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imnxcguy

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      imnxcguy
      Participant

        I'll chime in with my experience. I've been on the Tafinlar/Mekinist combo since early 2015. Initially at 300mg/2mg. After a few months, that was reduced to 225/1.5 to try to lessen the side effects. 

        I've now settled into a very regular regimen of basically 10 days feeling good, then 4-5 days with fever symptoms. They start around 99.5-100.5, and often spike to 102-103, and occasionally (if I'm not careful with Advil/Tylenol combo) go up to 103.5-104. Once the fever gets to about 102, I cycle off the meds for 2-3 days to get it back to normal, then resume.

        Last set of scans (Stage IV Metastatic melanoma in lungs) were still good — no new growth or metabolic activity, existing main tumors are barely decreasing in size from the initial reduction back in April.

        I'd like to figure out a way to 1) not get fevers every two weeks and half a third of my life spent dealing with them, and 2) not have to cycle off the meds, but as long as they're working….

        Mark

        imnxcguy
        Participant

          I'll chime in with my experience. I've been on the Tafinlar/Mekinist combo since early 2015. Initially at 300mg/2mg. After a few months, that was reduced to 225/1.5 to try to lessen the side effects. 

          I've now settled into a very regular regimen of basically 10 days feeling good, then 4-5 days with fever symptoms. They start around 99.5-100.5, and often spike to 102-103, and occasionally (if I'm not careful with Advil/Tylenol combo) go up to 103.5-104. Once the fever gets to about 102, I cycle off the meds for 2-3 days to get it back to normal, then resume.

          Last set of scans (Stage IV Metastatic melanoma in lungs) were still good — no new growth or metabolic activity, existing main tumors are barely decreasing in size from the initial reduction back in April.

          I'd like to figure out a way to 1) not get fevers every two weeks and half a third of my life spent dealing with them, and 2) not have to cycle off the meds, but as long as they're working….

          Mark

          imnxcguy
          Participant

            I'll chime in with my experience. I've been on the Tafinlar/Mekinist combo since early 2015. Initially at 300mg/2mg. After a few months, that was reduced to 225/1.5 to try to lessen the side effects. 

            I've now settled into a very regular regimen of basically 10 days feeling good, then 4-5 days with fever symptoms. They start around 99.5-100.5, and often spike to 102-103, and occasionally (if I'm not careful with Advil/Tylenol combo) go up to 103.5-104. Once the fever gets to about 102, I cycle off the meds for 2-3 days to get it back to normal, then resume.

            Last set of scans (Stage IV Metastatic melanoma in lungs) were still good — no new growth or metabolic activity, existing main tumors are barely decreasing in size from the initial reduction back in April.

            I'd like to figure out a way to 1) not get fevers every two weeks and half a third of my life spent dealing with them, and 2) not have to cycle off the meds, but as long as they're working….

            Mark

            imnxcguy
            Participant

              Congrats on your improvement. I'm also on the Tafinlar + Mekinist program. Started at 300mg originally in January 2015 for Tafinlar, 2 mg daily. Reduced down to 225/1.5 daily after a few months because of high fevers, etc. Now, I'm on a regular schedule of fevers every two weeks (10 days good, 4-5 days bad), where I have to cycle off the medication for 2-3 days, essentially twice a month.

              I'm curious as to whether going to an every other day regimen would be advantageous to me, and keep me from losing out on life for almost a third of every month. Is the every other day medicine still working for you?

              Mark

              imnxcguy
              Participant

                Congrats on your improvement. I'm also on the Tafinlar + Mekinist program. Started at 300mg originally in January 2015 for Tafinlar, 2 mg daily. Reduced down to 225/1.5 daily after a few months because of high fevers, etc. Now, I'm on a regular schedule of fevers every two weeks (10 days good, 4-5 days bad), where I have to cycle off the medication for 2-3 days, essentially twice a month.

                I'm curious as to whether going to an every other day regimen would be advantageous to me, and keep me from losing out on life for almost a third of every month. Is the every other day medicine still working for you?

                Mark

                imnxcguy
                Participant

                  Congrats on your improvement. I'm also on the Tafinlar + Mekinist program. Started at 300mg originally in January 2015 for Tafinlar, 2 mg daily. Reduced down to 225/1.5 daily after a few months because of high fevers, etc. Now, I'm on a regular schedule of fevers every two weeks (10 days good, 4-5 days bad), where I have to cycle off the medication for 2-3 days, essentially twice a month.

                  I'm curious as to whether going to an every other day regimen would be advantageous to me, and keep me from losing out on life for almost a third of every month. Is the every other day medicine still working for you?

                  Mark

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