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anti-pd-1

Forums Ocular Melanoma Community anti-pd-1

  • Post
    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
        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

          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

            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

                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

                  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

                    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

                    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

                      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

                        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

                          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

                              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

                                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!

                                   

                                   

                                  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!

                                     

                                     

                                    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!

                                       

                                       

                                      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

                                        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

                                        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

                                          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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