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Crazy immune system!

Forums General Melanoma Community Crazy immune system!

  • Post
    Jan in OC
    Participant

    Sooo….when my husband broke his humerus bone in his right shoulder, the ER put an "immobilizer" on him.  Everywhere the elastic touched his skin, he broke out with nasty rash and hugh blisters!  Our PCP and Onc consulted and finally decided that the IPI infusion "assisted" his body's severe contact allergic reaction.  Unfortunately, they had to give him steroids, which the ONC said would decrease the effectiveness of the IPI :(  

    Sooo….when my husband broke his humerus bone in his right shoulder, the ER put an "immobilizer" on him.  Everywhere the elastic touched his skin, he broke out with nasty rash and hugh blisters!  Our PCP and Onc consulted and finally decided that the IPI infusion "assisted" his body's severe contact allergic reaction.  Unfortunately, they had to give him steroids, which the ONC said would decrease the effectiveness of the IPI :(  

    Doc said the steroids will make him grouchy.  "too late, he's already there"!!!  I have been wearing my "nurse jackie uniform" all week. 

    We go to the Orthopedic doc on Monday to check his arm swelling (lymphadema is not helping)!  On Wednesday, we go to UCLA for his second IPI infusion. RadOnc called me today and scheduled his brain MRI and mask simulation on Wed, 2/23, then SRS can be scheduled (maybe the week after, can't wait). I hope there is still only one small tumor.  In between all of that, we will be getting treatment for the blistering and broken arm.  Keeps us busy and out of trouble!

    Took the paperwork to the lawyer this morning for our bankruptcy and will have to move somewhere new by spring, probably out of state because SoCal is just too expensive to live on our reduced income.  Damn bank won't give an inch.  Gotta get packed with help from the one armed man!   Will have to find a place to live (rent), new docs and treatment close to wherever we go, so many things to worry about.  Just trying to think of it as a fresh start. yeah…..

    What a freaking crazy time we are having!!

    Jan, wife to Dirk

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  • Replies
      Rocco
      Participant
      Clinical Trial ParticipantNED

      Hi Jan and Dirk,

      If you were already  having a good respnse from ipi, then adding steroids may not necessarily dimish ipi.  I had received 4 ipi infusions under compassionate use trial and was getting great results.  On my first maintenance dose of ipi I had a severe auto-immune response thought to be triggered by ipi.  I was put on high dose solumedrol (IV steroids) followed by a VERY high dose course of prednisone.  I was on prednisone for over a year as I weaned off from such a high dose.  My Onc and I were quite worried whether or not this would reverse the good that ipi had already done.  It did not.  See my PatNet for all the details.  Of course everyone's immune system is different – so your results may vary.

      Rocco – Stage IV

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      Rocco
      Participant
      Clinical Trial ParticipantNED

      Hi Jan and Dirk,

      If you were already  having a good respnse from ipi, then adding steroids may not necessarily dimish ipi.  I had received 4 ipi infusions under compassionate use trial and was getting great results.  On my first maintenance dose of ipi I had a severe auto-immune response thought to be triggered by ipi.  I was put on high dose solumedrol (IV steroids) followed by a VERY high dose course of prednisone.  I was on prednisone for over a year as I weaned off from such a high dose.  My Onc and I were quite worried whether or not this would reverse the good that ipi had already done.  It did not.  See my PatNet for all the details.  Of course everyone's immune system is different – so your results may vary.

      Rocco – Stage IV

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      Rocco
      Participant
      Clinical Trial ParticipantNED

      Hi Jan and Dirk,

      If you were already  having a good respnse from ipi, then adding steroids may not necessarily dimish ipi.  I had received 4 ipi infusions under compassionate use trial and was getting great results.  On my first maintenance dose of ipi I had a severe auto-immune response thought to be triggered by ipi.  I was put on high dose solumedrol (IV steroids) followed by a VERY high dose course of prednisone.  I was on prednisone for over a year as I weaned off from such a high dose.  My Onc and I were quite worried whether or not this would reverse the good that ipi had already done.  It did not.  See my PatNet for all the details.  Of course everyone's immune system is different – so your results may vary.

      Rocco – Stage IV

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      Rocco
      Participant
      Clinical Trial ParticipantNED

      Hi Jan and Dirk,

      If you were already  having a good respnse from ipi, then adding steroids may not necessarily dimish ipi.  I had received 4 ipi infusions under compassionate use trial and was getting great results.  On my first maintenance dose of ipi I had a severe auto-immune response thought to be triggered by ipi.  I was put on high dose solumedrol (IV steroids) followed by a VERY high dose course of prednisone.  I was on prednisone for over a year as I weaned off from such a high dose.  My Onc and I were quite worried whether or not this would reverse the good that ipi had already done.  It did not.  See my PatNet for all the details.  Of course everyone's immune system is different – so your results may vary.

      Rocco – Stage IV

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        Jan in OC
        Participant

        Thanks for your kind words,  Don't know if he is responding as we have only had one IPI infusion. then all of this other stuff with the broken arm & blisters came up…we try to stay hopeful.

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        Jan in OC
        Participant

        Thanks for your kind words,  Don't know if he is responding as we have only had one IPI infusion. then all of this other stuff with the broken arm & blisters came up…we try to stay hopeful.

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      KatyWI
      Participant

      Oh honey, when it rains it pours!  I am feeling for you!  You say "laughter is the best medicine" so try to keep laughing – because this is has now reached the "way too crazy" stage!  Good luck packing with the "one armed man."  (That WAS funny!)

      I did read about ipi that when they needed to give steroids to manage side effects, it was documented in one study that there was NOT a loss of benefit of the ipi.  I am sorry I can't remember all the details, but please don't sweat the need for the steroids.  It might not be all that bad.

      Sometimes you just need to vent…and sometimes you just need to know somebody hears you.  I hear ya!

      KatyWI

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      KatyWI
      Participant

      Oh honey, when it rains it pours!  I am feeling for you!  You say "laughter is the best medicine" so try to keep laughing – because this is has now reached the "way too crazy" stage!  Good luck packing with the "one armed man."  (That WAS funny!)

      I did read about ipi that when they needed to give steroids to manage side effects, it was documented in one study that there was NOT a loss of benefit of the ipi.  I am sorry I can't remember all the details, but please don't sweat the need for the steroids.  It might not be all that bad.

      Sometimes you just need to vent…and sometimes you just need to know somebody hears you.  I hear ya!

      KatyWI

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        Jan in OC
        Participant

        Thanks Katy,  I don't really have anyone to talk to except this board, so I am glad that you all put up with my "babbling" and venting.  This helps keep me sane when I am freaked out!! (which is a lot these days).

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        Jan in OC
        Participant

        Thanks Katy,  I don't really have anyone to talk to except this board, so I am glad that you all put up with my "babbling" and venting.  This helps keep me sane when I am freaked out!! (which is a lot these days).

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      killmel
      Participant

      Jan, you are amazing. I do not how you keep going.God Bless you. I hope that you get through this tuff time & you get good news in the near future. Take care of yourself..Mary

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      killmel
      Participant

      Jan, you are amazing. I do not how you keep going.God Bless you. I hope that you get through this tuff time & you get good news in the near future. Take care of yourself..Mary

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        killmel
        Participant

        Jan,

         

        You are going through so much. Do you any children that can help you both.

        Please watch careful that your health is not jeopardized.

        I will pray for you both.

        Keep the faith!

        Jan

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        killmel
        Participant

        Jan,

         

        You are going through so much. Do you any children that can help you both.

        Please watch careful that your health is not jeopardized.

        I will pray for you both.

        Keep the faith!

        Jan

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        Jan in OC
        Participant

        Thanks…your response made me smile.  I have a 21 year old daughter….but she has been disabled  since she was 14 and I take care of her too.  My life is very busy.  I used to work from my home (daycare), but had to close in December, no clients; takeing too many days off for doctor visits, etc..  Now, taking care of the two of them is my full time job.

        Jan, wife to Dirk

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        Jan in OC
        Participant

        Thanks…your response made me smile.  I have a 21 year old daughter….but she has been disabled  since she was 14 and I take care of her too.  My life is very busy.  I used to work from my home (daycare), but had to close in December, no clients; takeing too many days off for doctor visits, etc..  Now, taking care of the two of them is my full time job.

        Jan, wife to Dirk

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