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)?

                      Viewing 5 reply threads
                      • You must be logged in to reply to this topic.
                      About the MRF Patient Forum

                      The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                      The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                      Popular Topics