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third session of Ipi & Temador

Forums Cutaneous Melanoma Community third session of Ipi & Temador

  • Post
    ipi in DC
    Participant

    Hey everybody,

    Just wanted to update you on trial, 6 weeks in, 2 ipi infusions and Temador doses prior to this trip.

    First for those who know my old handle, I changed it to ipi in DC instead of Mel in DC hope to one day soon change it to Mel out of DC.

    Hey everybody,

    Just wanted to update you on trial, 6 weeks in, 2 ipi infusions and Temador doses prior to this trip.

    First for those who know my old handle, I changed it to ipi in DC instead of Mel in DC hope to one day soon change it to Mel out of DC.

    We went to MD last Wednesday had CT & MRI on Thursday and then visited with Dr Bedikian on Friday. They were happy with the results so we could stay on the trial :) I have a subcutanous nodule on my lower back that shrunk from 12mm to 9mm and the nodules in the lungs did increase a little in size but it was half the growth than the previous six weeks growth prior to starting the trial.

    Since the latest Ipi infusion and taking the Temador the nodule on my back has shrunk further and is almost hard to find. I contribute that to the Temador it did shrink the first dose also but regained its size a week later, but the second dose it shrunk and stayed smaller. So hopefully the Temador will breakup the nodules and make it easier for the Ipi modified T cells to come in and finish the job to totally destroy the remaining cells, which is how they discribed they were hoping this combo work. 

    The side effects I am having to date is light constipation just while taking the Temador and nausea meds. Feel nasty for the last day of Temador and two days following (fells like the body has poison flowing through everywhere, which it is) then feel great until next dose. Light on and off headache during fisrts week after infusion. Skin rash I beleive from the Ipi on lower back, armppits, pelvic area at belt line. top of feet. The rash seems to like the hairy areas that hold sweat and heat. And rash type bumps spread out on forearms. Have a constant walking itch over entire body which I think is from the chemo (stops the body and cancer cells from dividing) drying out the skin, starts to get better just before next dose.

    My bloodwork has stayed "perfect" on all counts according to Sandy  the research nurse (she was very suprised), which is great, I am less susceptable to infection.

    Thats about it, please feel free to ask any questions or thoughts,

    David

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  • Replies
      Jim in Denver
      Participant

      Hi David,

      Thanks for the update.  Glad to hear you are feeling positive about how the trial is going.  Your side effects are very similar to mine, as we have previously noted.  The treatment is very tolerable, in my experience.  Like the new name too :)  Best wishes to you, as always.

      Regards,

      Jim

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      Jim in Denver
      Participant

      Hi David,

      Thanks for the update.  Glad to hear you are feeling positive about how the trial is going.  Your side effects are very similar to mine, as we have previously noted.  The treatment is very tolerable, in my experience.  Like the new name too :)  Best wishes to you, as always.

      Regards,

      Jim

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      ValinMtl
      Participant

      Hi David, Thanks for the update…Sounds VERY promising.  I am on round one of ipi but alas no temodar included (Montreal, Canada). Your input is greatly appreciated.  Val

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      ValinMtl
      Participant

      Hi David, Thanks for the update…Sounds VERY promising.  I am on round one of ipi but alas no temodar included (Montreal, Canada). Your input is greatly appreciated.  Val

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        killmel
        Participant

        Hi Valin,

         

        Good to see you started IPI. Any side effects?? If so, what are you doing to combat side effects.

        Contiunued good luck to everyone on IPI..you are brave pioneers.

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        killmel
        Participant

        Hi Valin,

         

        Good to see you started IPI. Any side effects?? If so, what are you doing to combat side effects.

        Contiunued good luck to everyone on IPI..you are brave pioneers.

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        ValinMtl
        Participant

        Dear 'anonymous', I'm doing VERY WELL thanks.  Rather intimidates me…how come I'm feeling so well?  I've only had one treatment so maybe side effects might progress, not that I will go looking for trouble. I do have a few headaches here and there which must be result of this since I'm not headache prone. I don't see any change in my delightful cutaneous tumors on my right leg but let's hope and pray that eventually ipi sends them packing.  Val

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        ValinMtl
        Participant

        Dear 'anonymous', I'm doing VERY WELL thanks.  Rather intimidates me…how come I'm feeling so well?  I've only had one treatment so maybe side effects might progress, not that I will go looking for trouble. I do have a few headaches here and there which must be result of this since I'm not headache prone. I don't see any change in my delightful cutaneous tumors on my right leg but let's hope and pray that eventually ipi sends them packing.  Val

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