Zelboraf experiences?
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Zelboraf experiences?

› Forums › General Melanoma Community › Zelboraf experiences?

  • Post
    • March 11, 2016 at 1:16 am
    DZnDef
    Participant

    Hello all you wonderful people!

    My brother has just today started Zelboraf.  Could any of you that have been on this drug share your experiences?  It will help us to know what to expect.

    For those of you that have followed my brother's story, he was supposed to start Nivo this week.  But unfortunately, he had swelling in his brain due to reducing the Doxymethasone too quickly over this past weekend.  He has been hospitalized ever since.  They've reduced the swelling via IV steroids so he no longer speaks as though he is on an acid trip.  But his doctor determined he is too weak and his tumor burden too high to start with Nivo so he is starting with Zelboraf.

    As a side bonus, I took him with me to visit my own oncologist, Dr. Steven O'Day, two weeks ago and Dr. O'Day offered to consult with my brother's Doctor on his treatment.  I thought that was awfully kind of him.  So my brother's Kaiser doctor has been speaking with Dr. O'Day.

    Looking forward to any Zelboraf (Vemufranib (sp?)) stories you all can share.

    Cheers!

    Maggie

Viewing 5 reply threads
  • Replies
      • March 11, 2016 at 1:44 am
      Polymath
      Participant

      Hi Maggie,

      Sorry to hear about your brother.  If you have read some of my posts in the past I have mentioned my experience on Zelboraf frequently.  Those who are BRAF positive are candidates for this drug, and in my case it was the very first drug treatment I received.  It sounds like a good option here as it's known to act fast and reduce tumor size quickly and dramatically.  Downside is it typically runs its course, becoming ineffective around the 6-month mark, with a wide variety of results with different people.  I progressed after only 3 months, but someone recently wrote here that has been on it for years.  The most common side-effects are skin rash, hair loss and photosensitivity.  In my case it was much, much worse but no use scaring anyone here.  Everyone is different.  My case reads like horror movie script.  But it was very effective, for the time it worked.  

      Gary

      • March 11, 2016 at 1:44 am
      Polymath
      Participant

      Hi Maggie,

      Sorry to hear about your brother.  If you have read some of my posts in the past I have mentioned my experience on Zelboraf frequently.  Those who are BRAF positive are candidates for this drug, and in my case it was the very first drug treatment I received.  It sounds like a good option here as it's known to act fast and reduce tumor size quickly and dramatically.  Downside is it typically runs its course, becoming ineffective around the 6-month mark, with a wide variety of results with different people.  I progressed after only 3 months, but someone recently wrote here that has been on it for years.  The most common side-effects are skin rash, hair loss and photosensitivity.  In my case it was much, much worse but no use scaring anyone here.  Everyone is different.  My case reads like horror movie script.  But it was very effective, for the time it worked.  

      Gary

        • March 11, 2016 at 6:48 pm
        DZnDef
        Participant

        Thanks for your post, Gary.  Very helpful.  It looks like you've had a really tough time getting ahead of this disease.  I hope you find the treatment that works for you really soon.

        Best

        Maggie

        • March 11, 2016 at 6:48 pm
        DZnDef
        Participant

        Thanks for your post, Gary.  Very helpful.  It looks like you've had a really tough time getting ahead of this disease.  I hope you find the treatment that works for you really soon.

        Best

        Maggie

        • March 11, 2016 at 6:48 pm
        DZnDef
        Participant

        Thanks for your post, Gary.  Very helpful.  It looks like you've had a really tough time getting ahead of this disease.  I hope you find the treatment that works for you really soon.

        Best

        Maggie

      • March 11, 2016 at 1:44 am
      Polymath
      Participant

      Hi Maggie,

      Sorry to hear about your brother.  If you have read some of my posts in the past I have mentioned my experience on Zelboraf frequently.  Those who are BRAF positive are candidates for this drug, and in my case it was the very first drug treatment I received.  It sounds like a good option here as it's known to act fast and reduce tumor size quickly and dramatically.  Downside is it typically runs its course, becoming ineffective around the 6-month mark, with a wide variety of results with different people.  I progressed after only 3 months, but someone recently wrote here that has been on it for years.  The most common side-effects are skin rash, hair loss and photosensitivity.  In my case it was much, much worse but no use scaring anyone here.  Everyone is different.  My case reads like horror movie script.  But it was very effective, for the time it worked.  

      Gary

      • March 12, 2016 at 8:18 pm
      Mat
      Participant

      Why would a melanoma specialist in the year 2016 prescribe a BRAFi without a MEKi (assuming that the patient hadn't demonstrated an intolerance to the MEKi)?

      • March 12, 2016 at 8:18 pm
      Mat
      Participant

      Why would a melanoma specialist in the year 2016 prescribe a BRAFi without a MEKi (assuming that the patient hadn't demonstrated an intolerance to the MEKi)?

      • March 12, 2016 at 8:18 pm
      Mat
      Participant

      Why would a melanoma specialist in the year 2016 prescribe a BRAFi without a MEKi (assuming that the patient hadn't demonstrated an intolerance to the MEKi)?

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