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Stage Iv – Immunotherapy – adverse reaction – sos
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Stage Iv – Immunotherapy – adverse reaction – sos

› Forums › General Melanoma Community › Stage Iv – Immunotherapy – adverse reaction – sos

  • Post
    • September 18, 2019 at 1:54 am
    nasullivan
    Participant
      Hello All,

      So grandma received her second treatment yesterday. They ran the nivo infusion over 30 minutes? I found the original guidelines online and it indicated it should be run over 60? Then the ipi.

      So the total infusion time was 60 minutes? Seemed too fast to me…..

      She had an adverse reaction during the infusion (muscle pain, chest pain) – they gave her benadryl and famotidine and checked her vitals every few minutes. She had the shakes and 8/10 pain. It was brutal to see.

      Thankfully, we were able to get through the infusion with just the anti-histamines and she did not need the predisone. They let her sit for 30 minutes in between – made a big difference.

      Also, we got her genetic sequencing back. She is BRAF negative.

      Some positivity please! Ugh! This is so hard.

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    • Replies
        • September 18, 2019 at 2:32 am
        Cindy Lou
        Participant
          i received only Opdivo from Nov 2018 until May 2019. About March, the nurse started asking me if I would be willing to take it in 30 minutes. I said, whyyy? She said the drug rep had told them that the new guidelines say to give it in 30 minutes. I never agreed to it and continued to receive it over an hour. I had adverse side effects such as severe rash and colitis which put me in the hospital twice so Opdivo was discontinued. I also had very irritating restless legs during the infusions but we found that was caused by the benadryl i was given before the infusions. You could ask that they slow her infusions down to an hour. Never hurts to ask. Good luck to you and your grandmother.
          • September 18, 2019 at 2:32 am
          Cindy Lou
          Participant
            i received only Opdivo from Nov 2018 until May 2019. About March, the nurse started asking me if I would be willing to take it in 30 minutes. I said, whyyy? She said the drug rep had told them that the new guidelines say to give it in 30 minutes. I never agreed to it and continued to receive it over an hour. I had adverse side effects such as severe rash and colitis which put me in the hospital twice so Opdivo was discontinued. I also had very irritating restless legs during the infusions but we found that was caused by the benadryl i was given before the infusions. You could ask that they slow her infusions down to an hour. Never hurts to ask. Good luck to you and your grandmother.
            • September 18, 2019 at 4:34 am
            Baby_Girl
            Participant
              I just had my 7th treatment of nivo (Opdivo) and my IV drip has only ever lasted 30 minutes. I’m in the Infusion room for about an hour total but once the Opdivo is hooked up it only takes 30 minutes. If it was given over 60 minutes for her first treatment I would maybe call and ask the doctor or nurse as to why they have changed it for her second treatment.
              • September 19, 2019 at 8:28 pm
              JED
              Participant
                Hi,

                My experience with nivo infusions at Dana Farber is they run them over 30 minutes followed by a 10 minute flush of saline. I had my one and only nivo/ipi infusion in July and they ran the nivo over 30 minutes but the ipi over 60 minutes, again followed by a 10 minute flush. Can’t recall if there was a flush between the nivo and ipi. Hope this is helpful info.

                Jane

                • September 25, 2019 at 6:45 am
                studiodad
                Participant
                  2nd infusion today. First one 28 days ago with Opdivo went well 30 minutes. No side effects except for exhaustion. Today after 7 minutes of planned repeat infusion, I experienced sudden onset of low back pain. No history of pain in that area and it was excruciating. After they stopped Opdivo flow they injected Benadryl and steroids and 10 minutes later pain resolved. They waited about 20 minutes and infused at slower rate (about 50% slower) and the sped up the remaking 25% Opdivo at a rate between the 30 minute and 60 minute periods. No further problems. Plan for next treatment in 28 days is Benadryl first and then 60 minute pace for Opdivo. Hope this works. It is now 6.5 hours after todat’s Infusion and all is well.
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