PET scan results GSK combo
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PET scan results GSK combo

› Forums › General Melanoma Community › PET scan results GSK combo

  • Post
    • November 18, 2013 at 3:51 am
    Aussielyn
    Participant

    Just want to share my good news!

    I hope to lift the spirits of some fellow melanoma warriors by informing you that my 3 month scan results after being on GSK Braf/Mek combo showed all tumours have gone & there are no  new sites of disease! I had my dabrafenib dosage reduced to 200 mg a day after unpleasant side-effects around the 6- 8 week mark.

    I am feeling really well at the moment & doing all the things I used to do before beginning treatment. The only side- effect at the moment is mild joint pain in ankles & tightness in calf muscles during exercise- all very bearable! Hopefully this will give encouragement to anyone else starting this treatment- My oncology pharmacist informs me that they hope having melanoma will become like having a chronic disease where it is managed in the same way as ,for example , diabetes is. There are so many new treatments on the horizon so hang in there everyone!

    best wishes to all

    Lyn

Viewing 8 reply threads
  • Replies
      • November 18, 2013 at 5:30 am
      BrianP
      Participant

      Outstanding Lyn!  Thanks for sharing.  Enjoy your NED status.

      Brian

      • November 18, 2013 at 5:30 am
      BrianP
      Participant

      Outstanding Lyn!  Thanks for sharing.  Enjoy your NED status.

      Brian

      • November 18, 2013 at 5:30 am
      BrianP
      Participant

      Outstanding Lyn!  Thanks for sharing.  Enjoy your NED status.

      Brian

      • November 18, 2013 at 7:06 am
      Harry in Fair Oaks
      Participant

      Fabulous!  I have been on this drug combo for 2-1/2 years as part of the GSK clinical trial, and it's still keeping things at bay.  I hope your experience will be similar to mine.  I also had joint pains at the beginning, also fevers and chills/shakes.  The side-effects diminished with time. 

      One question:  You say the Dabrafenib was cut to 200 mg.  What was it originally?  I have been on 150mg/day since the beginning, together with 2 mg/day of the MEK.  My understanding is that what I am getting are the max amounts administered under the clinical trial protocol for the combo, so it's hard for me to understand why you are being prescribed at a dosage higher than was tested (for the combo).

      Best wishes,

      Harry

        • November 18, 2013 at 7:12 am
        Harry in Fair Oaks
        Participant

        OOPS! (never mind).  I just turned 60 and I guess my mind fog is accelarating.  I am taking a total of 300mg/day (150mg twice a day).  So were you reduced to 200 from 300?

        • November 18, 2013 at 7:48 am
        Aussielyn
        Participant

        Yes, Harry , that's right. I lasted on 150mg twice a day for a little over 6 weeks then the temperatures, dehydration & foot & leg  pain kicked in- so after a break off meds we tried the lesser dose of dabrafenib & so far so good. I'm now taking 50 mg tabs instead of 75 mg tabs & being weaned off low dosage of prednisone. My oncologist says the reduced dose shouldn't affect the efficacy of the treatment – I hope she's right on that score! How often do you have scans? I'm not on a trial – have compassionate access so probably won't be scanned as frequently as trial patients. 

        It's so great to know you're still going so well – keep it up & be an inspiration to us all! 

        I fully understand the mind lapse -I have them too & won't turn 60 till next year!

        regards, Lyn

         

        • November 18, 2013 at 3:42 pm
        Harry in Fair Oaks
        Participant

        I get scanned every 12 weeks now.  At the beginning of the trial, the scans were every 8 weeks, but after the 2-year mark GSK gratefully relaxed this.  In addition to the CT/MRI scans, I also get ECHO cardiograms.  And every 8 weeks I have a dermatologist exam.

        Best regards,

        Harry

        • November 18, 2013 at 3:42 pm
        Harry in Fair Oaks
        Participant

        I get scanned every 12 weeks now.  At the beginning of the trial, the scans were every 8 weeks, but after the 2-year mark GSK gratefully relaxed this.  In addition to the CT/MRI scans, I also get ECHO cardiograms.  And every 8 weeks I have a dermatologist exam.

        Best regards,

        Harry

        • November 18, 2013 at 3:42 pm
        Harry in Fair Oaks
        Participant

        I get scanned every 12 weeks now.  At the beginning of the trial, the scans were every 8 weeks, but after the 2-year mark GSK gratefully relaxed this.  In addition to the CT/MRI scans, I also get ECHO cardiograms.  And every 8 weeks I have a dermatologist exam.

        Best regards,

        Harry

        • November 18, 2013 at 7:48 am
        Aussielyn
        Participant

        Yes, Harry , that's right. I lasted on 150mg twice a day for a little over 6 weeks then the temperatures, dehydration & foot & leg  pain kicked in- so after a break off meds we tried the lesser dose of dabrafenib & so far so good. I'm now taking 50 mg tabs instead of 75 mg tabs & being weaned off low dosage of prednisone. My oncologist says the reduced dose shouldn't affect the efficacy of the treatment – I hope she's right on that score! How often do you have scans? I'm not on a trial – have compassionate access so probably won't be scanned as frequently as trial patients. 

        It's so great to know you're still going so well – keep it up & be an inspiration to us all! 

        I fully understand the mind lapse -I have them too & won't turn 60 till next year!

        regards, Lyn

         

        • November 18, 2013 at 7:48 am
        Aussielyn
        Participant

        Yes, Harry , that's right. I lasted on 150mg twice a day for a little over 6 weeks then the temperatures, dehydration & foot & leg  pain kicked in- so after a break off meds we tried the lesser dose of dabrafenib & so far so good. I'm now taking 50 mg tabs instead of 75 mg tabs & being weaned off low dosage of prednisone. My oncologist says the reduced dose shouldn't affect the efficacy of the treatment – I hope she's right on that score! How often do you have scans? I'm not on a trial – have compassionate access so probably won't be scanned as frequently as trial patients. 

        It's so great to know you're still going so well – keep it up & be an inspiration to us all! 

        I fully understand the mind lapse -I have them too & won't turn 60 till next year!

        regards, Lyn

         

        • November 18, 2013 at 7:12 am
        Harry in Fair Oaks
        Participant

        OOPS! (never mind).  I just turned 60 and I guess my mind fog is accelarating.  I am taking a total of 300mg/day (150mg twice a day).  So were you reduced to 200 from 300?

        • November 18, 2013 at 7:12 am
        Harry in Fair Oaks
        Participant

        OOPS! (never mind).  I just turned 60 and I guess my mind fog is accelarating.  I am taking a total of 300mg/day (150mg twice a day).  So were you reduced to 200 from 300?

      • November 18, 2013 at 7:06 am
      Harry in Fair Oaks
      Participant

      Fabulous!  I have been on this drug combo for 2-1/2 years as part of the GSK clinical trial, and it's still keeping things at bay.  I hope your experience will be similar to mine.  I also had joint pains at the beginning, also fevers and chills/shakes.  The side-effects diminished with time. 

      One question:  You say the Dabrafenib was cut to 200 mg.  What was it originally?  I have been on 150mg/day since the beginning, together with 2 mg/day of the MEK.  My understanding is that what I am getting are the max amounts administered under the clinical trial protocol for the combo, so it's hard for me to understand why you are being prescribed at a dosage higher than was tested (for the combo).

      Best wishes,

      Harry

      • November 18, 2013 at 7:06 am
      Harry in Fair Oaks
      Participant

      Fabulous!  I have been on this drug combo for 2-1/2 years as part of the GSK clinical trial, and it's still keeping things at bay.  I hope your experience will be similar to mine.  I also had joint pains at the beginning, also fevers and chills/shakes.  The side-effects diminished with time. 

      One question:  You say the Dabrafenib was cut to 200 mg.  What was it originally?  I have been on 150mg/day since the beginning, together with 2 mg/day of the MEK.  My understanding is that what I am getting are the max amounts administered under the clinical trial protocol for the combo, so it's hard for me to understand why you are being prescribed at a dosage higher than was tested (for the combo).

      Best wishes,

      Harry

      • November 18, 2013 at 10:33 am
      Mat
      Participant

      Lyn, I'm so glad to hear your news.  These are miracle drugs.  I'm in my 4th month–also getting great results.  There is a conference this week in Philadelphia.  The agenda suggests that GSK will be reporting updated data from one of its trials.

        • November 18, 2013 at 12:54 pm
        Maureen038
        Participant

        Excellent news Lyn!! You give hope to many stage 4 warriors!! 

        Maureen

        • November 18, 2013 at 12:54 pm
        Maureen038
        Participant

        Excellent news Lyn!! You give hope to many stage 4 warriors!! 

        Maureen

        • November 18, 2013 at 12:54 pm
        Maureen038
        Participant

        Excellent news Lyn!! You give hope to many stage 4 warriors!! 

        Maureen

        • November 19, 2013 at 11:27 am
        Aussielyn
        Participant

        Thanks guys for your input. 

        It will be really good to hear what GSK has to say about their melanoma drugs – we are so lucky to have access to them. 

        Mat , you must have started around the same time I did. –  beginning of august – it must be good having close contact with people on the same drugs – I feel like I'm on my own here – it's a coastal paradise but a long way from Sydney where there would be a support group . I don't know of anyone else on melanoma treatment let alone the Dabrafenib / Mek combo . I'm a real guinea pig up here ! I would love if either of you , Harry  & mat, have anything to share about your experiences with our GSK treatment to let me know  . Many thanks

        Best wishes,

        Lyn

        • November 19, 2013 at 11:27 am
        Aussielyn
        Participant

        Thanks guys for your input. 

        It will be really good to hear what GSK has to say about their melanoma drugs – we are so lucky to have access to them. 

        Mat , you must have started around the same time I did. –  beginning of august – it must be good having close contact with people on the same drugs – I feel like I'm on my own here – it's a coastal paradise but a long way from Sydney where there would be a support group . I don't know of anyone else on melanoma treatment let alone the Dabrafenib / Mek combo . I'm a real guinea pig up here ! I would love if either of you , Harry  & mat, have anything to share about your experiences with our GSK treatment to let me know  . Many thanks

        Best wishes,

        Lyn

        • November 19, 2013 at 11:27 am
        Aussielyn
        Participant

        Thanks guys for your input. 

        It will be really good to hear what GSK has to say about their melanoma drugs – we are so lucky to have access to them. 

        Mat , you must have started around the same time I did. –  beginning of august – it must be good having close contact with people on the same drugs – I feel like I'm on my own here – it's a coastal paradise but a long way from Sydney where there would be a support group . I don't know of anyone else on melanoma treatment let alone the Dabrafenib / Mek combo . I'm a real guinea pig up here ! I would love if either of you , Harry  & mat, have anything to share about your experiences with our GSK treatment to let me know  . Many thanks

        Best wishes,

        Lyn

        • November 19, 2013 at 11:27 am
        Aussielyn
        Participant

        Thanks guys for your input. 

        It will be really good to hear what GSK has to say about their melanoma drugs – we are so lucky to have access to them. 

        Mat , you must have started around the same time I did. –  beginning of august – it must be good having close contact with people on the same drugs – I feel like I'm on my own here – it's a coastal paradise but a long way from Sydney where there would be a support group . I don't know of anyone else on melanoma treatment let alone the Dabrafenib / Mek combo . I'm a real guinea pig up here ! I would love if either of you , Harry  & mat, have anything to share about your experiences with our GSK treatment to let me know  . Many thanks

        Best wishes,

        Lyn

        • November 19, 2013 at 11:27 am
        Aussielyn
        Participant

        Thanks guys for your input. 

        It will be really good to hear what GSK has to say about their melanoma drugs – we are so lucky to have access to them. 

        Mat , you must have started around the same time I did. –  beginning of august – it must be good having close contact with people on the same drugs – I feel like I'm on my own here – it's a coastal paradise but a long way from Sydney where there would be a support group . I don't know of anyone else on melanoma treatment let alone the Dabrafenib / Mek combo . I'm a real guinea pig up here ! I would love if either of you , Harry  & mat, have anything to share about your experiences with our GSK treatment to let me know  . Many thanks

        Best wishes,

        Lyn

        • November 19, 2013 at 2:23 pm
        Mat
        Participant

        Lyn, yes, I started on August 2nd.  I had great results at my 8 week scans (50-70% reduction in tumor size with some lung nodules resolving).  I started with a heavy and aggressive tumor burden, particularly in my liver.  I'll report when I have my 16 week scans within the next few weeks.  Thankfully, not much else to report–I've had minimal side effects from the outset.

        • November 19, 2013 at 2:23 pm
        Mat
        Participant

        Lyn, yes, I started on August 2nd.  I had great results at my 8 week scans (50-70% reduction in tumor size with some lung nodules resolving).  I started with a heavy and aggressive tumor burden, particularly in my liver.  I'll report when I have my 16 week scans within the next few weeks.  Thankfully, not much else to report–I've had minimal side effects from the outset.

        • February 4, 2015 at 4:31 am
        lilecare
        Participant

        I'm new to this website, but we have been offered the combo for my husband's stage IV. We have been doing Cannabis Oil and the MRI showed three tumor gone and the rest have shrunk, just trying to make a decision on whether we should continue with the C.O. or try the combo with the C.O. or just do the combo? 

        Any advise would be wonderful…

        Thanks!

        Lisa

        • February 4, 2015 at 4:31 am
        lilecare
        Participant

        I'm new to this website, but we have been offered the combo for my husband's stage IV. We have been doing Cannabis Oil and the MRI showed three tumor gone and the rest have shrunk, just trying to make a decision on whether we should continue with the C.O. or try the combo with the C.O. or just do the combo? 

        Any advise would be wonderful…

        Thanks!

        Lisa

        • February 4, 2015 at 4:31 am
        lilecare
        Participant

        I'm new to this website, but we have been offered the combo for my husband's stage IV. We have been doing Cannabis Oil and the MRI showed three tumor gone and the rest have shrunk, just trying to make a decision on whether we should continue with the C.O. or try the combo with the C.O. or just do the combo? 

        Any advise would be wonderful…

        Thanks!

        Lisa

        • November 19, 2013 at 2:23 pm
        Mat
        Participant

        Lyn, yes, I started on August 2nd.  I had great results at my 8 week scans (50-70% reduction in tumor size with some lung nodules resolving).  I started with a heavy and aggressive tumor burden, particularly in my liver.  I'll report when I have my 16 week scans within the next few weeks.  Thankfully, not much else to report–I've had minimal side effects from the outset.

        • November 19, 2013 at 11:27 am
        Aussielyn
        Participant

        Thanks guys for your input. 

        It will be really good to hear what GSK has to say about their melanoma drugs – we are so lucky to have access to them. 

        Mat , you must have started around the same time I did. –  beginning of august – it must be good having close contact with people on the same drugs – I feel like I'm on my own here – it's a coastal paradise but a long way from Sydney where there would be a support group . I don't know of anyone else on melanoma treatment let alone the Dabrafenib / Mek combo . I'm a real guinea pig up here ! I would love if either of you , Harry  & mat, have anything to share about your experiences with our GSK treatment to let me know  . Many thanks

        Best wishes,

        Lyn

      • November 18, 2013 at 10:33 am
      Mat
      Participant

      Lyn, I'm so glad to hear your news.  These are miracle drugs.  I'm in my 4th month–also getting great results.  There is a conference this week in Philadelphia.  The agenda suggests that GSK will be reporting updated data from one of its trials.

      • November 18, 2013 at 10:33 am
      Mat
      Participant

      Lyn, I'm so glad to hear your news.  These are miracle drugs.  I'm in my 4th month–also getting great results.  There is a conference this week in Philadelphia.  The agenda suggests that GSK will be reporting updated data from one of its trials.

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