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Yervoy and Nivolumab

Forums General Melanoma Community Yervoy and Nivolumab

  • Post
    Eileensulliv
    Participant

      Just wondering if anyone had yervoy and Nivulmab at the same time? Wondering what to expect, from a patient's perspective. I am to start a trial at Hopkins administering both concurrently… Assuming my brain MRI has no signs of cancer. That will be done Tuesday, and then surgery Thursday to remove the tumor in my back. I have read the consent form for the trial, and know of the possible side effects, but just thought I'd look for a patient's perspective. Thank you!

    Viewing 8 reply threads
    • Replies
        ed williams
        Participant

          Hi Eileen !  Last January 2014 I was lucky to get into a phase 3 trial of the two drugs. There are three arms to the trial which means we don't know exactly what we are getting. You can kind of tell based on the reported side effects and when scan show improvement. There is 1000 people on the study which last 2 years. My understanding is that early results will be reported at this years ASCO in June. I am considered to be a partial responder which means no new tumors and I had a small reduction in tumor size in the 2 tumors in my lung.  The trial has been pretty easy for me so far, with only fatigue to deal with. I had a minor small rash for the first month or so. The stats on the phase one trial are pretty impressive, they were reported at the 2014 ASCO meetings by Dr. Mario Sznol ( look it up on youtube).  There is also a video with Dr. Jeffrey Weber and Dr. Antoni Ribas called "Pretty Darn Impressive" Pd-1 data on (Medscape) dated June 12, 2014. I wish you the best of luck and I hope you get into the treatment. Ed

          ed williams
          Participant

            Hi Eileen !  Last January 2014 I was lucky to get into a phase 3 trial of the two drugs. There are three arms to the trial which means we don't know exactly what we are getting. You can kind of tell based on the reported side effects and when scan show improvement. There is 1000 people on the study which last 2 years. My understanding is that early results will be reported at this years ASCO in June. I am considered to be a partial responder which means no new tumors and I had a small reduction in tumor size in the 2 tumors in my lung.  The trial has been pretty easy for me so far, with only fatigue to deal with. I had a minor small rash for the first month or so. The stats on the phase one trial are pretty impressive, they were reported at the 2014 ASCO meetings by Dr. Mario Sznol ( look it up on youtube).  There is also a video with Dr. Jeffrey Weber and Dr. Antoni Ribas called "Pretty Darn Impressive" Pd-1 data on (Medscape) dated June 12, 2014. I wish you the best of luck and I hope you get into the treatment. Ed

            ed williams
            Participant

              Hi Eileen !  Last January 2014 I was lucky to get into a phase 3 trial of the two drugs. There are three arms to the trial which means we don't know exactly what we are getting. You can kind of tell based on the reported side effects and when scan show improvement. There is 1000 people on the study which last 2 years. My understanding is that early results will be reported at this years ASCO in June. I am considered to be a partial responder which means no new tumors and I had a small reduction in tumor size in the 2 tumors in my lung.  The trial has been pretty easy for me so far, with only fatigue to deal with. I had a minor small rash for the first month or so. The stats on the phase one trial are pretty impressive, they were reported at the 2014 ASCO meetings by Dr. Mario Sznol ( look it up on youtube).  There is also a video with Dr. Jeffrey Weber and Dr. Antoni Ribas called "Pretty Darn Impressive" Pd-1 data on (Medscape) dated June 12, 2014. I wish you the best of luck and I hope you get into the treatment. Ed

              BrianP
              Participant

                Eileen,

                Sounds like you are in a great trial if you are getting concurrent ipi and nivo.  I've been in a sequential trial of ipi and nivo for about 18 months.  My sequence was nivo then ipi and now back on nivo for the remainder of the trial.  As you have probably heard the results are pretty impressive with concurrent treatment but the side effects have been more prevalent.  The obivous ones are colitis, diarhrea, and rashes.  Big emphasis on the colitis and diarhea.  Really important to stay on top of it.  If you catch it early there's a much better chance you can stay on top of it.  I heard an expert say that every day you delay getting treated for your side effects could result in another week of getting treated for your side effects which often delays your melanoma treatment.  One side effect you should watch for is hypophysitis.  It's an autoimmune reaction to the treatment which causes a swelling of the pituitary gland.  Sometimes it comes on as a severe headache and sometimes it starts as a mild sinus like headache that gets worse over time.  If you have any unusually long lasting headaches you want to let your doctor know right away.  Best of luck to you.

                Brian

                BrianP
                Participant

                  Eileen,

                  Sounds like you are in a great trial if you are getting concurrent ipi and nivo.  I've been in a sequential trial of ipi and nivo for about 18 months.  My sequence was nivo then ipi and now back on nivo for the remainder of the trial.  As you have probably heard the results are pretty impressive with concurrent treatment but the side effects have been more prevalent.  The obivous ones are colitis, diarhrea, and rashes.  Big emphasis on the colitis and diarhea.  Really important to stay on top of it.  If you catch it early there's a much better chance you can stay on top of it.  I heard an expert say that every day you delay getting treated for your side effects could result in another week of getting treated for your side effects which often delays your melanoma treatment.  One side effect you should watch for is hypophysitis.  It's an autoimmune reaction to the treatment which causes a swelling of the pituitary gland.  Sometimes it comes on as a severe headache and sometimes it starts as a mild sinus like headache that gets worse over time.  If you have any unusually long lasting headaches you want to let your doctor know right away.  Best of luck to you.

                  Brian

                  BrianP
                  Participant

                    Eileen,

                    Sounds like you are in a great trial if you are getting concurrent ipi and nivo.  I've been in a sequential trial of ipi and nivo for about 18 months.  My sequence was nivo then ipi and now back on nivo for the remainder of the trial.  As you have probably heard the results are pretty impressive with concurrent treatment but the side effects have been more prevalent.  The obivous ones are colitis, diarhrea, and rashes.  Big emphasis on the colitis and diarhea.  Really important to stay on top of it.  If you catch it early there's a much better chance you can stay on top of it.  I heard an expert say that every day you delay getting treated for your side effects could result in another week of getting treated for your side effects which often delays your melanoma treatment.  One side effect you should watch for is hypophysitis.  It's an autoimmune reaction to the treatment which causes a swelling of the pituitary gland.  Sometimes it comes on as a severe headache and sometimes it starts as a mild sinus like headache that gets worse over time.  If you have any unusually long lasting headaches you want to let your doctor know right away.  Best of luck to you.

                    Brian

                    Eileensulliv
                    Participant

                      Thank you so much for your responses! The first time I had melanoma was in 2006 and all I had to do was have surgery… No treatment afterwards at all. But now with this in-transit recurrence with mets in my bowel and lung, this time it's just completely different… And I truly appreciate getting advice from others who unfortunately are going through similar things! Thank you very much!

                      Eileensulliv
                      Participant

                        Thank you so much for your responses! The first time I had melanoma was in 2006 and all I had to do was have surgery… No treatment afterwards at all. But now with this in-transit recurrence with mets in my bowel and lung, this time it's just completely different… And I truly appreciate getting advice from others who unfortunately are going through similar things! Thank you very much!

                          dvd
                          Participant

                            Eileen –

                            I started the ipi (3mg/kg) combined with either nivo (1mg/kg) or a placebo Jan 2014. My advanced Stage 4 melanoma (mets in scalp, neck, lungs, vertebrae, ribs and leg) quickly retreated and after the first 4 combined infusions, each 3 weeks apart, all tumors were gone with no evidence of disease on PET/CT. Side effects for me included a rash and fatigue. In general, the treatment was easily tolerated. As I was about to start the "maintenance phase" of the trial (infusions of either nivo or placebo every 2 weeks) my liver enzymes spiked to about 10X normal, although I was asymptomatic. This Grade 4 side effect was successfully treated with steroids, but made me ineligible to continue on in the trial. Luckily, I have remained NED.

                              Best of luck with your treatment. Keep vigilant for side effects – don't be hesitant to tell your oncologist of anything unusual going on, even if you don't think it means much. Side effects can and should be treated early, and don't necessarily mean ineligibility for a trial. Side effects in combo therapy are common, but treatments may be able to be continued if they are under control.

                            David

                            dvd
                            Participant

                              Eileen –

                              I started the ipi (3mg/kg) combined with either nivo (1mg/kg) or a placebo Jan 2014. My advanced Stage 4 melanoma (mets in scalp, neck, lungs, vertebrae, ribs and leg) quickly retreated and after the first 4 combined infusions, each 3 weeks apart, all tumors were gone with no evidence of disease on PET/CT. Side effects for me included a rash and fatigue. In general, the treatment was easily tolerated. As I was about to start the "maintenance phase" of the trial (infusions of either nivo or placebo every 2 weeks) my liver enzymes spiked to about 10X normal, although I was asymptomatic. This Grade 4 side effect was successfully treated with steroids, but made me ineligible to continue on in the trial. Luckily, I have remained NED.

                                Best of luck with your treatment. Keep vigilant for side effects – don't be hesitant to tell your oncologist of anything unusual going on, even if you don't think it means much. Side effects can and should be treated early, and don't necessarily mean ineligibility for a trial. Side effects in combo therapy are common, but treatments may be able to be continued if they are under control.

                              David

                              Eileensulliv
                              Participant

                                Thank you for your response! I was happy to show my family these responses, as they have increased my hope! I had the brain MRI done Tuesday morning and surgery to remove the tumor in my back… Just before they wheeled me into the OR, they gave me the good news that my brain scan showed no lesions, so this means I can be admitted to the trial very soon! I am so thankful for the support I have received from this board… I wish all of you the very best!

                                Eileensulliv
                                Participant

                                  Thank you for your response! I was happy to show my family these responses, as they have increased my hope! I had the brain MRI done Tuesday morning and surgery to remove the tumor in my back… Just before they wheeled me into the OR, they gave me the good news that my brain scan showed no lesions, so this means I can be admitted to the trial very soon! I am so thankful for the support I have received from this board… I wish all of you the very best!

                                  Eileensulliv
                                  Participant

                                    Thank you for your response! I was happy to show my family these responses, as they have increased my hope! I had the brain MRI done Tuesday morning and surgery to remove the tumor in my back… Just before they wheeled me into the OR, they gave me the good news that my brain scan showed no lesions, so this means I can be admitted to the trial very soon! I am so thankful for the support I have received from this board… I wish all of you the very best!

                                    dvd
                                    Participant

                                      Eileen –

                                      I started the ipi (3mg/kg) combined with either nivo (1mg/kg) or a placebo Jan 2014. My advanced Stage 4 melanoma (mets in scalp, neck, lungs, vertebrae, ribs and leg) quickly retreated and after the first 4 combined infusions, each 3 weeks apart, all tumors were gone with no evidence of disease on PET/CT. Side effects for me included a rash and fatigue. In general, the treatment was easily tolerated. As I was about to start the "maintenance phase" of the trial (infusions of either nivo or placebo every 2 weeks) my liver enzymes spiked to about 10X normal, although I was asymptomatic. This Grade 4 side effect was successfully treated with steroids, but made me ineligible to continue on in the trial. Luckily, I have remained NED.

                                        Best of luck with your treatment. Keep vigilant for side effects – don't be hesitant to tell your oncologist of anything unusual going on, even if you don't think it means much. Side effects can and should be treated early, and don't necessarily mean ineligibility for a trial. Side effects in combo therapy are common, but treatments may be able to be continued if they are under control.

                                      David

                                    Eileensulliv
                                    Participant

                                      Thank you so much for your responses! The first time I had melanoma was in 2006 and all I had to do was have surgery… No treatment afterwards at all. But now with this in-transit recurrence with mets in my bowel and lung, this time it's just completely different… And I truly appreciate getting advice from others who unfortunately are going through similar things! Thank you very much!

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