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 6:34 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 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 9:14 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 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 11:50 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!

Viewing 14 reply threads

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