Getting weird symptoms – almost 2 weeks after ipi infusion
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Getting weird symptoms – almost 2 weeks after ipi infusion

› Forums › General Melanoma Community › Getting weird symptoms – almost 2 weeks after ipi infusion

  • Post
    • October 24, 2011 at 4:11 pm
    Lisa13
    Participant

    For the past few days, I've had congestion and left ear was a bit congested.  Still have these symptoms, but noticed today my left side of neck muscle and face is a little puffy.  I felt my neck and don't have any lumps or bumps, you can just feel puffiness down the neck and notice the left side seems more swollen then the right.   I have no other symptoms.

    For the past few days, I've had congestion and left ear was a bit congested.  Still have these symptoms, but noticed today my left side of neck muscle and face is a little puffy.  I felt my neck and don't have any lumps or bumps, you can just feel puffiness down the neck and notice the left side seems more swollen then the right.   I have no other symptoms. Do you think this is a gland problem from the yervoy??  I have placed a call to my clinical trial nurse to ask for sure.  I know thyroid swelling can happen in the front, but I've seen pictures of it occuring on the sides of neck as well.

Viewing 5 reply threads
  • Replies
      • October 24, 2011 at 4:34 pm
      Terra
      Participant

      Lisa, I know symptoms can be different for different people, but Derek definitely noticed that he was getting more symptoms after the first set of scans that coincided with the following set of scans 8 weeks later that showed he was finally responding.

      I know your scan is coming up in about 2 weeks – our thougts and prayers are with you.

      • October 24, 2011 at 4:34 pm
      Terra
      Participant

      Lisa, I know symptoms can be different for different people, but Derek definitely noticed that he was getting more symptoms after the first set of scans that coincided with the following set of scans 8 weeks later that showed he was finally responding.

      I know your scan is coming up in about 2 weeks – our thougts and prayers are with you.

        • October 24, 2011 at 4:57 pm
        Lisa13
        Participant

        Hi Terra,

        Thanks for responding.  Ever since I got the 4th dose, symptoms have been very different for me. 2-3 days after the infusion, I had to take Benedryl for the extreme itching I was experiencing which happened again last night. Clinical nurse told me my immune system was definately activating, so this is a good sign.  I also know you can get thyroiditis when your immune system is highly activated, so this could explain the puffiness in my neck.

        I get scans on Hallowe'en and results on Nov 2nd. As you probably know from experience, not knowing is probably worse then knowing at times.  Although very scared of the upcoming 10 days, I know I'm finally going to get some answers.

        Again, I'm so happy for Derek's news. I hope the ipi continues to work for months and perhaps even years as some have experienced.

        Lisa

        • October 24, 2011 at 4:57 pm
        Lisa13
        Participant

        Hi Terra,

        Thanks for responding.  Ever since I got the 4th dose, symptoms have been very different for me. 2-3 days after the infusion, I had to take Benedryl for the extreme itching I was experiencing which happened again last night. Clinical nurse told me my immune system was definately activating, so this is a good sign.  I also know you can get thyroiditis when your immune system is highly activated, so this could explain the puffiness in my neck.

        I get scans on Hallowe'en and results on Nov 2nd. As you probably know from experience, not knowing is probably worse then knowing at times.  Although very scared of the upcoming 10 days, I know I'm finally going to get some answers.

        Again, I'm so happy for Derek's news. I hope the ipi continues to work for months and perhaps even years as some have experienced.

        Lisa

        • October 24, 2011 at 4:57 pm
        Lisa13
        Participant

        Hi Terra,

        Thanks for responding.  Ever since I got the 4th dose, symptoms have been very different for me. 2-3 days after the infusion, I had to take Benedryl for the extreme itching I was experiencing which happened again last night. Clinical nurse told me my immune system was definately activating, so this is a good sign.  I also know you can get thyroiditis when your immune system is highly activated, so this could explain the puffiness in my neck.

        I get scans on Hallowe'en and results on Nov 2nd. As you probably know from experience, not knowing is probably worse then knowing at times.  Although very scared of the upcoming 10 days, I know I'm finally going to get some answers.

        Again, I'm so happy for Derek's news. I hope the ipi continues to work for months and perhaps even years as some have experienced.

        Lisa

      • October 24, 2011 at 4:34 pm
      Terra
      Participant

      Lisa, I know symptoms can be different for different people, but Derek definitely noticed that he was getting more symptoms after the first set of scans that coincided with the following set of scans 8 weeks later that showed he was finally responding.

      I know your scan is coming up in about 2 weeks – our thougts and prayers are with you.

      • October 24, 2011 at 5:29 pm
      j.m.l.
      Participant

      Thats strange. 3 days after my 2nd infusion of ipi, my face swelled on the left side, but I got a major buzzing in the ears after sleep or nap. It starts in the left ear and travels to the right. But the left is more effected.

       

      My onc did not know of a connection w. ipi. I went to an ENT dr, had a hearing test and a brain MRI (just to be sure there's no swelling, etc) All tests were perfect. The puffiness went down on the left, but the buzzing remains. Weird, it starts after sleep and usually goes away or lessens after 1-3 hours. Right now I have been up for 8 hours and its buzzing away.

       

      I see my dr next wk for consul and 3rd ipi. We'll see if you knows more about it. I think there is def a connection bet the ipi and this effect. good luck

      • October 24, 2011 at 5:29 pm
      j.m.l.
      Participant

      Thats strange. 3 days after my 2nd infusion of ipi, my face swelled on the left side, but I got a major buzzing in the ears after sleep or nap. It starts in the left ear and travels to the right. But the left is more effected.

       

      My onc did not know of a connection w. ipi. I went to an ENT dr, had a hearing test and a brain MRI (just to be sure there's no swelling, etc) All tests were perfect. The puffiness went down on the left, but the buzzing remains. Weird, it starts after sleep and usually goes away or lessens after 1-3 hours. Right now I have been up for 8 hours and its buzzing away.

       

      I see my dr next wk for consul and 3rd ipi. We'll see if you knows more about it. I think there is def a connection bet the ipi and this effect. good luck

      • October 24, 2011 at 5:29 pm
      j.m.l.
      Participant

      Thats strange. 3 days after my 2nd infusion of ipi, my face swelled on the left side, but I got a major buzzing in the ears after sleep or nap. It starts in the left ear and travels to the right. But the left is more effected.

       

      My onc did not know of a connection w. ipi. I went to an ENT dr, had a hearing test and a brain MRI (just to be sure there's no swelling, etc) All tests were perfect. The puffiness went down on the left, but the buzzing remains. Weird, it starts after sleep and usually goes away or lessens after 1-3 hours. Right now I have been up for 8 hours and its buzzing away.

       

      I see my dr next wk for consul and 3rd ipi. We'll see if you knows more about it. I think there is def a connection bet the ipi and this effect. good luck

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