Taken ipi/Yervoy? How did your treatments and signs change?

› Forums › General Melanoma Community › Taken ipi/Yervoy? How did your treatments and signs change?

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    • January 20, 2014 at 6:30 am
    Patina
    Participant
      My Mom was diagnosed wit stage IV and has had 2 infusions of ipi and has also had a gamma knife radiation procedure for 8 brain nets 4 days before the first infusion. She had 18 tumors on her scalp, 1 large tumor behind her ear and 1 large tumor in a lymph node on her neck. These are very visible compared to those in her brain or trunk and I’d like to know others experiences with tumors like these?

      My question is directed to those of you who have had ipi and the results you had as you received the ipi for any visible tumors.

      In the first 2 weeks the tumor on her neck shrunk about 50% and those on her head became hard. In the week after her second infusion the tumors on her head seem to be getting smaller, as does the one on her neck.

      She is not experiencing anything but extreme tiredness and a bit of diarrhea now. She had a very upset stomach, diarrhea, red spots, heavy breathing, with chest pain just after the first infusion.

      If any of you have had tumors visibly change early into treatment can you tell me how your overall treatment went? Did your doctor later say that a early response indicated a higher probability of NED at a later response?

      FYI
      My Mom has had her followup on the gamma radiation for her brain. The tumors are shrinking and there are no new ones.

      Also, she has been taking 1000 mg of cannabinoids and 4000 mg of Tumeric daily. And eating sauerkraut daily since the second infusion. I don’t know if the first two things are doing anything, but the sauerkraut is good for the gut and some take it to help with colitis…. Not all sauerkraut is equal. So you should look it up if you want to try it.

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        • January 20, 2014 at 4:53 pm
        Gene_S
        Participant

          Hello,

          Hope this treatment is successful for your mother.  My husband was taking IPI with GM-CSF clinical trial which started in Mar. 2011 when he was stage IV with lesions in his liver, lungs, an unresectable one pushing on the cervical spine and 3 small skin lesions in a scar from a previous lesion removal.  We watched the ones on the surface shrink and disappear and the unresectable one go down as well as it was filling in the cavity from a previous lesion.

          If you would like to read more check out his profile.  He is now NED (no evidence of disease since Oct. 2012 and his clinical trial had maintenance doses of the meds and he just went off of them in Dec. of 2013.

          Judy (loving wife of Gene Stage IV and now NED)

          • January 20, 2014 at 4:53 pm
          Gene_S
          Participant

            Hello,

            Hope this treatment is successful for your mother.  My husband was taking IPI with GM-CSF clinical trial which started in Mar. 2011 when he was stage IV with lesions in his liver, lungs, an unresectable one pushing on the cervical spine and 3 small skin lesions in a scar from a previous lesion removal.  We watched the ones on the surface shrink and disappear and the unresectable one go down as well as it was filling in the cavity from a previous lesion.

            If you would like to read more check out his profile.  He is now NED (no evidence of disease since Oct. 2012 and his clinical trial had maintenance doses of the meds and he just went off of them in Dec. of 2013.

            Judy (loving wife of Gene Stage IV and now NED)

            • January 20, 2014 at 4:53 pm
            Gene_S
            Participant

              Hello,

              Hope this treatment is successful for your mother.  My husband was taking IPI with GM-CSF clinical trial which started in Mar. 2011 when he was stage IV with lesions in his liver, lungs, an unresectable one pushing on the cervical spine and 3 small skin lesions in a scar from a previous lesion removal.  We watched the ones on the surface shrink and disappear and the unresectable one go down as well as it was filling in the cavity from a previous lesion.

              If you would like to read more check out his profile.  He is now NED (no evidence of disease since Oct. 2012 and his clinical trial had maintenance doses of the meds and he just went off of them in Dec. of 2013.

              Judy (loving wife of Gene Stage IV and now NED)

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