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Melanoma spread to brain, 5 tumors
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Melanoma spread to brain, 5 tumors

› Forums › General Melanoma Community › Melanoma spread to brain, 5 tumors

  • Post
    • November 12, 2013 at 12:40 am
    cep3700
    Participant

      My mother was just diagnosed on Halloween in Baton Rouge Louisiana, with what the Doctors thought was  metastatic ovarian cancer, and a week later we found out that it has spread to her brain, and there are currently five tumors in her brain. Just last Friday the doctors decided that instead of ovarian cancer now they re read the biopsy and say it is melanoma,Need a new melanoma specialist! The doctors have misdiagnosed my mother twice and now I am looking for a new option, because this approach is very slow moving and our doctors seem to be confusing themselves. We are trying to go to MD Anderson. Any advice? Need to ACT FAST!!!! 

    Viewing 2 reply threads
    • Replies
        • November 12, 2013 at 1:24 am
        awillett1991
        Participant

          I have been to MDA and had very good care. They can move fast when they need to and have loads of experience with brain mets. Be aggressive. Get copies of your  mothers records and follow up. They will want you to send everything to them. Good luck!

          • November 12, 2013 at 1:24 am
          awillett1991
          Participant

            I have been to MDA and had very good care. They can move fast when they need to and have loads of experience with brain mets. Be aggressive. Get copies of your  mothers records and follow up. They will want you to send everything to them. Good luck!

              • November 12, 2013 at 1:43 am
              cep3700
              Participant

                Thank you so much, yes I am taking my Mother to MDA this week (hopefully) we have been back and forth with MDA but it seems that our contact person is not the most efficient, does it help if you get a referral from an oncologist? Thanks so much for your help, I read your bio to my mother and it has given her so much hope, no one has been optimistic here in Louisiana, but maybe at MDA they are more versed in seeing advanced melanoma. 

                Thank you so much, 

                Colleen

                • November 12, 2013 at 1:43 am
                cep3700
                Participant

                  Thank you so much, yes I am taking my Mother to MDA this week (hopefully) we have been back and forth with MDA but it seems that our contact person is not the most efficient, does it help if you get a referral from an oncologist? Thanks so much for your help, I read your bio to my mother and it has given her so much hope, no one has been optimistic here in Louisiana, but maybe at MDA they are more versed in seeing advanced melanoma. 

                  Thank you so much, 

                  Colleen

                  • November 12, 2013 at 2:53 pm
                  awillett1991
                  Participant

                    You will find doctors at MDA that have been dealing with melanoma as long as anyone. To the best I recall, having a referral doesn't make a difference. Once your mother is seen by one of the melanoma oncologists, things should go more smoothly. It seems like they wouldn't schedule my appt until they had all my information in hand, then it was about 2 weeks which seemed like forever, but is really pretty common. 

                    • November 12, 2013 at 2:53 pm
                    awillett1991
                    Participant

                      You will find doctors at MDA that have been dealing with melanoma as long as anyone. To the best I recall, having a referral doesn't make a difference. Once your mother is seen by one of the melanoma oncologists, things should go more smoothly. It seems like they wouldn't schedule my appt until they had all my information in hand, then it was about 2 weeks which seemed like forever, but is really pretty common. 

                      • November 12, 2013 at 2:53 pm
                      awillett1991
                      Participant

                        You will find doctors at MDA that have been dealing with melanoma as long as anyone. To the best I recall, having a referral doesn't make a difference. Once your mother is seen by one of the melanoma oncologists, things should go more smoothly. It seems like they wouldn't schedule my appt until they had all my information in hand, then it was about 2 weeks which seemed like forever, but is really pretty common. 

                        • November 12, 2013 at 5:19 pm
                        cep3700
                        Participant

                          ok thank you so much for all of your advice! we are trying to stay positive, but it is all happening so fast, and im sure you know how scary it all is, but I find that this website is very helpful, 

                          Thanks again!

                          -Colleen

                          • November 12, 2013 at 5:19 pm
                          cep3700
                          Participant

                            ok thank you so much for all of your advice! we are trying to stay positive, but it is all happening so fast, and im sure you know how scary it all is, but I find that this website is very helpful, 

                            Thanks again!

                            -Colleen

                            • November 12, 2013 at 5:19 pm
                            cep3700
                            Participant

                              ok thank you so much for all of your advice! we are trying to stay positive, but it is all happening so fast, and im sure you know how scary it all is, but I find that this website is very helpful, 

                              Thanks again!

                              -Colleen

                              • November 13, 2013 at 6:59 pm
                              Becky C.
                              Participant

                                I can't recommend MD Anderson enough  I am presently going there  I am on the anti-pd1 trial. My scans have shown great results.That is the place to go for Melanoma. I am seeing Dr. Wen-Jen Hu.

                                • November 13, 2013 at 6:59 pm
                                Becky C.
                                Participant

                                  I can't recommend MD Anderson enough  I am presently going there  I am on the anti-pd1 trial. My scans have shown great results.That is the place to go for Melanoma. I am seeing Dr. Wen-Jen Hu.

                                  • November 20, 2013 at 1:13 am
                                  cep3700
                                  Participant

                                    Thank you both for your advice, I have a couple more questions; 

                                    We cant stay in baton rouge anymore, the radiation machine keeps breaking and my mother cannot get the radiation that she has already started could  they finish the WBR at md anderson? (she has 5 days left) Does it normally take a long time for the zelboraf to come in? 

                                    Thanks for all of your support

                                     
                                    • November 20, 2013 at 1:13 am
                                    cep3700
                                    Participant

                                      Thank you both for your advice, I have a couple more questions; 

                                      We cant stay in baton rouge anymore, the radiation machine keeps breaking and my mother cannot get the radiation that she has already started could  they finish the WBR at md anderson? (she has 5 days left) Does it normally take a long time for the zelboraf to come in? 

                                      Thanks for all of your support

                                       
                                      • November 20, 2013 at 1:13 am
                                      cep3700
                                      Participant

                                        Thank you both for your advice, I have a couple more questions; 

                                        We cant stay in baton rouge anymore, the radiation machine keeps breaking and my mother cannot get the radiation that she has already started could  they finish the WBR at md anderson? (she has 5 days left) Does it normally take a long time for the zelboraf to come in? 

                                        Thanks for all of your support

                                         
                                        • November 13, 2013 at 6:59 pm
                                        Becky C.
                                        Participant

                                          I can't recommend MD Anderson enough  I am presently going there  I am on the anti-pd1 trial. My scans have shown great results.That is the place to go for Melanoma. I am seeing Dr. Wen-Jen Hu.

                                          • November 12, 2013 at 1:43 am
                                          cep3700
                                          Participant

                                            Thank you so much, yes I am taking my Mother to MDA this week (hopefully) we have been back and forth with MDA but it seems that our contact person is not the most efficient, does it help if you get a referral from an oncologist? Thanks so much for your help, I read your bio to my mother and it has given her so much hope, no one has been optimistic here in Louisiana, but maybe at MDA they are more versed in seeing advanced melanoma. 

                                            Thank you so much, 

                                            Colleen

                                          • November 12, 2013 at 1:24 am
                                          awillett1991
                                          Participant

                                            I have been to MDA and had very good care. They can move fast when they need to and have loads of experience with brain mets. Be aggressive. Get copies of your  mothers records and follow up. They will want you to send everything to them. Good luck!

                                        Viewing 2 reply threads
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