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Forums General Melanoma Community Tafinlar/Mekinist

  • Post
    donna conn
      I started on tafinlar/mekinist and initially did well except for some nausea and vomiting, then about 2 weeks into it started in with the chills and fever. I stopped the drug for a few days, but had a return of chills and fever so I had to stop it again. When I took the next dose 2 hours after ingesting it I had the most severe headache which was unbearable sending me to the ER for pain relief. I took another break from the meds and when I started them up again the same thing happened with a headache sending me back to the ER. After another break , I resumed the medication at a half dose with my sister, who is a nurse helping me deal with the side effects. She had me take two extra strength excedrine one hour before the 75 mg tafinlar and when I took the half dose, I didn’t get a headache, but started having extreme pains in my neck, shoulders, arms, and legs. I took Tylenol 500mg, ibuprofens 800mg, and finally 5 mg of oxycodone without any relief. I ended up in the ER again where they gave me 1mg dilaudid but that didn’t take the pain away, it just made it a little more bearable, so they finally gave me 1 mg of dilaudid and 1 mg of Ativan the next thing I remember was waking up the next day at noon. Has anyone had any similar experiences? If so how can I deal with taking this medicine and not having to go to the ER after taking it?
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          Sorry to hear about all the side effects you are experiencing. I was on this drug too and had really bad headaches…probably better described as a migraine. Also fever, chills, joint pain and high liver enzymes. Each time I had to go off drug for my liver to get back to normal which sometimes took 3 weeks. After 5 months of constant breaks and my dose being lowered over and over again I was taken off and put on Opdivo instead and had almost no side effects. For me I ended up being off the drug more than I was on the drug. I guess I would ask your oncologist about lowering your dose and see how that goes. I know it’s tough, hang in there. I was stage 3 and currently NED since the summer. Sending positives vibes your way.
          ed williams
            Hi Donna, I haven’t been on targeted therapy but have followed the drugs and would like to share with you two video”s from Onclive with the first one talking specifically about the combination that you are on from a really great panel of experts in melanoma and how they manage side effects (IRAE’s) and the second video from two years later where based on the Columbus trial a third combination of Encorafenib and binimetinib is now approved and being used in melanoma treatment. If I understand your profile and above comment correctly you are stage 3 at present, did they give it a letter 3a or 3b or 3c or 3d? One other question is why did they take you off nivo (opdivo), was it because you progressed on it ? Here are the links and good luck with the side effects. Best Wishes!!! Ed
              I have no experience with targeted therapy however I have plenty with migranes. When I have migranes I usually have nausea and the works so I am unable to take pills. I use Gravol suppositories (in Canada) which I assume would be Dramamine in the US. It works amazingly well but the only bad side effect is that it makes me drowsy and I sleep. When I am able to take pills, I take Relpax or Cambia (powder). In the US, my insurance will not cover Relpax but it does cover Sumatriptan. You do not need a prescription for Gravol/Dramamine but you do need one for Relpax, Sumatriptan and Cambia.
              Please definitely check with your oncologist since I am not on targeted therapy and am only on Opdivo.
              Best of luck and I hope you find relief soon.
              Juan Arias
                Hello Donna,
                Check my post, hope it can be useful,
                In my opinión the key factor is hydratation, and of course re-hydratation after diahrea.
                Gatorades or Water + salt + lemon juice drops helps a lot.
                Be stronger than ever. Greetings.
                donna conn
                  I had melanoma removed from my toe as well as a lymph node from my thigh in 2013 and was told that the surgery had removed it all. When I was diagnosed with melanoma again in July of 2019 it had spread to my retro peritoneal area and my groin. By the time of surgery, two week after my PET scan the surgeon said it was much more extensive than what the PET scan showed, he took multiple node from my groin and retroperitoneal area, as well as two veins in my thigh. The second surgeon once again said he had gotten all of the cancer. The surgery was so difficult as well as getting follow up that opdivo was late getting started. My first repeat PET scan in December showed a positive node in my retroperitoneal area again and because of the BRAF mutation, MDANDERSON suggested I go off the opdivo and get the tafinlar/mekinist therapy. I am single so, I was trying to manage my own care which I was obviously not doing very well considering how poorly I did following that August surgery.
                    I was on the combo for a year and did not have your experience. I had the fever and chills, but they would subside after stopping the pills for a couple days. The fever/chills were somehwat cyclical in my expereince as I would get them every 6-8 weeks.. I would discuss the smaller treatment and/or trying the Braftove/mektovi combo with your oncologist.
                      I had the fever/chills issues pretty bad so my doc lowered my dose to .5 MEK and 100 Taf 2X per day and that really helped. I’ve been on the therapy for 2+ years now and after reading your experience I consider myself very lucky! Best of luck, and let us know how you progress.
                      donna conn
                        Haven’t posted for awhile, seems it’s never ending. I finally got relief from the symptoms I had taking tafinlar/mekinist when my Dr prescribed a daily dose of 10 mg of prednisone. So I could finally take the medication that is supposed to help cure me. I went back to MDANDERSON and now the PET scan is showing a reduction in the pelvic node, but has also picked up a suspicious spot on my spleen which was not picked up in December. I’m getting a CT in the morning and then possibly a biopsy, the Dr had wanted to go directly to the biopsy, but I hate to do that if it doesn’t look like cancer. Any thoughts or ideas? Its just strange that one area has shrunk while another that did not show up in December is now showing metabolic activity.
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