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3rd Cycle of Ipi/Temodar

Forums General Melanoma Community 3rd Cycle of Ipi/Temodar

  • Post
    Jim in Denver
    Participant

    Hi All,

    Hi All,

    Had scans at MDA on Monday this week @ 6 weeks into the Trial.  6 lung mets showed aggregate growth of 13% – well within the 25% growth allowed to stay on the Trial.  Dr. Hwu said that it is common to see some inflammation in response to Ipi, and it is impossible to differentiate between progression and inflammation.  No new mets – also required to stay on this Trial – so the scans we good for me.  Had 3rd Ipi infusion on Tuesday.  Flew in to Houston Monday and back home Tuesday.  I feel very good and am able to do everything I was able to do before starting the Trial, so no complaints.

    The Study Nurse went though her list of side effects again.  Seems like diarrhea has been the most common issue in this trial (from Ipi).  Dr. Hwu told me up front that Temodar often produces constipation, so that it tends to counteract the diarrhea from Ipi, and it certainly has for me.  I am actually mildly constipated from the Temodar while I am taking it (4 days, 400 mg each day), but nothing uncomfortable.  My other side effects have been itching (face, neck, and chest), occasional rash (from sun exposure and/or sunscreen), and occasional mild headaches (mainly from Temodar).  I have also developed a small patch of white skin (Vitiligo) on my chest, which is not uncommon.  Other side effects the nurse asked about:  nausea, fatigue, trouble focusing, mouth sores, tingling or loss of feeling in extremities (neuropathy).  I told her I do actually find that I do seem to have more trouble focusing and feel a bit spacy early on in the cycle, but that maybe it just a symptom of age :)

    So that is my update.  The 12 week scans should be more telling regarding responsiveness, although Dr. Hwu reiterated that delayed response to Ipi is common.  Responses beyond 12 weeks are not unusual, but are usually apparent by 24 weeks.  Individual range and timing of responses show considerable variation, as many of you have read/heard before.  This does probably not add much to our collective knowledge about Ipi on this board, but I thought I should post how things are going for me in addition to my occasional post to my friends here on MPIP.

    Last, but certainly not least,  I hope to go see Jerry Ellis in rehab in Colorado Springs next week.  All of us can draw inspiration, strength, and willingness to help others from Jerry's example.  He is one of a good number of remarkable people I have been fortunate to get to know on this board as each of us go forward on our journeys.  Like many of you, he had offered others here great support and a wealth of information, along with a wonderful sense of humor.  May we all follow his example!  Thank you all so very much for your ongoing support – it means very much to me.

    Many Thanks,

    Jim

     

     

     

     

     

     

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  • Replies
      molly
      Participant

      Jim, so happy for your good report! Just great to hear that you are able to continue doing your regular routine.

      Tell Jerry hello from all of his buddies here on the board.

      Take care,

      molly

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      molly
      Participant

      Jim, so happy for your good report! Just great to hear that you are able to continue doing your regular routine.

      Tell Jerry hello from all of his buddies here on the board.

      Take care,

      molly

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      King
      Participant

      Jim,

       

      Thanks for the thorough update.  This sharing of experiences and knowledge is so important.  Congratulations on your scan results..it sounds very promising to me.

      I also admire your positive attitude.

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      King
      Participant

      Jim,

       

      Thanks for the thorough update.  This sharing of experiences and knowledge is so important.  Congratulations on your scan results..it sounds very promising to me.

      I also admire your positive attitude.

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      ValinMtl
      Participant

      Thank you Jim for keeping us posted.  You seem to be reacting well to the ipi with the exception of a few minor side effects (which if I recall, the old pros tell us is a good thing..shows it's working!).  I will be keeping an eye out for these side effects..so far the only one I have had with the first infusion are a few mild headaches.  Your information is VERY MUCH APPRECIATED!! 

      When you see Jerry give him a hug from all of us!  He has been such an inspiration.  Val xx

       

      P.S.  I'm repeating my mantra…work ipi, work ipi……for all those taking it! 

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      ValinMtl
      Participant

      Thank you Jim for keeping us posted.  You seem to be reacting well to the ipi with the exception of a few minor side effects (which if I recall, the old pros tell us is a good thing..shows it's working!).  I will be keeping an eye out for these side effects..so far the only one I have had with the first infusion are a few mild headaches.  Your information is VERY MUCH APPRECIATED!! 

      When you see Jerry give him a hug from all of us!  He has been such an inspiration.  Val xx

       

      P.S.  I'm repeating my mantra…work ipi, work ipi……for all those taking it! 

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      Sharyn
      Participant

      Hi Jim,

      Thank you so much for such a thorough update. I'll be starting Ipi next week, so it's really helpful to know how others are doing with it who are further into the trial. It's also good to know that inflammation can be confused with progression, and that many patients are late responders. A big hello and bear hug for Jerry when you see him. Now that's one guy I'd love to meet! Good luck as you continue with this trial.

      Hugs

      Sharyn

      Stage IV

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      Sharyn
      Participant

      Hi Jim,

      Thank you so much for such a thorough update. I'll be starting Ipi next week, so it's really helpful to know how others are doing with it who are further into the trial. It's also good to know that inflammation can be confused with progression, and that many patients are late responders. A big hello and bear hug for Jerry when you see him. Now that's one guy I'd love to meet! Good luck as you continue with this trial.

      Hugs

      Sharyn

      Stage IV

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