Thoughts on reaction to Ipi
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Thoughts on reaction to Ipi

› Forums › General Melanoma Community › Thoughts on reaction to Ipi

  • Post
    • February 6, 2013 at 1:39 pm
    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 8 reply threads
    • Replies
        • February 6, 2013 at 2:45 pm
        POW
        Participant

          Since ipi can cause severe colitis, I would not assume that your father's current abdominal pain is just the "same old pain" that  he had before. It might be the same old pain, or  it might be an ipi side effect, or both. In any case, your father should call his oncologist immediately to report the pain and steps should be taken to identify and remedy the problem. Tolerating pain while taking ipi is never a good idea.

          • February 6, 2013 at 2:45 pm
          POW
          Participant

            Since ipi can cause severe colitis, I would not assume that your father's current abdominal pain is just the "same old pain" that  he had before. It might be the same old pain, or  it might be an ipi side effect, or both. In any case, your father should call his oncologist immediately to report the pain and steps should be taken to identify and remedy the problem. Tolerating pain while taking ipi is never a good idea.

            • February 6, 2013 at 2:45 pm
            POW
            Participant

              Since ipi can cause severe colitis, I would not assume that your father's current abdominal pain is just the "same old pain" that  he had before. It might be the same old pain, or  it might be an ipi side effect, or both. In any case, your father should call his oncologist immediately to report the pain and steps should be taken to identify and remedy the problem. Tolerating pain while taking ipi is never a good idea.

              • February 7, 2013 at 4:02 am
              5374brian
              Participant

                POW is correct always disscuss everything that changes during the ipi treatment. My wife and  I are keeping notes to make sure that every visit that we keep track of any things that we feel might have changed. 

                • February 7, 2013 at 4:02 am
                5374brian
                Participant

                  POW is correct always disscuss everything that changes during the ipi treatment. My wife and  I are keeping notes to make sure that every visit that we keep track of any things that we feel might have changed. 

                  • February 7, 2013 at 4:02 am
                  5374brian
                  Participant

                    POW is correct always disscuss everything that changes during the ipi treatment. My wife and  I are keeping notes to make sure that every visit that we keep track of any things that we feel might have changed. 

                    • February 7, 2013 at 6:49 am
                    JerryfromFauq
                    Participant

                      Have they checked to see which of the DNA oncoproteins and DNA mutations your Father has?
                       And YES, report any/all problems,especially abdominal ones to the Oncologist immediately.  Ipi can cause serious colon problems.  I have a good friend that almost died from IPI colon problems (Now is NED!)

                      Do any of the surgical or pathology reports state  if his tumor was mucousal?  If so this can make a major difference in what I would recommend for treatment.  (My primary was in the mucousal tissue.)

                      • February 7, 2013 at 6:49 am
                      JerryfromFauq
                      Participant

                        Have they checked to see which of the DNA oncoproteins and DNA mutations your Father has?
                         And YES, report any/all problems,especially abdominal ones to the Oncologist immediately.  Ipi can cause serious colon problems.  I have a good friend that almost died from IPI colon problems (Now is NED!)

                        Do any of the surgical or pathology reports state  if his tumor was mucousal?  If so this can make a major difference in what I would recommend for treatment.  (My primary was in the mucousal tissue.)

                        • February 7, 2013 at 6:49 am
                        JerryfromFauq
                        Participant

                          Have they checked to see which of the DNA oncoproteins and DNA mutations your Father has?
                           And YES, report any/all problems,especially abdominal ones to the Oncologist immediately.  Ipi can cause serious colon problems.  I have a good friend that almost died from IPI colon problems (Now is NED!)

                          Do any of the surgical or pathology reports state  if his tumor was mucousal?  If so this can make a major difference in what I would recommend for treatment.  (My primary was in the mucousal tissue.)

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