MRF-Logo2019-Horizontal-RGB
ipi late responders & side effects
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

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?)

    Viewing 5 reply threads
    • 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

                    • 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 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 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 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.

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

                                            Thanks Lisa!

                                            Vermont_Donna

                                            • 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 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

                                              • 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

                                            Viewing 5 reply threads
                                            • You must be logged in to reply to this topic.
                                            About the MRF Patient Forum

                                            The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                            The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                            Popular Topics