Ipi/Nivo Fever

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  • Post
    • January 5, 2017 at 8:13 pm
    jennunicorn
    Participant

      Just wanted to update for others who might come accross the same issue:

      Last night my fever was back with 102.7. I maxed out on the amount of Tylenol I could take so I just had to do everything I could to cool down. My body has not been sweating with fevers.. which seems abnormal.. just a dry hotness with chills and aches.

      My onc is out of town but I was able to talk with another mel onc there and they want to hold off on doing steroids just yet. I don't have any other symptoms and blood work was normal couple days ago, so they don't like to jump on the steroid wagon if it's not neccessary.

      So, he told me to use Aleve instead of Tylenol as it lasts longer and might work better. He is sending a prescription for Prednisone to my pharmacy for 10mg tablets and said if I can't control the fevers with Aleve at all and it gets really high, then I will have the steroid on me and I can start at 10mg once a day and go to 20mg if the smaller dose doesn't work.

      He said patients who have gotten fevers like this with no other symptoms usually get over it in a few weeks. Which sounds like torture if it lasts that long… since it always happens at night and very early morning, so I have not been able to sleep very well at all, I am exhausted.

      Thank you to everyone who posted on my last thread, it helped a lot knowing this is not that unusal and it's not neccessarily from a more serious side effect.

      Let's hope this means good things going on inside! 

       

    Viewing 23 reply threads
    • Replies
        • January 5, 2017 at 8:24 pm
        jenny22
        Participant

          Jenn-

          I hope the Aleve does the trick and maybe you wont need the prednisone….also hoping you can soon get a good nights sleep.

          AND MOST IMPORTANTLY, that your comment about "hoping this means good things are going on inside" is 100% the case!!!!

           

          Feel better soon.

          jenny

          • January 5, 2017 at 8:24 pm
          jenny22
          Participant

            Jenn-

            I hope the Aleve does the trick and maybe you wont need the prednisone….also hoping you can soon get a good nights sleep.

            AND MOST IMPORTANTLY, that your comment about "hoping this means good things are going on inside" is 100% the case!!!!

             

            Feel better soon.

            jenny

            • January 5, 2017 at 8:24 pm
            jenny22
            Participant

              Jenn-

              I hope the Aleve does the trick and maybe you wont need the prednisone….also hoping you can soon get a good nights sleep.

              AND MOST IMPORTANTLY, that your comment about "hoping this means good things are going on inside" is 100% the case!!!!

               

              Feel better soon.

              jenny

              • January 5, 2017 at 8:56 pm
              debwray
              Participant

                Hi Jenn,

                Hope it all settles down soon…. was wondering how you were getting on. The side effects on ipi nivo are so varied- hoping to come off my drug holiday soon – so maybe dose 3 here we come…

                And yes- side effects do seem to increase chances of responses so I will cross my fingers.

                Deb

                 

                • January 5, 2017 at 8:56 pm
                debwray
                Participant

                  Hi Jenn,

                  Hope it all settles down soon…. was wondering how you were getting on. The side effects on ipi nivo are so varied- hoping to come off my drug holiday soon – so maybe dose 3 here we come…

                  And yes- side effects do seem to increase chances of responses so I will cross my fingers.

                  Deb

                   

                  • January 5, 2017 at 8:56 pm
                  debwray
                  Participant

                    Hi Jenn,

                    Hope it all settles down soon…. was wondering how you were getting on. The side effects on ipi nivo are so varied- hoping to come off my drug holiday soon – so maybe dose 3 here we come…

                    And yes- side effects do seem to increase chances of responses so I will cross my fingers.

                    Deb

                     

                      • January 5, 2017 at 9:23 pm
                      jennunicorn
                      Participant

                        Thanks Deb! Hope you get your 3rd dose soon. 

                        • January 5, 2017 at 9:23 pm
                        jennunicorn
                        Participant

                          Thanks Deb! Hope you get your 3rd dose soon. 

                          • January 5, 2017 at 9:23 pm
                          jennunicorn
                          Participant

                            Thanks Deb! Hope you get your 3rd dose soon. 

                          • January 5, 2017 at 10:31 pm
                          MichelleRHG
                          Participant
                            Sorry you are feeling so bad!
                            • January 5, 2017 at 10:31 pm
                            MichelleRHG
                            Participant
                              Sorry you are feeling so bad!
                              • January 5, 2017 at 10:31 pm
                              MichelleRHG
                              Participant
                                Sorry you are feeling so bad!
                                • January 5, 2017 at 10:44 pm
                                Aloha14
                                Participant

                                  I hope you can get some rest soon and this doesn't for weeks. 

                                  • January 5, 2017 at 10:44 pm
                                  Aloha14
                                  Participant

                                    I hope you can get some rest soon and this doesn't for weeks. 

                                    • January 5, 2017 at 10:44 pm
                                    Aloha14
                                    Participant

                                      I hope you can get some rest soon and this doesn't for weeks. 

                                      • January 5, 2017 at 10:51 pm
                                      Mamapegela
                                      Participant

                                        Hi Jenn- Sorry to hear you are going through this.  I am having side effects too- and am also hoping this means ultimately good things.  Let's keep the faith and try to put up it!  

                                        Thinking of you-

                                        Peggy

                                          • January 5, 2017 at 11:08 pm
                                          jennunicorn
                                          Participant

                                            Thank you Peggy, fingers crossed all this torture is worth it for us!

                                            • January 5, 2017 at 11:08 pm
                                            jennunicorn
                                            Participant

                                              Thank you Peggy, fingers crossed all this torture is worth it for us!

                                              • January 5, 2017 at 11:08 pm
                                              jennunicorn
                                              Participant

                                                Thank you Peggy, fingers crossed all this torture is worth it for us!

                                              • January 5, 2017 at 10:51 pm
                                              Mamapegela
                                              Participant

                                                Hi Jenn- Sorry to hear you are going through this.  I am having side effects too- and am also hoping this means ultimately good things.  Let's keep the faith and try to put up it!  

                                                Thinking of you-

                                                Peggy

                                                • January 5, 2017 at 10:51 pm
                                                Mamapegela
                                                Participant

                                                  Hi Jenn- Sorry to hear you are going through this.  I am having side effects too- and am also hoping this means ultimately good things.  Let's keep the faith and try to put up it!  

                                                  Thinking of you-

                                                  Peggy

                                                  • January 5, 2017 at 11:54 pm
                                                  Mark_DC
                                                  Participant

                                                    Good luck Jenn — you have been pretty fortunate with side effects, i could only take one ipi and you made it through all four. I just hope this will go away faster than your doctor said, that four weeks is an upper bound and will be much less. For me prednisone was great but it meant even less sleep so be careful what you wish for — i became like an energizer bunny!

                                                    hope too that your treatment is working; i seem always to run into side effects, first on ipi now on pembro, but on the positive side the pembro does seem to be working. But now have to sort out my side effects before continuing sad

                                                    • January 5, 2017 at 11:54 pm
                                                    Mark_DC
                                                    Participant

                                                      Good luck Jenn — you have been pretty fortunate with side effects, i could only take one ipi and you made it through all four. I just hope this will go away faster than your doctor said, that four weeks is an upper bound and will be much less. For me prednisone was great but it meant even less sleep so be careful what you wish for — i became like an energizer bunny!

                                                      hope too that your treatment is working; i seem always to run into side effects, first on ipi now on pembro, but on the positive side the pembro does seem to be working. But now have to sort out my side effects before continuing sad

                                                      • January 5, 2017 at 11:54 pm
                                                      Mark_DC
                                                      Participant

                                                        Good luck Jenn — you have been pretty fortunate with side effects, i could only take one ipi and you made it through all four. I just hope this will go away faster than your doctor said, that four weeks is an upper bound and will be much less. For me prednisone was great but it meant even less sleep so be careful what you wish for — i became like an energizer bunny!

                                                        hope too that your treatment is working; i seem always to run into side effects, first on ipi now on pembro, but on the positive side the pembro does seem to be working. But now have to sort out my side effects before continuing sad

                                                        • January 5, 2017 at 11:54 pm
                                                        Mark_DC
                                                        Participant

                                                          Good luck Jenn — you have been pretty fortunate with side effects, i could only take one ipi and you made it through all four. I just hope this will go away faster than your doctor said, that four weeks is an upper bound and will be much less. For me prednisone was great but it meant even less sleep so be careful what you wish for — i became like an energizer bunny!

                                                          hope too that your treatment is working; i seem always to run into side effects, first on ipi now on pembro, but on the positive side the pembro does seem to be working. But now have to sort out my side effects before continuing sad

                                                            • January 5, 2017 at 11:57 pm
                                                            jennunicorn
                                                            Participant

                                                              Thank you Mark, I have been very fortunate. I can't believe I did Ipi at the 10mg dose and got through 6 infusions of that and then another 4 at 3mg with the combo! Feels like it was a matter of time before my body got a little pissed off 🙂

                                                              • January 5, 2017 at 11:57 pm
                                                              jennunicorn
                                                              Participant

                                                                Thank you Mark, I have been very fortunate. I can't believe I did Ipi at the 10mg dose and got through 6 infusions of that and then another 4 at 3mg with the combo! Feels like it was a matter of time before my body got a little pissed off 🙂

                                                                • January 5, 2017 at 11:57 pm
                                                                jennunicorn
                                                                Participant

                                                                  Thank you Mark, I have been very fortunate. I can't believe I did Ipi at the 10mg dose and got through 6 infusions of that and then another 4 at 3mg with the combo! Feels like it was a matter of time before my body got a little pissed off 🙂

                                                                • January 5, 2017 at 11:54 pm
                                                                Mark_DC
                                                                Participant

                                                                  Good luck Jenn — you have been pretty fortunate with side effects, i could only take one ipi and you made it through all four. I just hope this will go away faster than your doctor said, that four weeks is an upper bound and will be much less. For me prednisone was great but it meant even less sleep so be careful what you wish for — i became like an energizer bunny!

                                                                  hope too that your treatment is working; i seem always to run into side effects, first on ipi now on pembro, but on the positive side the pembro does seem to be working. But now have to sort out my side effects before continuing sad

                                                                  • January 5, 2017 at 11:54 pm
                                                                  Mark_DC
                                                                  Participant

                                                                    Good luck Jenn — you have been pretty fortunate with side effects, i could only take one ipi and you made it through all four. I just hope this will go away faster than your doctor said, that four weeks is an upper bound and will be much less. For me prednisone was great but it meant even less sleep so be careful what you wish for — i became like an energizer bunny!

                                                                    hope too that your treatment is working; i seem always to run into side effects, first on ipi now on pembro, but on the positive side the pembro does seem to be working. But now have to sort out my side effects before continuing sad

                                                                    • January 6, 2017 at 2:26 pm
                                                                    Hukill
                                                                    Participant

                                                                      I developed fever after the 3rd combo dose. The chills and sweats were the worse I have ever had. Like you I used tylenol at first but had to watch the dose. My fever would start to return at about 2 hours after medication. I switched to motrin and as long as I took it every 2 hours it kept my fever under control. If I waited to long to take it I would have to go through the whole chills and sweats cycle. Once a day I would wait on the motrin to see if the fever returned. After 6 weeks it started to taper off and some days I had fever and some not. It did finally end. I figured self medicating on motrin was better for me than self medicating on tylenol.

                                                                      • January 6, 2017 at 2:26 pm
                                                                      Hukill
                                                                      Participant

                                                                        I developed fever after the 3rd combo dose. The chills and sweats were the worse I have ever had. Like you I used tylenol at first but had to watch the dose. My fever would start to return at about 2 hours after medication. I switched to motrin and as long as I took it every 2 hours it kept my fever under control. If I waited to long to take it I would have to go through the whole chills and sweats cycle. Once a day I would wait on the motrin to see if the fever returned. After 6 weeks it started to taper off and some days I had fever and some not. It did finally end. I figured self medicating on motrin was better for me than self medicating on tylenol.

                                                                          • January 6, 2017 at 4:12 pm
                                                                          jennunicorn
                                                                          Participant

                                                                            The Aleve worked SO much better than Tylenol! It actually lasted 12 hours like it says it does. 

                                                                            Did you have body aches and soreness the whole time you went through the fever stuff? Even when the fever wasn't there? That's the hardest part for me right now is my body is so sore and achy all the time, with or without a fever, making it hard to do anything or even be comfortable laying in bed. I already have sore joints and those seem to be worse right now too. Hoping it subsides now that I've got the Aleve thing down.. but wondering what your experience with body aches was?

                                                                            • January 6, 2017 at 4:12 pm
                                                                            jennunicorn
                                                                            Participant

                                                                              The Aleve worked SO much better than Tylenol! It actually lasted 12 hours like it says it does. 

                                                                              Did you have body aches and soreness the whole time you went through the fever stuff? Even when the fever wasn't there? That's the hardest part for me right now is my body is so sore and achy all the time, with or without a fever, making it hard to do anything or even be comfortable laying in bed. I already have sore joints and those seem to be worse right now too. Hoping it subsides now that I've got the Aleve thing down.. but wondering what your experience with body aches was?

                                                                              • January 6, 2017 at 4:12 pm
                                                                              jennunicorn
                                                                              Participant

                                                                                The Aleve worked SO much better than Tylenol! It actually lasted 12 hours like it says it does. 

                                                                                Did you have body aches and soreness the whole time you went through the fever stuff? Even when the fever wasn't there? That's the hardest part for me right now is my body is so sore and achy all the time, with or without a fever, making it hard to do anything or even be comfortable laying in bed. I already have sore joints and those seem to be worse right now too. Hoping it subsides now that I've got the Aleve thing down.. but wondering what your experience with body aches was?

                                                                                • January 6, 2017 at 5:15 pm
                                                                                Hukill
                                                                                Participant

                                                                                  About 5 years ago I had been on Aleve for 2 months when I spent 5 days in the hospital from it. I will never take it again. Didn't really have any more aches than I already had before melanoma. For 4 days or so after a treatment I do have more aches than normal. It does hurt worse laying down. I have had a hot tub for about 10 years I use before getting in bed and usually once during the night, works wonders, best money I ever spent.

                                                                                  • January 6, 2017 at 5:15 pm
                                                                                  Hukill
                                                                                  Participant

                                                                                    About 5 years ago I had been on Aleve for 2 months when I spent 5 days in the hospital from it. I will never take it again. Didn't really have any more aches than I already had before melanoma. For 4 days or so after a treatment I do have more aches than normal. It does hurt worse laying down. I have had a hot tub for about 10 years I use before getting in bed and usually once during the night, works wonders, best money I ever spent.

                                                                                    • January 6, 2017 at 5:15 pm
                                                                                    Hukill
                                                                                    Participant

                                                                                      About 5 years ago I had been on Aleve for 2 months when I spent 5 days in the hospital from it. I will never take it again. Didn't really have any more aches than I already had before melanoma. For 4 days or so after a treatment I do have more aches than normal. It does hurt worse laying down. I have had a hot tub for about 10 years I use before getting in bed and usually once during the night, works wonders, best money I ever spent.

                                                                                    • January 6, 2017 at 2:26 pm
                                                                                    Hukill
                                                                                    Participant

                                                                                      I developed fever after the 3rd combo dose. The chills and sweats were the worse I have ever had. Like you I used tylenol at first but had to watch the dose. My fever would start to return at about 2 hours after medication. I switched to motrin and as long as I took it every 2 hours it kept my fever under control. If I waited to long to take it I would have to go through the whole chills and sweats cycle. Once a day I would wait on the motrin to see if the fever returned. After 6 weeks it started to taper off and some days I had fever and some not. It did finally end. I figured self medicating on motrin was better for me than self medicating on tylenol.

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