ipi late responders & side effects
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ipi late responders & side effects

› Forums › General Melanoma Community › ipi late responders & side effects

  • Post
    • September 29, 2011 at 6:43 pm
    Terra
    Participant

    Hi – could anybody who was a late responder to ipi let meknow what your side effects were like i.e. did you get them while on the treatment or not until you were responding?  (I know it is a long shot but just wondering?)

    Hi – could anybody who was a late responder to ipi let meknow what your side effects were like i.e. did you get them while on the treatment or not until you were responding?  (I know it is a long shot but just wondering?)

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  • Replies
      • September 29, 2011 at 7:39 pm
      Lisa13
      Participant

      Hi Terra,

      I'm not sure if I'm a responder yet as I just completed my 3rd infusion, but I do have some information on symptoms.

      I havn't had many symptoms at all while on Yervoy, other than itchy skin and a rash that came and went. My Dr. and clinical trial nurse informed me that the lack of symptoms doesn't mean the drug isn't working. They've had several people who were responders without any symptoms. 

      Best of luck!

      Lisa – Stage 4

      • September 29, 2011 at 7:39 pm
      Lisa13
      Participant

      Hi Terra,

      I'm not sure if I'm a responder yet as I just completed my 3rd infusion, but I do have some information on symptoms.

      I havn't had many symptoms at all while on Yervoy, other than itchy skin and a rash that came and went. My Dr. and clinical trial nurse informed me that the lack of symptoms doesn't mean the drug isn't working. They've had several people who were responders without any symptoms. 

      Best of luck!

      Lisa – Stage 4

      • September 29, 2011 at 7:39 pm
      Lisa13
      Participant

      Hi Terra,

      I'm not sure if I'm a responder yet as I just completed my 3rd infusion, but I do have some information on symptoms.

      I havn't had many symptoms at all while on Yervoy, other than itchy skin and a rash that came and went. My Dr. and clinical trial nurse informed me that the lack of symptoms doesn't mean the drug isn't working. They've had several people who were responders without any symptoms. 

      Best of luck!

      Lisa – Stage 4

      • September 29, 2011 at 7:39 pm
      Lisa13
      Participant

      Hi Terra,

      I'm not sure if I'm a responder yet as I just completed my 3rd infusion, but I do have some information on symptoms.

      I havn't had many symptoms at all while on Yervoy, other than itchy skin and a rash that came and went. My Dr. and clinical trial nurse informed me that the lack of symptoms doesn't mean the drug isn't working. They've had several people who were responders without any symptoms. 

      Best of luck!

      Lisa – Stage 4

      • September 29, 2011 at 7:39 pm
      Lisa13
      Participant

      Hi Terra,

      I'm not sure if I'm a responder yet as I just completed my 3rd infusion, but I do have some information on symptoms.

      I havn't had many symptoms at all while on Yervoy, other than itchy skin and a rash that came and went. My Dr. and clinical trial nurse informed me that the lack of symptoms doesn't mean the drug isn't working. They've had several people who were responders without any symptoms. 

      Best of luck!

      Lisa – Stage 4

      • September 29, 2011 at 7:39 pm
      Lisa13
      Participant

      Hi Terra,

      I'm not sure if I'm a responder yet as I just completed my 3rd infusion, but I do have some information on symptoms.

      I havn't had many symptoms at all while on Yervoy, other than itchy skin and a rash that came and went. My Dr. and clinical trial nurse informed me that the lack of symptoms doesn't mean the drug isn't working. They've had several people who were responders without any symptoms. 

      Best of luck!

      Lisa – Stage 4

        • October 1, 2011 at 11:56 am
        Vermont_Donna
        Participant

        Hi Terra,

        I am not sure what you mean by "late responder" to Ipi. I started having a response after the first or second dose…I dont remember….you can look at my profile. I did not have severe side effects. I am considered a complete responder and I have been NED for 7 months now.

        I hope this works for your husband!

        Vermont_Donna, stage 3a, NED

        • October 1, 2011 at 11:56 am
        Vermont_Donna
        Participant

        Hi Terra,

        I am not sure what you mean by "late responder" to Ipi. I started having a response after the first or second dose…I dont remember….you can look at my profile. I did not have severe side effects. I am considered a complete responder and I have been NED for 7 months now.

        I hope this works for your husband!

        Vermont_Donna, stage 3a, NED

        • October 1, 2011 at 10:39 pm
        Lisa13
        Participant

        Hi Donna,

        Since you had sub q's, it was easy to see your response because they were on your skin and you could actually watch them regressing.  We can't watch the regression of internal mets (lung, liver) so we must wait 12 weeks to know if anything is happening which is quite frustrating. Late responders to ipi are common and I hope Terra's husband is one of them.

        We've heard many people with sub q's have success with ipi and that is fabulous news! It seems to work quite well on sub q's and lymph nodes.  I hope to see the good news roll in for this drug working on internal organ mets and Stage 4 patients.

        I wish you continued months and years of NED Donna and the best of luck to everyone whose fighting off this disease.

        Lisa – Stage 4 

        • October 1, 2011 at 10:39 pm
        Lisa13
        Participant

        Hi Donna,

        Since you had sub q's, it was easy to see your response because they were on your skin and you could actually watch them regressing.  We can't watch the regression of internal mets (lung, liver) so we must wait 12 weeks to know if anything is happening which is quite frustrating. Late responders to ipi are common and I hope Terra's husband is one of them.

        We've heard many people with sub q's have success with ipi and that is fabulous news! It seems to work quite well on sub q's and lymph nodes.  I hope to see the good news roll in for this drug working on internal organ mets and Stage 4 patients.

        I wish you continued months and years of NED Donna and the best of luck to everyone whose fighting off this disease.

        Lisa – Stage 4 

        • October 2, 2011 at 12:19 am
        Terra
        Participant

        I keep hearing that some people can have a response 6 – 12 months later and I was wondering if any of those people had side effects correspond with this late response.  A slim chance Derek is one of them, he just suddenly got very tired this week and a small part of me was hoping that what it was a late response to ipi but of course ut could just be the cancer or the cold that is in our house – who knows.  Congratulations Donna and I hope you respond well Lisa!

        • October 2, 2011 at 12:19 am
        Terra
        Participant

        I keep hearing that some people can have a response 6 – 12 months later and I was wondering if any of those people had side effects correspond with this late response.  A slim chance Derek is one of them, he just suddenly got very tired this week and a small part of me was hoping that what it was a late response to ipi but of course ut could just be the cancer or the cold that is in our house – who knows.  Congratulations Donna and I hope you respond well Lisa!

        • October 2, 2011 at 1:16 am
        Lisa13
        Participant

        Being tired could be caused by all those things mentioned as well as so many other reasons. Some symptoms can linger after any cancer treatment and fatigue is a symptom of ipi. 

        Terra, I know the Dr suggested Derek didn't respond to Yervoy, but is he still scheduled for another scan?  My understanding is you get scans 12 weeks after the first does and then 4 weeks after the 4th. 

        I was told by the clinical nurse that people have responded to Yervoy with no side effects whatsoever – everybody is different.

        I'm sending prayers and best wishes your way.

        Lisa – Stage 4

         

        • October 2, 2011 at 1:16 am
        Lisa13
        Participant

        Being tired could be caused by all those things mentioned as well as so many other reasons. Some symptoms can linger after any cancer treatment and fatigue is a symptom of ipi. 

        Terra, I know the Dr suggested Derek didn't respond to Yervoy, but is he still scheduled for another scan?  My understanding is you get scans 12 weeks after the first does and then 4 weeks after the 4th. 

        I was told by the clinical nurse that people have responded to Yervoy with no side effects whatsoever – everybody is different.

        I'm sending prayers and best wishes your way.

        Lisa – Stage 4

         

        • October 2, 2011 at 11:14 am
        Vermont_Donna
        Participant

        Terra,

        I am so hoping that Ipi is the right drug for Derek and that he responds to it!!! Thanks for explaining what you mean by late response.

        Vermont_Donna, stage 3a, NED

        • October 2, 2011 at 11:14 am
        Vermont_Donna
        Participant

        Terra,

        I am so hoping that Ipi is the right drug for Derek and that he responds to it!!! Thanks for explaining what you mean by late response.

        Vermont_Donna, stage 3a, NED

        • October 2, 2011 at 11:12 am
        Vermont_Donna
        Participant

        Thanks Lisa!

        Vermont_Donna

        • October 2, 2011 at 11:12 am
        Vermont_Donna
        Participant

        Thanks Lisa!

        Vermont_Donna

        • October 2, 2011 at 2:44 pm
        Terra
        Participant

        We have scans this week (hopefully) for TIL at NCI – will let you know.

        • October 2, 2011 at 2:44 pm
        Terra
        Participant

        We have scans this week (hopefully) for TIL at NCI – will let you know.

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