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Thoughts on reaction to Ipi

Forums General Melanoma Community Thoughts on reaction to Ipi

  • Post
    MarcusW
    Participant

      First of all, may I thank the users of this forum for the rich source of information and support they have provided to me for the best part of a year now. After finding out my father had inoperable stage 4 melanoma last year, I have been a regular visitor to this website and find the strength, determination and bravery of the contributors both humbling and inspiring.

      First of all, may I thank the users of this forum for the rich source of information and support they have provided to me for the best part of a year now. After finding out my father had inoperable stage 4 melanoma last year, I have been a regular visitor to this website and find the strength, determination and bravery of the contributors both humbling and inspiring.

      My father's melanoma began on his penis, which, I understand, is very unusual. After partial amputation, the melanoma spread via the lymph nodes in his groin to his stomach. He experiences a great deal of pain and eating makes it a lot worse.

      He received six doses of Decarbazine, which helped enormously. He was scanned twice, each time after three doses, and, on each occasion, the tumours had either shrunk or stabilised. About six weeks after the last dose of Decarbazine, my father started to get quite ill again – he started to lose weight rapidly again and the abdominal pain returned with a vengeance. It was the oncologist’s opinion that, if the melanoma had begun to grow again so soon after the last dose of Decarbazine, more Decarbazine was not the way forward. He was therefore offered Ipi. Almost three weeks after the first infusion, a large patch of vitiligo has appeared on his arm and he has constant abdominal pain, especially in his right side. I am aware that this could be his kidney, and blood tests revealed that his kidney function was not optimal. However, given that they went ahead and gave him his second infusion yesterday, I am assuming that they considered it safe to do so.

      My father is now telling me that a lump has appeared in his stomach. Am I being hopeful, or could this all be evidence that he is responding to Ipi already? I have read many times on this site that depigmentation and inflammation of the tumours are all positive signs. I would appreciate your thoughts.

      Thank you,

      Marcus

    Viewing 5 reply threads
    • Replies
        Marcia1
        Participant

          Marcus:  My Mom, who is 86, had her melanoma start at her Vulva last November and it has spread to her lung.  She was on Temador for 6 months and took her 1st dose of ipi January 21.  She started having constant diarrhea last week and is now in the hospital.  She was to have her 2nd dose of Ipi (Yervoy) next Monday, but I have an idea that will be postponed.  It sounds like the Yervoy must be working on your Dad.  I have heard really good things about the Yervoy working.    My Mother is determined to continue even though she has the side effects.   Good luck to your Dad.

          Marcia1
          Participant

            Marcus:  My Mom, who is 86, had her melanoma start at her Vulva last November and it has spread to her lung.  She was on Temador for 6 months and took her 1st dose of ipi January 21.  She started having constant diarrhea last week and is now in the hospital.  She was to have her 2nd dose of Ipi (Yervoy) next Monday, but I have an idea that will be postponed.  It sounds like the Yervoy must be working on your Dad.  I have heard really good things about the Yervoy working.    My Mother is determined to continue even though she has the side effects.   Good luck to your Dad.

            Marcia1
            Participant

              Marcus:  My Mom, who is 86, had her melanoma start at her Vulva last November and it has spread to her lung.  She was on Temador for 6 months and took her 1st dose of ipi January 21.  She started having constant diarrhea last week and is now in the hospital.  She was to have her 2nd dose of Ipi (Yervoy) next Monday, but I have an idea that will be postponed.  It sounds like the Yervoy must be working on your Dad.  I have heard really good things about the Yervoy working.    My Mother is determined to continue even though she has the side effects.   Good luck to your Dad.

              5374brian
              Participant

                My wife is Stage 4 melanoma and just had her 2nd treatment on Tuesday the 5th. She is a patient at Moffit in Tampa Fl. The team told us that the tumors would have inflammation as the Tcell started doing their job. We also were told that the tumors would change in form and size. As the immune system fights the tumors don't shrink uniform. You may also see new tumors pop up that were not visible before. Her tumors do not all inflame at the same time. They all seem to rotate from day to day. Going through others stories many have the same experience. The only other side effect so far is fatigue and easily awaken at night. We disscued this with Moffit yesterday and we are trying melatonin to help with sleep before trying a prescription. We wish your father a recovery on ipi. 

                5374brian
                Participant

                  My wife is Stage 4 melanoma and just had her 2nd treatment on Tuesday the 5th. She is a patient at Moffit in Tampa Fl. The team told us that the tumors would have inflammation as the Tcell started doing their job. We also were told that the tumors would change in form and size. As the immune system fights the tumors don't shrink uniform. You may also see new tumors pop up that were not visible before. Her tumors do not all inflame at the same time. They all seem to rotate from day to day. Going through others stories many have the same experience. The only other side effect so far is fatigue and easily awaken at night. We disscued this with Moffit yesterday and we are trying melatonin to help with sleep before trying a prescription. We wish your father a recovery on ipi. 

                  5374brian
                  Participant

                    My wife is Stage 4 melanoma and just had her 2nd treatment on Tuesday the 5th. She is a patient at Moffit in Tampa Fl. The team told us that the tumors would have inflammation as the Tcell started doing their job. We also were told that the tumors would change in form and size. As the immune system fights the tumors don't shrink uniform. You may also see new tumors pop up that were not visible before. Her tumors do not all inflame at the same time. They all seem to rotate from day to day. Going through others stories many have the same experience. The only other side effect so far is fatigue and easily awaken at night. We disscued this with Moffit yesterday and we are trying melatonin to help with sleep before trying a prescription. We wish your father a recovery on ipi. 

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