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Yervoy: Has anyone progressed on or after yervoy infusions???

Forums General Melanoma Community Yervoy: Has anyone progressed on or after yervoy infusions???

  • Post
    susanr
    Participant

      Hi Everyone who reads this.  I have been reviewing the posts and think I know the answer to my question.  I would like to hear input/advice to anyone who has progressed with mets or have their mets become larger while receiving yervoy or after they finished infusions.  Appreciate the feedback and hopefully it can help others understand this drug.  I see may posts about yervoy and many feel confused about this drug.  I understand what it does but since there is not much on post market studies, We have to rely on each other to get some sense on how this drug works/res

      Hi Everyone who reads this.  I have been reviewing the posts and think I know the answer to my question.  I would like to hear input/advice to anyone who has progressed with mets or have their mets become larger while receiving yervoy or after they finished infusions.  Appreciate the feedback and hopefully it can help others understand this drug.  I see may posts about yervoy and many feel confused about this drug.  I understand what it does but since there is not much on post market studies, We have to rely on each other to get some sense on how this drug works/responds.  Appreciate any feedback.

      Susan

    Viewing 8 reply threads
    • Replies
        justlittleoleme
        Participant

          My husband was stage 3 NED before he started ipi.  He has now progressed to stage 4 with met to spine, pelvis, lung and rib.

          Our thinking is that the ipi highlighted what was already there but not able to be seen prior to ipi.

            NYKaren
            Participant

              I did progress after ipi.  Thankfully still stage IIIc, but marked spreading of sattelite mets.  Also progressed after IL-2, to which I was thought to be responding, so I got to go back and do it again.  However, I just posted an update on my Yervoy reinduction…I don't know what will happen after, but for right now, my visible disease is regressing. 

              hope this helps,

              karen

              Since it can take many weeks for IPI to kick in I say yes. I was started on IPI in august 2011 and had the first, second and third infusion so 6 weeks but my disease continued to progress so IPI was stopped and zelboraf was started. By the end of Dec. my hair which had fallen out due to radiation was beginning to grow back all white so it was determined I was probably a late responder to the IPI and when my liver numbers began to climb in March so I was approved to be reintroduced to 4 rds of ipi. .i am due for my third IPI in two days. My eye brows are now white too.
              Since it can take many weeks for IPI to kick in I say yes. I was started on IPI in august 2011 and had the first, second and third infusion so 6 weeks but my disease continued to progress so IPI was stopped and zelboraf was started. By the end of Dec. my hair which had fallen out due to radiation was beginning to grow back all white so it was determined I was probably a late responder to the IPI and when my liver numbers began to climb in March so I was approved to be reintroduced to 4 rds of ipi. .i am due for my third IPI in two days. My eye brows are now white too.
              susanr
              Participant

                Thanks kathy.  I hope you do well on your second round.  Dont worry about your hair or eyebrows…..tske care of yourself and get strong.  treat yourself to the salon and they will fix you right up to get rid of the grey…….my thoughts are with you.

                susanr
                Participant

                  Thanks kathy.  I hope you do well on your second round.  Dont worry about your hair or eyebrows…..tske care of yourself and get strong.  treat yourself to the salon and they will fix you right up to get rid of the grey…….my thoughts are with you.

                  susanr
                  Participant

                    Thanks kathy.  I hope you do well on your second round.  Dont worry about your hair or eyebrows…..tske care of yourself and get strong.  treat yourself to the salon and they will fix you right up to get rid of the grey…….my thoughts are with you.

                    Since it can take many weeks for IPI to kick in I say yes. I was started on IPI in august 2011 and had the first, second and third infusion so 6 weeks but my disease continued to progress so IPI was stopped and zelboraf was started. By the end of Dec. my hair which had fallen out due to radiation was beginning to grow back all white so it was determined I was probably a late responder to the IPI and when my liver numbers began to climb in March so I was approved to be reintroduced to 4 rds of ipi. .i am due for my third IPI in two days. My eye brows are now white too.
                    Karen, when did you have initial IPI treatment and how long before reinduction? I responded extremely well to the IPI, w exception to the 4 baseball sized mets in my bowel, which were surgically removed. Am now NED, finished IPI January 8. As side effects were bearable, I’d love to be able to rein duct whe/if necessary… Thanks!
                    Karen, when did you have initial IPI treatment and how long before reinduction? I responded extremely well to the IPI, w exception to the 4 baseball sized mets in my bowel, which were surgically removed. Am now NED, finished IPI January 8. As side effects were bearable, I’d love to be able to rein duct whe/if necessary… Thanks!
                    Karen, when did you have initial IPI treatment and how long before reinduction? I responded extremely well to the IPI, w exception to the 4 baseball sized mets in my bowel, which were surgically removed. Am now NED, finished IPI January 8. As side effects were bearable, I’d love to be able to rein duct whe/if necessary… Thanks!
                    NYKaren
                    Participant

                      I did progress after ipi.  Thankfully still stage IIIc, but marked spreading of sattelite mets.  Also progressed after IL-2, to which I was thought to be responding, so I got to go back and do it again.  However, I just posted an update on my Yervoy reinduction…I don't know what will happen after, but for right now, my visible disease is regressing. 

                      hope this helps,

                      karen

                      NYKaren
                      Participant

                        I did progress after ipi.  Thankfully still stage IIIc, but marked spreading of sattelite mets.  Also progressed after IL-2, to which I was thought to be responding, so I got to go back and do it again.  However, I just posted an update on my Yervoy reinduction…I don't know what will happen after, but for right now, my visible disease is regressing. 

                        hope this helps,

                        karen

                        susanr
                        Participant

                          thanks for your response.  i agree…ipi enhances what is hidden on the scans.  Thanks again and hope your husband gets better.

                          susanr
                          Participant

                            thanks for your response.  i agree…ipi enhances what is hidden on the scans.  Thanks again and hope your husband gets better.

                            susanr
                            Participant

                              thanks for your response.  i agree…ipi enhances what is hidden on the scans.  Thanks again and hope your husband gets better.

                              susanr
                              Participant

                                thanks for your post.  I agree that ipi enhanced what is hidden.  hope he does well.

                                susanr
                                Participant

                                  thanks for your post.  I agree that ipi enhanced what is hidden.  hope he does well.

                                  susanr
                                  Participant

                                    thanks for your post.  I agree that ipi enhanced what is hidden.  hope he does well.

                                  justlittleoleme
                                  Participant

                                    My husband was stage 3 NED before he started ipi.  He has now progressed to stage 4 with met to spine, pelvis, lung and rib.

                                    Our thinking is that the ipi highlighted what was already there but not able to be seen prior to ipi.

                                    justlittleoleme
                                    Participant

                                      My husband was stage 3 NED before he started ipi.  He has now progressed to stage 4 with met to spine, pelvis, lung and rib.

                                      Our thinking is that the ipi highlighted what was already there but not able to be seen prior to ipi.

                                      audgator
                                      Participant

                                        My lung & liver mets grew while on ipi but not much. They apparently are slow growing. I'm on anti-PD1 now. Remember, all our stories are just anecdotal evidence and not scientific data. I would rely on a trained professional for yes or no advice.

                                        Dan

                                        audgator
                                        Participant

                                          My lung & liver mets grew while on ipi but not much. They apparently are slow growing. I'm on anti-PD1 now. Remember, all our stories are just anecdotal evidence and not scientific data. I would rely on a trained professional for yes or no advice.

                                          Dan

                                            susanr
                                            Participant

                                              Thanks Dan.  Hope you post great response to your response on the trial.  I agree about the posts not evidence proof.  Sometimes the best docs don't know either unless they get feedback from patients.  Many don't know what yervoy will do unless they have 5 yrs. post market studies done.  if you hear some of the stories posted it can sometimes give you hope or an idea what to experience on the drug…esp. when no treatment is wiping melanoma out by more than 20 %….all the treatments show stinky results in my eyes/opinion.  I hope I am wrong…….

                                              susanr
                                              Participant

                                                Thanks Dan.  Hope you post great response to your response on the trial.  I agree about the posts not evidence proof.  Sometimes the best docs don't know either unless they get feedback from patients.  Many don't know what yervoy will do unless they have 5 yrs. post market studies done.  if you hear some of the stories posted it can sometimes give you hope or an idea what to experience on the drug…esp. when no treatment is wiping melanoma out by more than 20 %….all the treatments show stinky results in my eyes/opinion.  I hope I am wrong…….

                                                susanr
                                                Participant

                                                  Thanks Dan.  Hope you post great response to your response on the trial.  I agree about the posts not evidence proof.  Sometimes the best docs don't know either unless they get feedback from patients.  Many don't know what yervoy will do unless they have 5 yrs. post market studies done.  if you hear some of the stories posted it can sometimes give you hope or an idea what to experience on the drug…esp. when no treatment is wiping melanoma out by more than 20 %….all the treatments show stinky results in my eyes/opinion.  I hope I am wrong…….

                                                audgator
                                                Participant

                                                  My lung & liver mets grew while on ipi but not much. They apparently are slow growing. I'm on anti-PD1 now. Remember, all our stories are just anecdotal evidence and not scientific data. I would rely on a trained professional for yes or no advice.

                                                  Dan

                                                  susankstaub
                                                  Participant

                                                    Hello to all,

                                                    My wonderful husband who is 80, still working, exercises daily, has trainer and cycles twice weekly, has had face and arm melanomas, was diagnosed 12-11 with melanoma of lung and brain, he was treated with the new to our area CyberKnife radiation therapy which we cannot say enough good about,3 to the lung and one to brain, then Yervoy every 3wks, 4 times.  He did spectacular with everything, no side effects whatsoever, and approx. 4 days after last infusion, was hit with fatigue that has kept him from doing anything, has some dizziness with it.  Friday, 5-11-12, had ct scans, Mri's and will be followed up with Doc on 5-16, just wondered if anyone else had this side effect  and any info … lab results from 5-9 were all normal with only slight thyroid change, how long did it last?  There does not seem to be much info out there on it.

                                                    Hope I am following correct format, I am a newbie, 

                                                     

                                                    Our thoughts and prayers go out to all and many well wishes.

                                                     

                                                    Susan

                                                      I have experienced 3 infusions of Yervoy in fall of 2011. I then was started on Zelboraf to stop disease progression. In march of 2012 brain mets along with rising liver numbers indicated Zelboraf may be in the process of failing. So I was reintroduced to ipi at this point I am down 3 infusions with the fourth due may 31 , 2012. I have discovered I react strongly to IPI rashes, fatigue dizziness etc. first go round was more difficult. But I am noticing that as my infusions continue each one hits me a little harder weakness, dizziness. By the third week I start to feel more normal so one more infusion to go. As long as it works I will wobble like a webble. Past experience has shown it will fade and I will be out walking the dog again very soon.
                                                      Best of luck to you and your husband. Please remember thesis my personal experience and you may want to talk to your dr about it.
                                                      Kathy D
                                                      I have experienced 3 infusions of Yervoy in fall of 2011. I then was started on Zelboraf to stop disease progression. In march of 2012 brain mets along with rising liver numbers indicated Zelboraf may be in the process of failing. So I was reintroduced to ipi at this point I am down 3 infusions with the fourth due may 31 , 2012. I have discovered I react strongly to IPI rashes, fatigue dizziness etc. first go round was more difficult. But I am noticing that as my infusions continue each one hits me a little harder weakness, dizziness. By the third week I start to feel more normal so one more infusion to go. As long as it works I will wobble like a webble. Past experience has shown it will fade and I will be out walking the dog again very soon.
                                                      Best of luck to you and your husband. Please remember thesis my personal experience and you may want to talk to your dr about it.
                                                      Kathy D
                                                      I have experienced 3 infusions of Yervoy in fall of 2011. I then was started on Zelboraf to stop disease progression. In march of 2012 brain mets along with rising liver numbers indicated Zelboraf may be in the process of failing. So I was reintroduced to ipi at this point I am down 3 infusions with the fourth due may 31 , 2012. I have discovered I react strongly to IPI rashes, fatigue dizziness etc. first go round was more difficult. But I am noticing that as my infusions continue each one hits me a little harder weakness, dizziness. By the third week I start to feel more normal so one more infusion to go. As long as it works I will wobble like a webble. Past experience has shown it will fade and I will be out walking the dog again very soon.
                                                      Best of luck to you and your husband. Please remember thesis my personal experience and you may want to talk to your dr about it.
                                                      Kathy D
                                                    susankstaub
                                                    Participant

                                                      Hello to all,

                                                      My wonderful husband who is 80, still working, exercises daily, has trainer and cycles twice weekly, has had face and arm melanomas, was diagnosed 12-11 with melanoma of lung and brain, he was treated with the new to our area CyberKnife radiation therapy which we cannot say enough good about,3 to the lung and one to brain, then Yervoy every 3wks, 4 times.  He did spectacular with everything, no side effects whatsoever, and approx. 4 days after last infusion, was hit with fatigue that has kept him from doing anything, has some dizziness with it.  Friday, 5-11-12, had ct scans, Mri's and will be followed up with Doc on 5-16, just wondered if anyone else had this side effect  and any info … lab results from 5-9 were all normal with only slight thyroid change, how long did it last?  There does not seem to be much info out there on it.

                                                      Hope I am following correct format, I am a newbie, 

                                                       

                                                      Our thoughts and prayers go out to all and many well wishes.

                                                       

                                                      Susan

                                                      susankstaub
                                                      Participant

                                                        Hello to all,

                                                        My wonderful husband who is 80, still working, exercises daily, has trainer and cycles twice weekly, has had face and arm melanomas, was diagnosed 12-11 with melanoma of lung and brain, he was treated with the new to our area CyberKnife radiation therapy which we cannot say enough good about,3 to the lung and one to brain, then Yervoy every 3wks, 4 times.  He did spectacular with everything, no side effects whatsoever, and approx. 4 days after last infusion, was hit with fatigue that has kept him from doing anything, has some dizziness with it.  Friday, 5-11-12, had ct scans, Mri's and will be followed up with Doc on 5-16, just wondered if anyone else had this side effect  and any info … lab results from 5-9 were all normal with only slight thyroid change, how long did it last?  There does not seem to be much info out there on it.

                                                        Hope I am following correct format, I am a newbie, 

                                                         

                                                        Our thoughts and prayers go out to all and many well wishes.

                                                         

                                                        Susan

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