Survival of complete responders with Verumafinib

› Forums › General Melanoma Community › Survival of complete responders with Verumafinib

  • Post
    • August 12, 2012 at 5:01 pm
    Krha13
    Participant

      Hello, we have been lucky and my wife is coming up to 2 years on the Braf3 study having been randomised to Verumafinib. It seems very difficult to get information on complete responders. My wife was desperatly ill with lymphangitis in both lungs , a large left pleural effusion and left pleural mass- only walking a few steps with  Oxygen. Within 16 hours she was walking without Oxygen and has done well (adverse effects allowing). Scans improved quickly and clear at about 3 months. One small pulmonary slow growing melonama recurrence resected 5 months ago

      Hello, we have been lucky and my wife is coming up to 2 years on the Braf3 study having been randomised to Verumafinib. It seems very difficult to get information on complete responders. My wife was desperatly ill with lymphangitis in both lungs , a large left pleural effusion and left pleural mass- only walking a few steps with  Oxygen. Within 16 hours she was walking without Oxygen and has done well (adverse effects allowing). Scans improved quickly and clear at about 3 months. One small pulmonary slow growing melonama recurrence resected 5 months ago

      Is my wife one of the longest survivors on Verumafinib?

      What happens if the drug is stopped?

      Cannot find any report of severe pain only on light or unexpected touch- is this a problem in others?

       

      K A

    Viewing 8 reply threads
    • Replies
        • August 13, 2012 at 5:30 pm
        Harry in Fair Oaks
        Participant

          Dick_K posted in June that he was 28 months into taking Zelboraf, and that all was going well for him.

          Best wishes,

          Harry

          • August 13, 2012 at 5:30 pm
          Harry in Fair Oaks
          Participant

            Dick_K posted in June that he was 28 months into taking Zelboraf, and that all was going well for him.

            Best wishes,

            Harry

            • August 13, 2012 at 5:30 pm
            Harry in Fair Oaks
            Participant

              Dick_K posted in June that he was 28 months into taking Zelboraf, and that all was going well for him.

              Best wishes,

              Harry

              • August 14, 2012 at 8:28 am
              Lisa – Aust
              Participant

                Hi

                My husband Craig has been on the GSK BRAF inhibitor for around 20 months now and has had a compete response. We have basically been told that he will stay on it until it stops working, and then look at the next options (Yervoy I imagine). I think there are a few who have been on it for 2+ years. I havent heard of anyone who has been on it long term then stopped working – that would be interesting to hear about. Craig doesnt have any problems with severe pain, sometimes he gets sore feet, but that is more likely from lots of running.

                Its good to hear from long term survivors – gives lots of hope 🙂

                Lisa – Aust

                • August 14, 2012 at 8:28 am
                Lisa – Aust
                Participant

                  Hi

                  My husband Craig has been on the GSK BRAF inhibitor for around 20 months now and has had a compete response. We have basically been told that he will stay on it until it stops working, and then look at the next options (Yervoy I imagine). I think there are a few who have been on it for 2+ years. I havent heard of anyone who has been on it long term then stopped working – that would be interesting to hear about. Craig doesnt have any problems with severe pain, sometimes he gets sore feet, but that is more likely from lots of running.

                  Its good to hear from long term survivors – gives lots of hope 🙂

                  Lisa – Aust

                  • August 14, 2012 at 8:28 am
                  Lisa – Aust
                  Participant

                    Hi

                    My husband Craig has been on the GSK BRAF inhibitor for around 20 months now and has had a compete response. We have basically been told that he will stay on it until it stops working, and then look at the next options (Yervoy I imagine). I think there are a few who have been on it for 2+ years. I havent heard of anyone who has been on it long term then stopped working – that would be interesting to hear about. Craig doesnt have any problems with severe pain, sometimes he gets sore feet, but that is more likely from lots of running.

                    Its good to hear from long term survivors – gives lots of hope 🙂

                    Lisa – Aust

                    • August 14, 2012 at 3:48 pm
                    Richard_K
                    Participant

                      As Harry mentioned, in two weeks I will have been on Zelboraf for 2 ½ years.  I also have not heard of any long-term people stopping because it stopped working.  I know I have been told I will continue as long as I am responding.

                      Dick

                      • August 14, 2012 at 3:48 pm
                      Richard_K
                      Participant

                        As Harry mentioned, in two weeks I will have been on Zelboraf for 2 ½ years.  I also have not heard of any long-term people stopping because it stopped working.  I know I have been told I will continue as long as I am responding.

                        Dick

                        • August 14, 2012 at 3:48 pm
                        Richard_K
                        Participant

                          As Harry mentioned, in two weeks I will have been on Zelboraf for 2 ½ years.  I also have not heard of any long-term people stopping because it stopped working.  I know I have been told I will continue as long as I am responding.

                          Dick

                      Viewing 8 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