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9 year old & ipi

Forums General Melanoma Community 9 year old & ipi

  • Post
    Dawn
    Participant

    My nine year old daughter had been doing very well.  She had completed 3 infusions of ipi and things were going great.  However, two weeks ago she suffered a small bleed.  They have done multiple MRI's and cannot see well behind the bleed to see if there is a tumor there for sure or not.  The scans were read and then sent to Sloan Kettering as well.  From my discussions, they believe that they are seeing inflammation on the top of her head area where the cancer is and believe that this looking good.  They also mentioned that the bleed area may have shown sl

    My nine year old daughter had been doing very well.  She had completed 3 infusions of ipi and things were going great.  However, two weeks ago she suffered a small bleed.  They have done multiple MRI's and cannot see well behind the bleed to see if there is a tumor there for sure or not.  The scans were read and then sent to Sloan Kettering as well.  From my discussions, they believe that they are seeing inflammation on the top of her head area where the cancer is and believe that this looking good.  They also mentioned that the bleed area may have shown slight progression but it has significantly cleared….does that make sense?  She did experience some seizures with the bleed but those are under control and she will be finishing her steroids on Monday.  They are planning on giving her the fourth infusion on Friday of this week.  She is doing well overall.  Her right side is a little weaker but she is regaining strength and mobility.  Also two weeks in the hospital doesn't help that either.  Wondering if anyone else had experienced a bleed while being on ipi?  Or any other thoughts would be helpful.  DawnMarie 

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      ValinMtl
      Participant

      Dear DawnMarie, I have completed my first round of compassionate ipi and waiting hopefully to start my next round in March. I have not had any bleeds actually very little side effects but some growth.   There are many out there that are currently on ipi and perhaps somebody might have an answer for you.  I want to send my prayers to your family and daughter during this very difficult time. ith warm regards, Val

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      ValinMtl
      Participant

      Dear DawnMarie, I have completed my first round of compassionate ipi and waiting hopefully to start my next round in March. I have not had any bleeds actually very little side effects but some growth.   There are many out there that are currently on ipi and perhaps somebody might have an answer for you.  I want to send my prayers to your family and daughter during this very difficult time. ith warm regards, Val

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      James from Sydney
      Participant

      Hi Dawn

      our son had received Ippi twice and then started to have internal bleeding in his abdomen, they say it was not Ippi related but i am sure they really don't have all the answers. Prior to going on Ippi he had a Met in his Brain which bled and the Melanoma Specialist advised that Mets in the Brain have a tendency to bleed out.

      I wish Becca the best and look forward to reading that one day soon she will be NED.

      best wishes

      James

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      James from Sydney
      Participant

      Hi Dawn

      our son had received Ippi twice and then started to have internal bleeding in his abdomen, they say it was not Ippi related but i am sure they really don't have all the answers. Prior to going on Ippi he had a Met in his Brain which bled and the Melanoma Specialist advised that Mets in the Brain have a tendency to bleed out.

      I wish Becca the best and look forward to reading that one day soon she will be NED.

      best wishes

      James

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        Vermont_Donna
        Participant

        Hi Dawn,

        Wishing you the BEST for your daughter! I just finished my first round of Ipi and so far no bleeds and very few side effects. I hope the doctors can figure things out fast. Is she in school or home schooled? I cant imagine how she must feel, this is hard enough being an adult! I know that kids get chemo on the same ward I get my Ipi and the nurses said that they come first, meaning, that sometimes the adults have to wait for their chemos from the pharmacies as the pharmacy serves the children first. 

        Cyber hugs,

        Vermont_Donna, stage 3a, just finished my 4th infusion of Ipi

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        Vermont_Donna
        Participant

        Hi Dawn,

        Wishing you the BEST for your daughter! I just finished my first round of Ipi and so far no bleeds and very few side effects. I hope the doctors can figure things out fast. Is she in school or home schooled? I cant imagine how she must feel, this is hard enough being an adult! I know that kids get chemo on the same ward I get my Ipi and the nurses said that they come first, meaning, that sometimes the adults have to wait for their chemos from the pharmacies as the pharmacy serves the children first. 

        Cyber hugs,

        Vermont_Donna, stage 3a, just finished my 4th infusion of Ipi

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