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taf/mek advice
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taf/mek advice

› Forums › General Melanoma Community › taf/mek advice

  • Post
    • September 6, 2018 at 2:55 pm
    mmmm
    Participant

      hello everyone! 

      ive just started the taflinar/mekinist combo as stage 3b for a year in Canada and was hoping to get some advice from your collective experiences. I just started a week ago, so no side effects yet but have been warned by my doc and pharmacist, and have read through most of the posts on here regarding fevers, rashes, etc. 

      one of the main things im wondering about is how this will affect my work abilities. I've already had to take a lot of days off for appointments/ surgeries, so Im just wondering in general how long fevers last, and how long they take you out of it, so to speak. Or if theres no general guideline and its individual.

      additiionally i was hoping to go on a week long vacation (within canada) at the start of october, and am wondering if this is a terrible idea or not, given that from what i've read, side effects usually start around the three week mark. 

      i've also experienced a pretty constant but low level of nausea since i started the doses, and my pharmacist has suggested gravol, but that always puts me to sleep, so i was wondering if anyone has found an effective way to deal with this.

      thanks in advance, hope everyone is doing well! 

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    • Replies
        • September 6, 2018 at 3:06 pm
        NSNewf
        Participant

          Hi mmmm

          I am interested in what you find out as well as your experience. I am also Canadian and have an appointment booked for late this month back with oncologist. 

          I am 3a and diagnosed 18 months ago. My only option was HDI ( which I declined). I am going back to talk whether the options have changed

          Good Luck and take care

            • September 6, 2018 at 3:22 pm
            mmmm
            Participant

              Hi anonymous,

              I got access to these drugs as I am braf mutated and they were just made available to stage 3's through compassionate acess on application. for a treatment period of one year. I dont know if they are yet available for anyone less than 3b, or it could be stage 3 in general, all the appointments/information are all kind of a blur for me at this point lol.

              I hope you have good news at your appointment!

              • September 6, 2018 at 3:57 pm
              NSNewf
              Participant

                Thanks mmmm

                Since oncology does not follow me I am monitored by derm and ENT. However I have become my primary care advocate. 

                I do my research and push to get what I can. I am in NS. 

                Stay healthy

                 

              • September 6, 2018 at 4:27 pm
              Linda5
              Participant

                Hi…I’ve been on Taf/Mek twice, stage 4. The first time I had chills and fevers, usually in the evenings, and while they were tough to get through I managed to stay at work. I didn’t have nausea, hardly any rash, and some minor visual sensitivity. Worked full time in a demanding job through for the four months until I moved to immunotherapy.

                After keytruda resulted in a limited response and then progression, I went back to Taf Mek and expected the same side effects….wrong! I had the fevers and chills but much worse, cycling every three hours, had to take a break, only had them periodically after, nausea, welts (erythema nodosum), fatigue, sore skin/flulike symptoms. Not usually all at once but on any given day there is usually something going on. My oncologist told me that they find folks that have been on immunotherapy seem to have elevated side effects. I have not been able to work during his period…primarily because i can’t be reliably or consistently there, although I do go in for a couple of hours a couple of times a week when I can.

                For nausea they’ve given me Olanzapine, which knocks me out more than Gravol does. I did travel out of country for a few days to attend a graduation, but took a vial of prednisone with me and was under strict orders to come home early if I had any issues. Good luck, hopefully you’ll be ok and able to carry on fairly normally!

                  • September 6, 2018 at 10:12 pm
                  Mksews
                  Participant

                    Interesting what you said about the immunotherapy. MY husband had been on opdivo for about 6 months and had it return to the original site, being BRAF positive they swithched him to TAK-MEK. First couple of weeks were awful, fevers, chills, nausea, then he got really dehydrated. So they took him off of it for about 2 weeks, they started back at half dose, this time his hands swelled up, and had fevers, and chills. Doctor reduced it again to every other day.  There has to be something said for quality of life. We will see how his scans look in about a month. Hopefully all stays well on this dose. Take care. mk

                     

                  • September 6, 2018 at 5:37 pm
                  Sissi
                  Participant

                    Hello,

                    I believe everybody reacts differently to the meds, but here is my experience so far.

                    I've been on Taf/Mek for almost two months. The first month I was my normal self, but around week 6 I started to have chills twice a day and a fever that wasn't going down, even with Tylenols every 6 hours.

                    After spending a whole day in bed with fever, I stopped the meds for two days as my oncologist had told me to, went back on the meds and since then I've been ok, apart from a little bit of tiredness. My oncologist told me it was the right thing to do, as he prefers that I stop the meds for a few days instead of having to reduce the dose.

                    I was off work when the side effects happenned but I'm going back Monday and will deal with what comes to me in terms of side effects, but it is reassuring to know that I can stop the meds if needed. But apart from those two days of fever and some flu like muscle pain once in a while, I'm fine.

                    I hope that helps a little bit. I am stage 3C. I live in Canada also, Montreal to be more precise. Where about are you?

                      • September 7, 2018 at 3:49 pm
                      mmmm
                      Participant

                        Hi Sissi,

                        I'm in toronto! not looking forward to that first set of fevers, but hope you continue to feel ok 

                      • September 6, 2018 at 10:00 pm
                      ed williams
                      Participant

                        Hi MMMMMMM, here is a pretty good link to Onclive video made just after ASCO in June of 2018, so up to date information from some of the leading Oncologist in the U.S.A. Good luck with treatments!!!Ed https://www.youtube.com/watch?v=mh2cJQ_FmG0

                        • September 9, 2018 at 12:01 am
                        Mat
                        Participant

                          mmmm, everyone responds differently.  For me, taking taf-mek was like taking vitamins.  Side effects were few.  I worked full time.  Don't assume that you'll have issues.

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