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Ipi (yervoy) Maintenance Adjuvant Stage 3
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Ipi (yervoy) Maintenance Adjuvant Stage 3

› Forums › Ocular Melanoma Community › Ipi (yervoy) Maintenance Adjuvant Stage 3

  • Post
    • May 20, 2016 at 10:00 pm
    jennunicorn
    Participant

      I had my first maintenance infusion of Ipi (10mg/kg) yesterday. Since I took the first 4 main infusions really well with mild side effects I am hoping it stays that way through maintenance doses.

      I know not a lot of people have had the maintenance Ipi in the adjuvant setting, but I am wondering if you're out there, how did it go for you, did it feel similar to the main doses, did new/worse side effects pop up? Just curious how it has gone for other Stage 3ers on maintenance Ipi.

      Who knows if maintenance in the adjuvant setting is totally neccessary… but if my onc says I should go for it, then why not, I'll give it a whirl. My onc, Dr. Katy Tsai, will be at ASCO in June with a lot of other great melanoma specialists, her abstract is specifically about the efficacy and safety of PD-1 inhibitors with uveal melanoma, which is very rare but glad to see strides are being made toward finding good treatment solutions to those dealing with that rare form of melanoma. This conference should show some really great new research, which I am sure it gets better and more exciting each year. 

      Feeling pretty exhausted today, relaxing with my dog Cooper and binge watching comedy specials on Netflix.

      Next PET/CT is scheduled for June 7th.. oh joy.

       

    Viewing 14 reply threads
    • Replies
        • May 21, 2016 at 1:29 am
        momof4boys
        Participant
          I finished all of my maintenance doses, with my last one being in Dec of 14. I found it to be the same as all the rest. I never really had side effects except extreme fatigue the day of and the itching. I was 3b and it has kept everything at bay until now. Waiting to have a lung biopsy to see if I have recurred or a granuloma. Hope all goes well with you.
          • May 21, 2016 at 1:29 am
          momof4boys
          Participant
            I finished all of my maintenance doses, with my last one being in Dec of 14. I found it to be the same as all the rest. I never really had side effects except extreme fatigue the day of and the itching. I was 3b and it has kept everything at bay until now. Waiting to have a lung biopsy to see if I have recurred or a granuloma. Hope all goes well with you.
              • May 21, 2016 at 1:34 am
              jennunicorn
              Participant
                Thank you, sorry to hear you have to get a lung biopsy. I hope it’s not a recurrence or anything major.

                All the best,

                • May 21, 2016 at 1:34 am
                jennunicorn
                Participant
                  Thank you, sorry to hear you have to get a lung biopsy. I hope it’s not a recurrence or anything major.

                  All the best,

                  • May 21, 2016 at 1:34 am
                  jennunicorn
                  Participant
                    Thank you, sorry to hear you have to get a lung biopsy. I hope it’s not a recurrence or anything major.

                    All the best,

                  • May 21, 2016 at 1:29 am
                  momof4boys
                  Participant
                    I finished all of my maintenance doses, with my last one being in Dec of 14. I found it to be the same as all the rest. I never really had side effects except extreme fatigue the day of and the itching. I was 3b and it has kept everything at bay until now. Waiting to have a lung biopsy to see if I have recurred or a granuloma. Hope all goes well with you.
                    • May 21, 2016 at 6:03 pm
                    Polymath
                    Participant

                      Hi Jenn,

                      Good luck with the ipi.  I too suffered few side-effects during my rounds, and think you can expect similar results this time for you.  As you know I'm being treated at UCSF.  I have a different specialist but Dr. Tsai once filled in for another during a trial I was participating in. The trial was using an intralesional approach and required numerous punch biopsies of multiple tumors.  I was a veteran of this procedure at this point, and she was so gentle and concerned for my comfort, I almost had to grab the biopsy tool and do it myself. She was so comforting, but I told her to get on with it, as I knew exactly what was coming.  You are in good hands, and to others out there, UCSF has a wonderful Melanoma Center with every person I've dealt with offering wonderful and compassionate care.

                      Gary

                        

                      • May 21, 2016 at 6:03 pm
                      Polymath
                      Participant

                        Hi Jenn,

                        Good luck with the ipi.  I too suffered few side-effects during my rounds, and think you can expect similar results this time for you.  As you know I'm being treated at UCSF.  I have a different specialist but Dr. Tsai once filled in for another during a trial I was participating in. The trial was using an intralesional approach and required numerous punch biopsies of multiple tumors.  I was a veteran of this procedure at this point, and she was so gentle and concerned for my comfort, I almost had to grab the biopsy tool and do it myself. She was so comforting, but I told her to get on with it, as I knew exactly what was coming.  You are in good hands, and to others out there, UCSF has a wonderful Melanoma Center with every person I've dealt with offering wonderful and compassionate care.

                        Gary

                          

                        • May 21, 2016 at 6:03 pm
                        Polymath
                        Participant

                          Hi Jenn,

                          Good luck with the ipi.  I too suffered few side-effects during my rounds, and think you can expect similar results this time for you.  As you know I'm being treated at UCSF.  I have a different specialist but Dr. Tsai once filled in for another during a trial I was participating in. The trial was using an intralesional approach and required numerous punch biopsies of multiple tumors.  I was a veteran of this procedure at this point, and she was so gentle and concerned for my comfort, I almost had to grab the biopsy tool and do it myself. She was so comforting, but I told her to get on with it, as I knew exactly what was coming.  You are in good hands, and to others out there, UCSF has a wonderful Melanoma Center with every person I've dealt with offering wonderful and compassionate care.

                          Gary

                            

                            • May 21, 2016 at 6:53 pm
                            jennunicorn
                            Participant

                              Great to hear you had a good experience with Dr. Tsai. She's been incredible through all of this with me. It's the first time I've had a doctor so close to my age, but I find that a new fresh mind eager to find answers and be heavy in the research is exactly what I needed. That sounds like an intense trial, not sure if I could handle something like that! Thanks for the good thoughts, Gary, hope you're enjoying your Saturday.

                              • May 21, 2016 at 6:53 pm
                              jennunicorn
                              Participant

                                Great to hear you had a good experience with Dr. Tsai. She's been incredible through all of this with me. It's the first time I've had a doctor so close to my age, but I find that a new fresh mind eager to find answers and be heavy in the research is exactly what I needed. That sounds like an intense trial, not sure if I could handle something like that! Thanks for the good thoughts, Gary, hope you're enjoying your Saturday.

                                • May 21, 2016 at 6:53 pm
                                jennunicorn
                                Participant

                                  Great to hear you had a good experience with Dr. Tsai. She's been incredible through all of this with me. It's the first time I've had a doctor so close to my age, but I find that a new fresh mind eager to find answers and be heavy in the research is exactly what I needed. That sounds like an intense trial, not sure if I could handle something like that! Thanks for the good thoughts, Gary, hope you're enjoying your Saturday.

                                • May 21, 2016 at 6:34 pm
                                WithinMySkin
                                Participant
                                  Hey Jenn! Hoping your maintenance infusions are just like before with few side effects! I always enjoy cuddling with my fuzzies on the couch – between that, a good laugh, and a glass of wine, there’s no better therapy 🙂
                                  • May 21, 2016 at 6:34 pm
                                  WithinMySkin
                                  Participant
                                    Hey Jenn! Hoping your maintenance infusions are just like before with few side effects! I always enjoy cuddling with my fuzzies on the couch – between that, a good laugh, and a glass of wine, there’s no better therapy 🙂
                                      • May 21, 2016 at 6:55 pm
                                      jennunicorn
                                      Participant

                                        Thanks Lauren, that is definitely my favorite treatment combo! 🙂

                                        • May 21, 2016 at 6:55 pm
                                        jennunicorn
                                        Participant

                                          Thanks Lauren, that is definitely my favorite treatment combo! 🙂

                                          • May 21, 2016 at 6:55 pm
                                          jennunicorn
                                          Participant

                                            Thanks Lauren, that is definitely my favorite treatment combo! 🙂

                                          • May 21, 2016 at 6:34 pm
                                          WithinMySkin
                                          Participant
                                            Hey Jenn! Hoping your maintenance infusions are just like before with few side effects! I always enjoy cuddling with my fuzzies on the couch – between that, a good laugh, and a glass of wine, there’s no better therapy 🙂
                                            • May 21, 2016 at 9:14 pm
                                            keepthefaith11
                                            Participant
                                              Jenn, hoping you will have smooth sailing through your maintenance doses!
                                              • May 21, 2016 at 9:14 pm
                                              keepthefaith11
                                              Participant
                                                Jenn, hoping you will have smooth sailing through your maintenance doses!
                                                  • May 21, 2016 at 9:50 pm
                                                  jennunicorn
                                                  Participant

                                                    Thanks Annie, how is your dad doing?

                                                    • May 21, 2016 at 9:50 pm
                                                    jennunicorn
                                                    Participant

                                                      Thanks Annie, how is your dad doing?

                                                      • May 21, 2016 at 9:50 pm
                                                      jennunicorn
                                                      Participant

                                                        Thanks Annie, how is your dad doing?

                                                      • May 21, 2016 at 9:14 pm
                                                      keepthefaith11
                                                      Participant
                                                        Jenn, hoping you will have smooth sailing through your maintenance doses!
                                                        • May 21, 2016 at 11:50 pm
                                                        vickiaa0529
                                                        Participant

                                                          Hi Jenn

                                                          I bet the maintenace doses will be the same for you as previous. Good Luck and have fun with Cooper. Dogs are the best therapy ever

                                                          I was supposed to start ipi last Thursday but it was cancelled due to Cellutis leftover from the lymph node dissection. But the good part of that is that I may be able to hold out for Nivo which may be FDA approved after the ASCO in June. My oncologist is going too.

                                                          Thinking of you and sending positive thoughts

                                                          Cheers

                                                          Vicki

                                                           

                                                           

                                                           

                                                          • May 21, 2016 at 11:50 pm
                                                          vickiaa0529
                                                          Participant

                                                            Hi Jenn

                                                            I bet the maintenace doses will be the same for you as previous. Good Luck and have fun with Cooper. Dogs are the best therapy ever

                                                            I was supposed to start ipi last Thursday but it was cancelled due to Cellutis leftover from the lymph node dissection. But the good part of that is that I may be able to hold out for Nivo which may be FDA approved after the ASCO in June. My oncologist is going too.

                                                            Thinking of you and sending positive thoughts

                                                            Cheers

                                                            Vicki

                                                             

                                                             

                                                             

                                                              • May 21, 2016 at 11:58 pm
                                                              jennunicorn
                                                              Participant

                                                                Thank you Vicki, that'd be great if nivo gets approved in June and you can get on that, awesome stuff!

                                                                • May 21, 2016 at 11:58 pm
                                                                jennunicorn
                                                                Participant

                                                                  Thank you Vicki, that'd be great if nivo gets approved in June and you can get on that, awesome stuff!

                                                                  • May 21, 2016 at 11:58 pm
                                                                  jennunicorn
                                                                  Participant

                                                                    Thank you Vicki, that'd be great if nivo gets approved in June and you can get on that, awesome stuff!

                                                                  • May 21, 2016 at 11:50 pm
                                                                  vickiaa0529
                                                                  Participant

                                                                    Hi Jenn

                                                                    I bet the maintenace doses will be the same for you as previous. Good Luck and have fun with Cooper. Dogs are the best therapy ever

                                                                    I was supposed to start ipi last Thursday but it was cancelled due to Cellutis leftover from the lymph node dissection. But the good part of that is that I may be able to hold out for Nivo which may be FDA approved after the ASCO in June. My oncologist is going too.

                                                                    Thinking of you and sending positive thoughts

                                                                    Cheers

                                                                    Vicki

                                                                     

                                                                     

                                                                     

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