anti-pd-1
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anti-pd-1

› Forums › Ocular Melanoma Community › anti-pd-1

  • This topic has 18 replies, 4 voices, and was last updated 13 years ago by lak.
  • Post
    • October 24, 2012 at 4:31 pm
    margaretrogers57
    Participant

    We're in the anti-pd-1 study at moffitt.  So far Dr. weber has only seen a few ocular primaries and no reponders only stable disease.  Here's hoping we change that to responders.  Anyone responded long term on this drug with an ocular primary.  We start on Oct. 31.  Any comments welcome.  Margaret

    We're in the anti-pd-1 study at moffitt.  So far Dr. weber has only seen a few ocular primaries and no reponders only stable disease.  Here's hoping we change that to responders.  Anyone responded long term on this drug with an ocular primary.  We start on Oct. 31.  Any comments welcome.  Margaret

Viewing 8 reply threads
  • Replies
      • October 24, 2012 at 7:55 pm
      Nan in Nebraska
      Participant

      Hi Margaret,

         I'm so glad Butch got in the trial. I would love to be able to get into an anti-pd1 trial. How is Butch feeling? How often will you have to travel to Florida? Sending prayers your way. Keep me in your prayers also, as I have scans the first part of Nov. and I'm hoping to see some reduction since my Ipi and cyberknife this past summer

      Hugs,

      Nan

      • October 24, 2012 at 7:55 pm
      Nan in Nebraska
      Participant

      Hi Margaret,

         I'm so glad Butch got in the trial. I would love to be able to get into an anti-pd1 trial. How is Butch feeling? How often will you have to travel to Florida? Sending prayers your way. Keep me in your prayers also, as I have scans the first part of Nov. and I'm hoping to see some reduction since my Ipi and cyberknife this past summer

      Hugs,

      Nan

      • October 24, 2012 at 7:55 pm
      Nan in Nebraska
      Participant

      Hi Margaret,

         I'm so glad Butch got in the trial. I would love to be able to get into an anti-pd1 trial. How is Butch feeling? How often will you have to travel to Florida? Sending prayers your way. Keep me in your prayers also, as I have scans the first part of Nov. and I'm hoping to see some reduction since my Ipi and cyberknife this past summer

      Hugs,

      Nan

        • October 26, 2012 at 3:49 pm
        margaretrogers57
        Participant

        We're glad to be in trial too.  We get 3 mg. dose.  Sure hope that's enough.  We have to be in fl. every 2 wks.  grueling, but that's what we have to do right now.  it's about an 8-9 hr. drive. ugh..Will definitely keep you in our prayers, friend…Butch is still feeling good right now.  Love ya, Margaret

        • October 26, 2012 at 3:49 pm
        margaretrogers57
        Participant

        We're glad to be in trial too.  We get 3 mg. dose.  Sure hope that's enough.  We have to be in fl. every 2 wks.  grueling, but that's what we have to do right now.  it's about an 8-9 hr. drive. ugh..Will definitely keep you in our prayers, friend…Butch is still feeling good right now.  Love ya, Margaret

        • October 26, 2012 at 3:49 pm
        margaretrogers57
        Participant

        We're glad to be in trial too.  We get 3 mg. dose.  Sure hope that's enough.  We have to be in fl. every 2 wks.  grueling, but that's what we have to do right now.  it's about an 8-9 hr. drive. ugh..Will definitely keep you in our prayers, friend…Butch is still feeling good right now.  Love ya, Margaret

      • November 16, 2012 at 9:29 pm
      CURE OM
      Participant

      Margaret, 

      Just wondering how the trial is going so far?  How is he feeling?  Any side effects we should be aware of?  

      Thinking of you,

      Molly

      • November 16, 2012 at 9:29 pm
      CURE OM
      Participant

      Margaret, 

      Just wondering how the trial is going so far?  How is he feeling?  Any side effects we should be aware of?  

      Thinking of you,

      Molly

      • November 16, 2012 at 9:29 pm
      CURE OM
      Participant

      Margaret, 

      Just wondering how the trial is going so far?  How is he feeling?  Any side effects we should be aware of?  

      Thinking of you,

      Molly

      • November 16, 2012 at 9:29 pm
      CURE OM
      Participant

      Margaret, 

      Just wondering how the trial is going so far?  How is he feeling?  Any side effects we should be aware of?  

      Thinking of you,

      Molly

        • November 18, 2012 at 12:38 am
        margaretrogers57
        Participant

        The anti-pd-1 trial is going good.  Butch's only side effects is slight fatique and slight flu-like symptoms for a few days after infusion.  He's had 2 now..The trip to Tampa (about 600 miles) every 2 weeks is the roughest thing so far..Will try to keep you guys informed.  Hugs, Margaret Rogers

        • November 21, 2012 at 7:14 am
        lak
        Participant

        Yes please keep us informed . When will he have his first scans? 600 m round trip every 2 weeks very hard I found 430m round trip every 3 weeks hard.  Thats what I had to do to get ipi- it got harder as the infusions happened as I got sick. I know every sevice station toilets on the whole route the last trip home we stopped at them all!

         

         

        • November 21, 2012 at 7:14 am
        lak
        Participant

        Yes please keep us informed . When will he have his first scans? 600 m round trip every 2 weeks very hard I found 430m round trip every 3 weeks hard.  Thats what I had to do to get ipi- it got harder as the infusions happened as I got sick. I know every sevice station toilets on the whole route the last trip home we stopped at them all!

         

         

        • November 21, 2012 at 7:14 am
        lak
        Participant

        Yes please keep us informed . When will he have his first scans? 600 m round trip every 2 weeks very hard I found 430m round trip every 3 weeks hard.  Thats what I had to do to get ipi- it got harder as the infusions happened as I got sick. I know every sevice station toilets on the whole route the last trip home we stopped at them all!

         

         

        • November 18, 2012 at 12:38 am
        margaretrogers57
        Participant

        The anti-pd-1 trial is going good.  Butch's only side effects is slight fatique and slight flu-like symptoms for a few days after infusion.  He's had 2 now..The trip to Tampa (about 600 miles) every 2 weeks is the roughest thing so far..Will try to keep you guys informed.  Hugs, Margaret Rogers

        • November 18, 2012 at 12:38 am
        margaretrogers57
        Participant

        The anti-pd-1 trial is going good.  Butch's only side effects is slight fatique and slight flu-like symptoms for a few days after infusion.  He's had 2 now..The trip to Tampa (about 600 miles) every 2 weeks is the roughest thing so far..Will try to keep you guys informed.  Hugs, Margaret Rogers

      • November 16, 2012 at 9:29 pm
      CURE OM
      Participant

      Margaret, 

      Just wondering how the trial is going so far?  How is he feeling?  Any side effects we should be aware of?  

      Thinking of you,

      Molly

      • November 16, 2012 at 9:29 pm
      CURE OM
      Participant

      Margaret, 

      Just wondering how the trial is going so far?  How is he feeling?  Any side effects we should be aware of?  

      Thinking of you,

      Molly

Viewing 8 reply threads

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