We got Ipi!
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We got Ipi!

› Forums › General Melanoma Community › We got Ipi!

  • Post
    • December 2, 2011 at 1:32 pm
    justlittleoleme
    Participant

    My husband was randomized yesterday and he received the ipi arm of the trial!

    First infusion is Monday.

    Any suggestions for what I can do to alleviate symptoms?

    What can we expect after the infusion?

    Thanks!

    My husband was randomized yesterday and he received the ipi arm of the trial!

    First infusion is Monday.

    Any suggestions for what I can do to alleviate symptoms?

    What can we expect after the infusion?

    Thanks!

Viewing 17 reply threads
  • Replies
      • December 2, 2011 at 1:45 pm
      DonnaK
      Participant

      I'm so happy to hear the good news! I was beginning to think that no one was actually being randomized to Ipi…  It's about time someone lucked out.

      • December 2, 2011 at 1:45 pm
      DonnaK
      Participant

      I'm so happy to hear the good news! I was beginning to think that no one was actually being randomized to Ipi…  It's about time someone lucked out.

      • December 2, 2011 at 1:45 pm
      DonnaK
      Participant

      I'm so happy to hear the good news! I was beginning to think that no one was actually being randomized to Ipi…  It's about time someone lucked out.

      • December 2, 2011 at 2:27 pm
      Gene_S
      Participant

      Great news!!!  The first infusion was very easy for my husband with maybe a little itching.  He is even on the high dose of 10mg/kg and not the 3mg/kg.  He has mild symptoms throughout and he has been on it since Mar. 2011 with the 12 week clinical and on maintenance of every 12 weeks since.  As of the last scans overall he has regression of over 63% with some being totally gone.  He had liver, lung and one was on the neck/head area and pressing on the spine which made it inoperable (it is totally gone now).  He did have some thyroid problems but is on prednisone 5 mg in morning and 2.5 in evening.

      Good luck.

      Judy (loving wife and caregiver of Gene Stage IV)

      • December 2, 2011 at 2:27 pm
      Gene_S
      Participant

      Great news!!!  The first infusion was very easy for my husband with maybe a little itching.  He is even on the high dose of 10mg/kg and not the 3mg/kg.  He has mild symptoms throughout and he has been on it since Mar. 2011 with the 12 week clinical and on maintenance of every 12 weeks since.  As of the last scans overall he has regression of over 63% with some being totally gone.  He had liver, lung and one was on the neck/head area and pressing on the spine which made it inoperable (it is totally gone now).  He did have some thyroid problems but is on prednisone 5 mg in morning and 2.5 in evening.

      Good luck.

      Judy (loving wife and caregiver of Gene Stage IV)

        • December 2, 2011 at 9:09 pm
        petie540
        Participant

        I appear to be in the same clinical trial asyou are. would yo like to share experiences?

        • December 2, 2011 at 9:09 pm
        petie540
        Participant

        I appear to be in the same clinical trial asyou are. would yo like to share experiences?

        • December 5, 2011 at 2:14 pm
        Gene_S
        Participant

        That would be great.

        Gene

        • December 5, 2011 at 2:14 pm
        Gene_S
        Participant

        That would be great.

        Gene

        • December 5, 2011 at 2:14 pm
        Gene_S
        Participant

        That would be great.

        Gene

        • December 2, 2011 at 9:09 pm
        petie540
        Participant

        I appear to be in the same clinical trial asyou are. would yo like to share experiences?

      • December 2, 2011 at 2:27 pm
      Gene_S
      Participant

      Great news!!!  The first infusion was very easy for my husband with maybe a little itching.  He is even on the high dose of 10mg/kg and not the 3mg/kg.  He has mild symptoms throughout and he has been on it since Mar. 2011 with the 12 week clinical and on maintenance of every 12 weeks since.  As of the last scans overall he has regression of over 63% with some being totally gone.  He had liver, lung and one was on the neck/head area and pressing on the spine which made it inoperable (it is totally gone now).  He did have some thyroid problems but is on prednisone 5 mg in morning and 2.5 in evening.

      Good luck.

      Judy (loving wife and caregiver of Gene Stage IV)

      • December 2, 2011 at 4:04 pm
      bradcope1
      Participant

      Congratulations!! I was beginning to think it was impossible for someone to the ipi arm. Word is they are having a lot of trouble filling the interferon arm, so I think you defied the odds. We couldn't be happier for you.

      We got interferon, so we are now wait and see. Good luck. We are all hoping that this will prove to be a major step forward for stage 3.

      • December 2, 2011 at 4:04 pm
      bradcope1
      Participant

      Congratulations!! I was beginning to think it was impossible for someone to the ipi arm. Word is they are having a lot of trouble filling the interferon arm, so I think you defied the odds. We couldn't be happier for you.

      We got interferon, so we are now wait and see. Good luck. We are all hoping that this will prove to be a major step forward for stage 3.

      • December 2, 2011 at 4:04 pm
      bradcope1
      Participant

      Congratulations!! I was beginning to think it was impossible for someone to the ipi arm. Word is they are having a lot of trouble filling the interferon arm, so I think you defied the odds. We couldn't be happier for you.

      We got interferon, so we are now wait and see. Good luck. We are all hoping that this will prove to be a major step forward for stage 3.

      • December 2, 2011 at 5:19 pm
      EmilyandMike
      Participant

      Congrats!  I cant wait to hear the results of this trial in 2 years..which seems so far away at the moment.  I read your profile and wanted to ask – did your husband have an in-transit recurrence 5+ years after being diagnosed Stage 3?  What stage 3 was he in 2005?  Just curious because it scares me that melanoma can come back so long after being removed.  My husband is 2 years out with no treatment (stage 3a). Thanks! Emily

      • December 2, 2011 at 5:19 pm
      EmilyandMike
      Participant

      Congrats!  I cant wait to hear the results of this trial in 2 years..which seems so far away at the moment.  I read your profile and wanted to ask – did your husband have an in-transit recurrence 5+ years after being diagnosed Stage 3?  What stage 3 was he in 2005?  Just curious because it scares me that melanoma can come back so long after being removed.  My husband is 2 years out with no treatment (stage 3a). Thanks! Emily

      • December 2, 2011 at 5:19 pm
      EmilyandMike
      Participant

      Congrats!  I cant wait to hear the results of this trial in 2 years..which seems so far away at the moment.  I read your profile and wanted to ask – did your husband have an in-transit recurrence 5+ years after being diagnosed Stage 3?  What stage 3 was he in 2005?  Just curious because it scares me that melanoma can come back so long after being removed.  My husband is 2 years out with no treatment (stage 3a). Thanks! Emily

      • December 2, 2011 at 7:48 pm
      momof2kids
      Participant

      IPI / YERVOY CAN WORK! I'm another living proof subject!

      I'm Stage IV (Brain, Liver & Lung), so I had to really HOPE AND PRAY that it would work!

      Just came back from my 1st scan after 4 treatments of Yervoy, and my Lung & Liver tumors all SHRUNK!  Brain tumor (treated with Gamma Knife & still visible 2 months ago) was GONE!

      I had all 4 injections starting back on Sept. 2nd, and finished Nov. 4th 2011.  I NEVER HAD A SINGLE side effect. Not even one!  No upset stomach, no headaches, nothing!  I never watched my bloodwork results for the numbers people talk about, and YERVOY / IPI WORKED!

      Just believe that this drug can bring on miracles in shrinking these damn tumors, for short times, or long times (I've seen Lisa post about how her doctor said they've had people react to this drug for YEARS with it shrinking tumors!).  Now that's what I want to hear…I want to know that my immune system is ready to kick some ass and kick these cancer cells to the curb for now and hopefully for quite awhile!!

      Hope you guys get some good results on down the road and don't suffer any, or very few side effects!

       

      – Jackie

      • December 2, 2011 at 7:48 pm
      momof2kids
      Participant

      IPI / YERVOY CAN WORK! I'm another living proof subject!

      I'm Stage IV (Brain, Liver & Lung), so I had to really HOPE AND PRAY that it would work!

      Just came back from my 1st scan after 4 treatments of Yervoy, and my Lung & Liver tumors all SHRUNK!  Brain tumor (treated with Gamma Knife & still visible 2 months ago) was GONE!

      I had all 4 injections starting back on Sept. 2nd, and finished Nov. 4th 2011.  I NEVER HAD A SINGLE side effect. Not even one!  No upset stomach, no headaches, nothing!  I never watched my bloodwork results for the numbers people talk about, and YERVOY / IPI WORKED!

      Just believe that this drug can bring on miracles in shrinking these damn tumors, for short times, or long times (I've seen Lisa post about how her doctor said they've had people react to this drug for YEARS with it shrinking tumors!).  Now that's what I want to hear…I want to know that my immune system is ready to kick some ass and kick these cancer cells to the curb for now and hopefully for quite awhile!!

      Hope you guys get some good results on down the road and don't suffer any, or very few side effects!

       

      – Jackie

        • December 2, 2011 at 9:05 pm
        Richard_K
        Participant
        Jackie
        Love to read these kinds of posts. Well done!
        Dick
        • December 2, 2011 at 9:05 pm
        Richard_K
        Participant
        Jackie
        Love to read these kinds of posts. Well done!
        Dick
        • December 2, 2011 at 9:05 pm
        Richard_K
        Participant
        Jackie
        Love to read these kinds of posts. Well done!
        Dick
      • December 2, 2011 at 7:48 pm
      momof2kids
      Participant

      IPI / YERVOY CAN WORK! I'm another living proof subject!

      I'm Stage IV (Brain, Liver & Lung), so I had to really HOPE AND PRAY that it would work!

      Just came back from my 1st scan after 4 treatments of Yervoy, and my Lung & Liver tumors all SHRUNK!  Brain tumor (treated with Gamma Knife & still visible 2 months ago) was GONE!

      I had all 4 injections starting back on Sept. 2nd, and finished Nov. 4th 2011.  I NEVER HAD A SINGLE side effect. Not even one!  No upset stomach, no headaches, nothing!  I never watched my bloodwork results for the numbers people talk about, and YERVOY / IPI WORKED!

      Just believe that this drug can bring on miracles in shrinking these damn tumors, for short times, or long times (I've seen Lisa post about how her doctor said they've had people react to this drug for YEARS with it shrinking tumors!).  Now that's what I want to hear…I want to know that my immune system is ready to kick some ass and kick these cancer cells to the curb for now and hopefully for quite awhile!!

      Hope you guys get some good results on down the road and don't suffer any, or very few side effects!

       

      – Jackie

      • December 3, 2011 at 1:38 am
      BrianP
      Participant

      Congrats!  I'm getting randomized next week.  Hopefully I'll get the ipi arm as well and we can swap ipi experiences!

      Brian

      • December 3, 2011 at 1:38 am
      BrianP
      Participant

      Congrats!  I'm getting randomized next week.  Hopefully I'll get the ipi arm as well and we can swap ipi experiences!

      Brian

      • December 3, 2011 at 1:38 am
      BrianP
      Participant

      Congrats!  I'm getting randomized next week.  Hopefully I'll get the ipi arm as well and we can swap ipi experiences!

      Brian

Viewing 17 reply threads
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