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GSK Combo

› Forums › General Melanoma Community › GSK Combo

  • Post
    • September 28, 2013 at 1:35 am
    Aussielyn
    Participant
      Hi from Australia ! This is my first post .
      I am Stage 4 after having mole on ankle removed 29 years ago. 22months ago I had full pelvic inguinal node dissection after a swollen lymph node showed metastatic melanoma. Only one node was affected & no radiation required. I was lucky & had no lymphedema. End of good luck!

      While on hols in June this year I noticed pea size lump in soft tissue anterior left deltoid – biopsy showed malignant metastatic melanoma – PET Scan showed high grade tumour in right deltoid muscle, & mets in left groin, behind right knee, outside abdomen anterior to left para spinal muscles as well as lesion deep in right adductor muscles. I tested Braf positive & am now on compassionate access to GSK combo. This is my 7 th week – plain sailing till week 6 when fevers, headaches, mouth ulcers , severe feet & leg pain & severe dehydration all hit at once. I was taken off drugs (300mg Dabrafenib & 2 mgsTrametenib) for a week. Am now on 200mgs Dabrafenib but same dosage of Trametinib.

      I would love to hear from anyone else who is knows about this treatment – what side effects ? What success? What your journey has been like? Today is the second day since resuming meds & already legs have started to ache ! Just hoping they don’t get as bad as last week.
      Do hope you all are feeling well & positive today.
      Cheers Lyn

    Viewing 2 reply threads
    • Replies
        • September 28, 2013 at 2:57 am
        JoshF
        Participant
          Lyn-

          I don’t know anything on GSK Combo but you came to right place. I’m sure some on this forum will have insight for you.

          Just wanted to say how sorry I am that after close to 30 years you have to deal with this. I was NED for 2.5 years and had good outlook but recently had recurrence that I’m dealing with. I wish you all the best!

          Josh

            • September 28, 2013 at 6:59 am
            Johnfdc7
            Participant

              Hi Lyn

              I was on Dabrafenib (Tafinlar) alone for over 8 months until my oncologist introduced Trametinib (Mekinist) about 7 weeks ago to make the combo. While on Dabrafenib alone I had some manageable side effects such as fatigue, arthralgia etc but I also had a couple of concerning skin lesions. The introduction of Trametinib went OK for the first five 5 weeks when I was hit with fevers and rigours. Fevers were becoming more difficult to control with medication so my oncologist pulled me off both drugs for a little over a week. It turned out that I also had an underlying lung infection so this break gave time to antibiotic/steroid treatments. Back on the combo now for the past week with no issues with fevers or rigours yet. Pyrexia is a much more common side effect with the combo drugs than it is with Dabrafenib alone. The good news is that the vast majority of patients appear to only have one episode – mechanism for this not really understood. The accepted approach for dealing with this side effect appears to be a short treatment break followed by reinduction.

              Dabrafenib has worked very well for me  – clearing some tumors and stabilising others. It was still working OK at the point that Trametinib was introduced, but  my oncologist felt that the combo was a better long term option. I hope it works just was well for you!

              John

               

               

               

               

              • September 28, 2013 at 6:59 am
              Johnfdc7
              Participant

                Hi Lyn

                I was on Dabrafenib (Tafinlar) alone for over 8 months until my oncologist introduced Trametinib (Mekinist) about 7 weeks ago to make the combo. While on Dabrafenib alone I had some manageable side effects such as fatigue, arthralgia etc but I also had a couple of concerning skin lesions. The introduction of Trametinib went OK for the first five 5 weeks when I was hit with fevers and rigours. Fevers were becoming more difficult to control with medication so my oncologist pulled me off both drugs for a little over a week. It turned out that I also had an underlying lung infection so this break gave time to antibiotic/steroid treatments. Back on the combo now for the past week with no issues with fevers or rigours yet. Pyrexia is a much more common side effect with the combo drugs than it is with Dabrafenib alone. The good news is that the vast majority of patients appear to only have one episode – mechanism for this not really understood. The accepted approach for dealing with this side effect appears to be a short treatment break followed by reinduction.

                Dabrafenib has worked very well for me  – clearing some tumors and stabilising others. It was still working OK at the point that Trametinib was introduced, but  my oncologist felt that the combo was a better long term option. I hope it works just was well for you!

                John

                 

                 

                 

                 

                • September 28, 2013 at 6:59 am
                Johnfdc7
                Participant

                  Hi Lyn

                  I was on Dabrafenib (Tafinlar) alone for over 8 months until my oncologist introduced Trametinib (Mekinist) about 7 weeks ago to make the combo. While on Dabrafenib alone I had some manageable side effects such as fatigue, arthralgia etc but I also had a couple of concerning skin lesions. The introduction of Trametinib went OK for the first five 5 weeks when I was hit with fevers and rigours. Fevers were becoming more difficult to control with medication so my oncologist pulled me off both drugs for a little over a week. It turned out that I also had an underlying lung infection so this break gave time to antibiotic/steroid treatments. Back on the combo now for the past week with no issues with fevers or rigours yet. Pyrexia is a much more common side effect with the combo drugs than it is with Dabrafenib alone. The good news is that the vast majority of patients appear to only have one episode – mechanism for this not really understood. The accepted approach for dealing with this side effect appears to be a short treatment break followed by reinduction.

                  Dabrafenib has worked very well for me  – clearing some tumors and stabilising others. It was still working OK at the point that Trametinib was introduced, but  my oncologist felt that the combo was a better long term option. I hope it works just was well for you!

                  John

                   

                   

                   

                   

                • September 28, 2013 at 2:57 am
                JoshF
                Participant
                  Lyn-

                  I don’t know anything on GSK Combo but you came to right place. I’m sure some on this forum will have insight for you.

                  Just wanted to say how sorry I am that after close to 30 years you have to deal with this. I was NED for 2.5 years and had good outlook but recently had recurrence that I’m dealing with. I wish you all the best!

                  Josh

                  • September 28, 2013 at 2:57 am
                  JoshF
                  Participant
                    Lyn-

                    I don’t know anything on GSK Combo but you came to right place. I’m sure some on this forum will have insight for you.

                    Just wanted to say how sorry I am that after close to 30 years you have to deal with this. I was NED for 2.5 years and had good outlook but recently had recurrence that I’m dealing with. I wish you all the best!

                    Josh

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