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Probably taken off ipi plus Nivo trial

Forums General Melanoma Community Probably taken off ipi plus Nivo trial

  • Post
    Eileensulliv
    Participant

      It's been an interesting week. Since a week after my first infusion of Yervoy and Nivolumab at Hopkins, I was getting intermittent high fevers, nausea and vomiting, and a few other minor side effects. My onc said we are going to delay my second treatment until I get rid of the fevers. Then last week they became not so intermittent at all… Ended up in my local ER Thursday night, and sent home after some fluids, anti nausea meds, and Tylenol. Friday morning I wake up with 103.3 fever and vomiting, so it was off to Hopkins I went. I have never stayed in a hospital before, so I was a bit nervous, but their staff and nurses are exceptional, and made me feel right at "home"! 

      I pretty much stumped the doctors as to why they couldn't get my fevers and nausea to go away. They tried the beta blockers again, and stopped after two days. They tried three days of IV antibiotics and no change. Every test and ct came back as normal. So they chalked this one up to a side effect of treatment, and started me on steroids (on day 2 of antibiotics) and just like that, I'm on the mend! The last night of fevers was no fun… 103.5 most of the night, and nurses packing ice packs all around my body every half an hour… Minor bump in the road, and a week's "vacation" in a fantastic hospital. 

      However, my onc says he is extremely hesitant about keeping me on the trial, as he does not want to put my body through this again. He is thinking we will just stick to the Nivolumab, but I will meet with him Monday to discuss my options. I would prefer to stay on the trial, but I do know that Nivolumab alone is a very good option. Now that I'm feeling better than I have in weeks, I'm just ready to get this show on the road again!

    Viewing 11 reply threads
    • Replies
        arthurjedi007
        Participant

          Wow. Sorry you had such a hard time but glad you are feeling better. When I was on the taf mek combo I would get 103 fevers a lot but Tylenol ice cubes and cool wash clothes always brought it down. I can only imagine what it must have been like for you. Too bad you could not continue with that trial. Good luck with nivo.

          Artie

            Eileensulliv
            Participant

              Thank you, Artie! I know the side effects certainly could have been worse. I trust my onc will make the right recommendation for me… All I know is that after a week of my first ever hospital stay, I have learned enough to know that I will never again take for granted sleeping in my own bed!

              Eileensulliv
              Participant

                Thank you, Artie! I know the side effects certainly could have been worse. I trust my onc will make the right recommendation for me… All I know is that after a week of my first ever hospital stay, I have learned enough to know that I will never again take for granted sleeping in my own bed!

                Eileensulliv
                Participant

                  Thank you, Artie! I know the side effects certainly could have been worse. I trust my onc will make the right recommendation for me… All I know is that after a week of my first ever hospital stay, I have learned enough to know that I will never again take for granted sleeping in my own bed!

                arthurjedi007
                Participant

                  Wow. Sorry you had such a hard time but glad you are feeling better. When I was on the taf mek combo I would get 103 fevers a lot but Tylenol ice cubes and cool wash clothes always brought it down. I can only imagine what it must have been like for you. Too bad you could not continue with that trial. Good luck with nivo.

                  Artie

                  arthurjedi007
                  Participant

                    Wow. Sorry you had such a hard time but glad you are feeling better. When I was on the taf mek combo I would get 103 fevers a lot but Tylenol ice cubes and cool wash clothes always brought it down. I can only imagine what it must have been like for you. Too bad you could not continue with that trial. Good luck with nivo.

                    Artie

                    Bubbles
                    Participant

                      So sorry for all that you have been throught, Eileen!!!  Glad you are feeling better!  And…you're right.  If you must stop the current therapy, Nivo alone ain't bad!!!  Hope you continue to feel well.  Celeste

                        Eileensulliv
                        Participant

                          Thank you, Celeste! It's a beautiful day and I'm feeling great!

                          Eileensulliv
                          Participant

                            Thank you, Celeste! It's a beautiful day and I'm feeling great!

                            Eileensulliv
                            Participant

                              Thank you, Celeste! It's a beautiful day and I'm feeling great!

                            Bubbles
                            Participant

                              So sorry for all that you have been throught, Eileen!!!  Glad you are feeling better!  And…you're right.  If you must stop the current therapy, Nivo alone ain't bad!!!  Hope you continue to feel well.  Celeste

                              Bubbles
                              Participant

                                So sorry for all that you have been throught, Eileen!!!  Glad you are feeling better!  And…you're right.  If you must stop the current therapy, Nivo alone ain't bad!!!  Hope you continue to feel well.  Celeste

                                BrianP
                                Participant

                                  Sorry to hear about your tough side effects Eileen!  I'm curious when your next scan is scheduled.  I know there's some people on here who get very hot and bothered under the collar when folks mention that severe side effects could correlate to good results but I'm in the camp that thinks it would make sense that it could mean your immune system is just getting too ramped up which would not be good for the melanoma.  Let's hope that's the case with you.  From a Stage IV with one year of stability on nivolumab I can echo Celeste's comments that it's not a bad option.

                                  Brian

                                    Eileensulliv
                                    Participant

                                      On Monday I will find out when my next scan is. I am also curious to see if there is any change after only one treatment. My onc does say that this reaction was due to just as you said, Brian… A ramped up immune system gone haywire. I'm anxious for Monday to get here already! ๐Ÿ™‚

                                      Eileensulliv
                                      Participant

                                        On Monday I will find out when my next scan is. I am also curious to see if there is any change after only one treatment. My onc does say that this reaction was due to just as you said, Brian… A ramped up immune system gone haywire. I'm anxious for Monday to get here already! ๐Ÿ™‚

                                        Eileensulliv
                                        Participant

                                          On Monday I will find out when my next scan is. I am also curious to see if there is any change after only one treatment. My onc does say that this reaction was due to just as you said, Brian… A ramped up immune system gone haywire. I'm anxious for Monday to get here already! ๐Ÿ™‚

                                        BrianP
                                        Participant

                                          Sorry to hear about your tough side effects Eileen!  I'm curious when your next scan is scheduled.  I know there's some people on here who get very hot and bothered under the collar when folks mention that severe side effects could correlate to good results but I'm in the camp that thinks it would make sense that it could mean your immune system is just getting too ramped up which would not be good for the melanoma.  Let's hope that's the case with you.  From a Stage IV with one year of stability on nivolumab I can echo Celeste's comments that it's not a bad option.

                                          Brian

                                          BrianP
                                          Participant

                                            Sorry to hear about your tough side effects Eileen!  I'm curious when your next scan is scheduled.  I know there's some people on here who get very hot and bothered under the collar when folks mention that severe side effects could correlate to good results but I'm in the camp that thinks it would make sense that it could mean your immune system is just getting too ramped up which would not be good for the melanoma.  Let's hope that's the case with you.  From a Stage IV with one year of stability on nivolumab I can echo Celeste's comments that it's not a bad option.

                                            Brian

                                            _Paul_
                                            Participant

                                              Glad to hear you recovered from those intense side effects Eileen. Hopkins is an amazing hospital (like a city unto itself). I hope nivo kicks your cancer to the curb!

                                                Eileensulliv
                                                Participant

                                                  Thank you, Paul! I really felt well taken care of at Hopkins, and I'd have to agree, it's a city within a city! Thank God I had people pushing me to wherever I needed to go! Lol

                                                  Eileensulliv
                                                  Participant

                                                    Thank you, Paul! I really felt well taken care of at Hopkins, and I'd have to agree, it's a city within a city! Thank God I had people pushing me to wherever I needed to go! Lol

                                                    Eileensulliv
                                                    Participant

                                                      Thank you, Paul! I really felt well taken care of at Hopkins, and I'd have to agree, it's a city within a city! Thank God I had people pushing me to wherever I needed to go! Lol

                                                    _Paul_
                                                    Participant

                                                      Glad to hear you recovered from those intense side effects Eileen. Hopkins is an amazing hospital (like a city unto itself). I hope nivo kicks your cancer to the curb!

                                                      _Paul_
                                                      Participant

                                                        Glad to hear you recovered from those intense side effects Eileen. Hopkins is an amazing hospital (like a city unto itself). I hope nivo kicks your cancer to the curb!

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