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Unrelenting fevers with Dabrafenib/Trametinib…ideas?
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Unrelenting fevers with Dabrafenib/Trametinib…ideas?

› Forums › General Melanoma Community › Unrelenting fevers with Dabrafenib/Trametinib…ideas?

  • Post
    • January 7, 2019 at 1:28 am
    skfitz
    Participant

      Hey all. My husband was diagnosed Stage IV in March 2018 and after failing immunotherapy and everything growing and spreading, was put on Dabrafenib/Trametinib in July. The pills worked great and started shrinking things immediately, but he still can't tolerate them with any consistency. They've reduced him from the 150mg Dab down to 75mg, all the while keeping the Tram at the steady 2mg. He'll do ok for a couple weeks but the minute he tries to taper the Prednisone, the bottom drops out. His fevers (and chills, nausea, joint pain…the works) are in the 104 range and are debilitating. They want to reduce him down to 50mg Dabrafenib but we're thinking maybe it's time to reduce the Trametinib instead. They want him to get down to 10mg on the steroids but that seems impossible right now. Anyone have any success combatting the fevers (or tapering the steroids)? We've tried the Tylenol/Motrin thing and it's been pretty useless. We're hoping to gain as much mileage as we can from these pills since immunotherapy didn't work, but we need to get him to tolerate them. Thanks for any suggestions or support you can provide. I appreciate this support group so very much.

      -Shannon (and Jason)

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    • Replies
        • January 7, 2019 at 2:29 pm
        ed williams
        Participant

          Hi Shannon, best explanation that I have come across is from a Peer exchange Onclive panel, where Dr. Long from Australia gets into your question around the 5:30 min mark. The whole video is pretty good!!! https://www.youtube.com/watch?time_continue=38&v=4nBOF6xHzc4

            • January 8, 2019 at 12:26 am
            skfitz
            Participant

              Thank you so much for this, Ed! I watched the whole video and found it very interesting. It differs from what our oncologists are saying/doing, as they continue to focus on dose reduction. I'm wondering now if intermittent dosing isn't the better bet here. I've been reading a lot about that recently and it seems like it could be where this treatment is headed in the future. I'll definitely be bringing this up to the docs this week. Thanks again! 

            • January 7, 2019 at 5:08 pm
            swalters1038
            Participant

              My oncolocgist has now told me they think the fevers and such are more related to an allergic reaction to the Tafinlar.  New protocal is to immediately stop taking the tafinlar and continuing to take the mekinist.  Once the fevers subside and go back on the tafinalr.  He had a new document from novartis detailing the approaches to various degrees of fever.

                • January 7, 2019 at 6:43 pm
                ed williams
                Participant

                  Hi Steven, do you have a link for newprotocal from Novartis?

                  • January 7, 2019 at 7:39 pm
                  swalters1038
                  Participant

                    I have a paper version at home.  I had an oncology appointment in mid-December and my oncologist sadi he had just received the info the day before.  I'll see if i can get a picture of it and upload it tonight.

                    • January 8, 2019 at 12:31 am
                    skfitz
                    Participant

                      Hi Steven – thanks for the response. That's very interesting about the allergy thing. My husband is part of a clinical trial and they follow the same protocol. He has always been told to keep taking the Mekinist through the fevers, though we've been withholding everything on our own all week since he's been so sick. We see two doctors at two different hospitals (one for a second opnion every 3 months to ensure we're on the right track) and they have different strategies when it comes to the fevers and dosing. It's so confusing to know what't the right thing to do, especially when I see my husband in bed for weeks at a time. Thanks again!

                      -Shannon

                    • January 7, 2019 at 10:17 pm
                    Hukill
                    Participant

                      I was given the ipi/nivo combo. After my third dose I went through the horrible chills and sweats for 6 weeks. In the second week I figured out that if I took motrin, 600 mg every 2 hours on the dot it kept the fever away. If I waited 2 hours and 15 minutes I would have to go through the chills sweat cycle again. After 6 weeks I would go past 2 hours to see if the fever came back and over a week or so the fever finally went away.

                        • January 8, 2019 at 12:34 am
                        skfitz
                        Participant

                          Wow – that's very interesting. We've tried alternating 400 motrin and 500 tylenol every 3-4 hours but never just the motrin (at that dosage and timing). Maybe we'll give it a shot. Thanks again! 

                          -Shannon

                          • January 8, 2019 at 9:04 pm
                          Hukill
                          Participant

                            I really mean if I went past 2 hours the fever came back. Taking motrin at 3-4 hours did not work. I know it becomes self medicating but it worked. 

                          • January 9, 2019 at 5:29 am
                          MelMel
                          Participant

                            I have experienced those following my second combo infusion.  I used cold water and vinegar compresses until the fever would subside. It's effective although a pain and you definitely need a helping hand. My fever started with severe chills around 5 p.m., full blast fever at 5:45 p.m. and it finally returned to normal by 10:30 p.m. This lasted for three evenings in a row. Four days later, I had to stop my third infusion due to elevated liver enzymes. I avoided using Tylenol on advice of my melanoma oncologist due to the fact that I have three liver tumors and high possibility of inflammation. Five days later, I ended up in the hospital since prednisone did not work and now I am also on cellcept.  

                            Melanie

                              • January 10, 2019 at 10:17 am
                              skfitz
                              Participant

                                Hey Melanie. I'm so sorry you went through the same awful fever cycle as my husband. It's so frustrating and unpredictable, and makes it nearly impossible to get back to a "normal" life. I'll try the vinegar compresses next time around. For now we're just withholding both the Dabrafenib and Trametinib for a week or so to give his body a break. The doctors say to keep takin the Trametinib but we're trying a total wash out and reset. We might start back with intermittent dosing since that's been successful for many people. He's also going to start a serious anti-inflammation diet along with supplements: turmeric, co-q10, vit d3, vit c and calcium. Fingers crossed! All the best to you in your continued treatment!

                                Shannon

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