Zelboraf for BRAF V600R or V600K

› Forums › General Melanoma Community › Zelboraf for BRAF V600R or V600K

  • Post
    • February 25, 2013 at 10:04 pm
    Janet Lee
    Participant

      I've seen some posts here that people have been treated with Zelboraf even if they didn't have the V600e mutation (they had V600K or V600-other-than E). Could you share with me how you got that treatment? My husband tested positive for BRAF, but he is V600R and the insurance company denied him the treatment. It was denied twice, and a third appeal has been sent. I've tried Genentech's various avenues for assistance, but even they won't help. It seems if your household earns > $100,000 per year you are not worthy of help.

      Thanks.

      I've seen some posts here that people have been treated with Zelboraf even if they didn't have the V600e mutation (they had V600K or V600-other-than E). Could you share with me how you got that treatment? My husband tested positive for BRAF, but he is V600R and the insurance company denied him the treatment. It was denied twice, and a third appeal has been sent. I've tried Genentech's various avenues for assistance, but even they won't help. It seems if your household earns > $100,000 per year you are not worthy of help.

      Thanks.

      Janet

    Viewing 5 reply threads
    • Replies
        • February 26, 2013 at 2:39 am
        awillett1991
        Participant
          Just wanted to say I’m sorry your still struggling with this. I think someone at DF is really letting you down. Try finding who is responsible as well as who the social worker for the melanoma dept is and start raising some he**!! Then find the financial counselor.

          They should know if they have another R patient that’s been treated. Or maybe you could find the same info from another center. Unfortunately a year ago my dr at MD Anderson told me “they had no idea if it would work for me or not”. Fortunately, it did.

          You might also try posting on the melanoma international foundation stage 4 forum. The moderator there, Catherine Poole, has lots of contacts inside the industry.

          Wish I could think of something else.
          Amy

          • February 26, 2013 at 2:39 am
          awillett1991
          Participant
            Just wanted to say I’m sorry your still struggling with this. I think someone at DF is really letting you down. Try finding who is responsible as well as who the social worker for the melanoma dept is and start raising some he**!! Then find the financial counselor.

            They should know if they have another R patient that’s been treated. Or maybe you could find the same info from another center. Unfortunately a year ago my dr at MD Anderson told me “they had no idea if it would work for me or not”. Fortunately, it did.

            You might also try posting on the melanoma international foundation stage 4 forum. The moderator there, Catherine Poole, has lots of contacts inside the industry.

            Wish I could think of something else.
            Amy

            • February 26, 2013 at 2:39 am
            awillett1991
            Participant
              Just wanted to say I’m sorry your still struggling with this. I think someone at DF is really letting you down. Try finding who is responsible as well as who the social worker for the melanoma dept is and start raising some he**!! Then find the financial counselor.

              They should know if they have another R patient that’s been treated. Or maybe you could find the same info from another center. Unfortunately a year ago my dr at MD Anderson told me “they had no idea if it would work for me or not”. Fortunately, it did.

              You might also try posting on the melanoma international foundation stage 4 forum. The moderator there, Catherine Poole, has lots of contacts inside the industry.

              Wish I could think of something else.
              Amy

                • February 26, 2013 at 12:56 pm
                POW
                Participant

                  I second Amy's suggestion. Contact Catherine Poole at the Melanoma International Foundation and ask for her help. She  knows a lot about who to contact for what. 

                  • February 26, 2013 at 12:56 pm
                  POW
                  Participant

                    I second Amy's suggestion. Contact Catherine Poole at the Melanoma International Foundation and ask for her help. She  knows a lot about who to contact for what. 

                    • February 26, 2013 at 1:00 pm
                    POW
                    Participant

                      Here is Catherine's email address: cpoole@melanomainternational.org  

                      You might also want to post your question on their "Stage IV" forum. 

                      • February 26, 2013 at 1:00 pm
                      POW
                      Participant

                        Here is Catherine's email address: cpoole@melanomainternational.org  

                        You might also want to post your question on their "Stage IV" forum. 

                        • February 26, 2013 at 1:00 pm
                        POW
                        Participant

                          Here is Catherine's email address: cpoole@melanomainternational.org  

                          You might also want to post your question on their "Stage IV" forum. 

                          • February 26, 2013 at 12:56 pm
                          POW
                          Participant

                            I second Amy's suggestion. Contact Catherine Poole at the Melanoma International Foundation and ask for her help. She  knows a lot about who to contact for what. 

                            • February 27, 2013 at 4:07 am
                            awillett1991
                            Participant
                              Had another idea – check out clinical trials. This one specifically looks for non-braf600E mutations and is just trying to determine if vemurafenib works for those… Same drug!

                              http://clinicaltrial.gov/ct2/show/NCT01586195

                              Amy

                              • February 27, 2013 at 4:07 am
                              awillett1991
                              Participant
                                Had another idea – check out clinical trials. This one specifically looks for non-braf600E mutations and is just trying to determine if vemurafenib works for those… Same drug!

                                http://clinicaltrial.gov/ct2/show/NCT01586195

                                Amy

                                • February 27, 2013 at 4:07 am
                                awillett1991
                                Participant
                                  Had another idea – check out clinical trials. This one specifically looks for non-braf600E mutations and is just trying to determine if vemurafenib works for those… Same drug!

                                  http://clinicaltrial.gov/ct2/show/NCT01586195

                                  Amy

                                • March 4, 2013 at 7:22 pm
                                Tim–MRF
                                Guest

                                  Janet:

                                  If you  are still looking for access to a BRAF inhibitor, I am in touch with a company that has a compassionate use program for patients with rare V600 mutations.  If you are interested I can find more detail on the program and connect you to the proper people to explore it further.

                                  Feel free to email me offline.

                                   

                                  Tim–MRF

                                  tturnham@melanoma.org

                                  • March 4, 2013 at 7:22 pm
                                  Tim–MRF
                                  Guest

                                    Janet:

                                    If you  are still looking for access to a BRAF inhibitor, I am in touch with a company that has a compassionate use program for patients with rare V600 mutations.  If you are interested I can find more detail on the program and connect you to the proper people to explore it further.

                                    Feel free to email me offline.

                                     

                                    Tim–MRF

                                    tturnham@melanoma.org

                                    • March 4, 2013 at 7:22 pm
                                    Tim–MRF
                                    Guest

                                      Janet:

                                      If you  are still looking for access to a BRAF inhibitor, I am in touch with a company that has a compassionate use program for patients with rare V600 mutations.  If you are interested I can find more detail on the program and connect you to the proper people to explore it further.

                                      Feel free to email me offline.

                                       

                                      Tim–MRF

                                      tturnham@melanoma.org

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