buy into statistics there so old anyway. Greg
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