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Mucosal Melanoma
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Mucosal Melanoma

› Forums › Mucosal Melanoma Community › Mucosal Melanoma

  • Post
    • October 5, 2015 at 10:51 pm
    ashleyc
    Participant

      My father was diagnosed with mucosal melanoma of the nasal cavity in 2010. He was treated with surgery and radiation and had remained NED until two weeks ago where they found a recurrence further back in the nasal cavity. ENT is doing BRAF testing but its taking an extremely long time to get the results. He also referred him to Moores Cancer Center since we live in San Diego California but we couldn't get an appointment until the end of this month. Feeling hopeless waiting around with no plan and no answers. Any advice including of places where to seek out treatment would be appreciated. 

      Thank you concerned daughter, 

      -Ashley

    Viewing 8 reply threads
    • Replies
        • October 6, 2015 at 1:09 am
        arthurjedi007
        Participant

          How about dr hamid at the Los Angeles clinic? I hear from folks on here he is awesome.

          Artie

          • October 6, 2015 at 1:09 am
          arthurjedi007
          Participant

            How about dr hamid at the Los Angeles clinic? I hear from folks on here he is awesome.

            Artie

              • October 6, 2015 at 2:38 am
              ashleyc
              Participant

                I've left a message, but no luck yet on a call back. 

                -Thank you,

                Ashley 

                • October 6, 2015 at 2:38 am
                ashleyc
                Participant

                  I've left a message, but no luck yet on a call back. 

                  -Thank you,

                  Ashley 

                  • October 6, 2015 at 2:38 am
                  ashleyc
                  Participant

                    I've left a message, but no luck yet on a call back. 

                    -Thank you,

                    Ashley 

                  • October 6, 2015 at 1:09 am
                  arthurjedi007
                  Participant

                    How about dr hamid at the Los Angeles clinic? I hear from folks on here he is awesome.

                    Artie

                    • October 6, 2015 at 10:57 am
                    Kim K
                    Participant

                      C-Kit mutation is more common with mucosal mel, so have that tested as well.  Other meds tend to work better with C-Kit mutation that are not as commonly used for B-raf mutations.  You can do a topic search or research online for mucosal mel inhibitors / treatment responses.

                      Your father should at least get a PET/CT scan.  It can spread anywhere but mucosal often goes to the liver versus the lung.

                      Best of luck.

                      • October 6, 2015 at 10:57 am
                      Kim K
                      Participant

                        C-Kit mutation is more common with mucosal mel, so have that tested as well.  Other meds tend to work better with C-Kit mutation that are not as commonly used for B-raf mutations.  You can do a topic search or research online for mucosal mel inhibitors / treatment responses.

                        Your father should at least get a PET/CT scan.  It can spread anywhere but mucosal often goes to the liver versus the lung.

                        Best of luck.

                        • October 6, 2015 at 10:57 am
                        Kim K
                        Participant

                          C-Kit mutation is more common with mucosal mel, so have that tested as well.  Other meds tend to work better with C-Kit mutation that are not as commonly used for B-raf mutations.  You can do a topic search or research online for mucosal mel inhibitors / treatment responses.

                          Your father should at least get a PET/CT scan.  It can spread anywhere but mucosal often goes to the liver versus the lung.

                          Best of luck.

                          • October 6, 2015 at 10:58 am
                          Kim K
                          Participant

                            C-Kit mutation is more common with mucosal mel, so have that tested as well.  Other meds tend to work better with C-Kit mutation that are not as commonly used for B-raf mutations.  You can do a topic search or research online for mucosal mel inhibitors / treatment responses.

                            Your father should at least get a PET/CT scan.  It can spread anywhere but mucosal often goes to the liver versus the lung.

                            Best of luck.

                              • October 6, 2015 at 1:27 pm
                              mary1233
                              Participant

                                As someone who has experienced mucosal melanoma and is now in remisssion I beg you to get your father to a major research cancer center. He need to have a complete genomic testing done, not just BRAF. Most mucosal patients do not carry the BRAF mutation. At the time of my diagnosis the oncologist who made the diagnosis told me to go to Sloan Kettering because he had only seen it twice in his career and knew that he was not capable of treating it.

                                Do not play around with this. An ENT should have referred you immediately to the big guys. Melanoma spreads quickly so get him in now.

                                Best wishes.

                                Mary

                                • October 6, 2015 at 1:27 pm
                                mary1233
                                Participant

                                  As someone who has experienced mucosal melanoma and is now in remisssion I beg you to get your father to a major research cancer center. He need to have a complete genomic testing done, not just BRAF. Most mucosal patients do not carry the BRAF mutation. At the time of my diagnosis the oncologist who made the diagnosis told me to go to Sloan Kettering because he had only seen it twice in his career and knew that he was not capable of treating it.

                                  Do not play around with this. An ENT should have referred you immediately to the big guys. Melanoma spreads quickly so get him in now.

                                  Best wishes.

                                  Mary

                                  • October 6, 2015 at 1:27 pm
                                  mary1233
                                  Participant

                                    As someone who has experienced mucosal melanoma and is now in remisssion I beg you to get your father to a major research cancer center. He need to have a complete genomic testing done, not just BRAF. Most mucosal patients do not carry the BRAF mutation. At the time of my diagnosis the oncologist who made the diagnosis told me to go to Sloan Kettering because he had only seen it twice in his career and knew that he was not capable of treating it.

                                    Do not play around with this. An ENT should have referred you immediately to the big guys. Melanoma spreads quickly so get him in now.

                                    Best wishes.

                                    Mary

                                    • October 6, 2015 at 4:12 pm
                                    ashleyc
                                    Participant

                                      That's what I've been trying to do but the cancer center he referred us didn't give us an appointment for a month. Do you have any recommendations on how to get into a major cancer center?

                                      -Thank you

                                      Ashley

                                       

                                      • October 6, 2015 at 4:12 pm
                                      ashleyc
                                      Participant

                                        That's what I've been trying to do but the cancer center he referred us didn't give us an appointment for a month. Do you have any recommendations on how to get into a major cancer center?

                                        -Thank you

                                        Ashley

                                         

                                        • October 6, 2015 at 6:34 pm
                                        mary1233
                                        Participant

                                          My doctor who insisted that I go to a major cancer center had his office staff call and get me an appointment within a week. Ask your father's doctor if his staff can intervene for you. They have more pull than a "patient".

                                          Good luck.

                                          Mary

                                          • October 6, 2015 at 6:34 pm
                                          mary1233
                                          Participant

                                            My doctor who insisted that I go to a major cancer center had his office staff call and get me an appointment within a week. Ask your father's doctor if his staff can intervene for you. They have more pull than a "patient".

                                            Good luck.

                                            Mary

                                            • October 6, 2015 at 6:34 pm
                                            mary1233
                                            Participant

                                              My doctor who insisted that I go to a major cancer center had his office staff call and get me an appointment within a week. Ask your father's doctor if his staff can intervene for you. They have more pull than a "patient".

                                              Good luck.

                                              Mary

                                              • October 6, 2015 at 9:04 pm
                                              Patina
                                              Participant

                                                Call and make an appointment with Dr. Mike Wong at USC in Los Angels. He is fantastic!

                                                Even if you can't get in to see him first get a second opinion from him on treatment options.  – Dr. Wong is one of the best melanoma specialists in Southern California and I simply can't say enough about him or the rest of the team at USC who has treated my Mom. – She has stage IV with brain mets and its been comforting to know that one of the top radiology oncologists in the US, Dr. Eric Chang, is treating her. 

                                                BTW – I recommend getting at least a second opinion. My Mom's third opinion saved her life because of a misdiagnosis. 

                                                Good luck.

                                                • October 6, 2015 at 9:04 pm
                                                Patina
                                                Participant

                                                  Call and make an appointment with Dr. Mike Wong at USC in Los Angels. He is fantastic!

                                                  Even if you can't get in to see him first get a second opinion from him on treatment options.  – Dr. Wong is one of the best melanoma specialists in Southern California and I simply can't say enough about him or the rest of the team at USC who has treated my Mom. – She has stage IV with brain mets and its been comforting to know that one of the top radiology oncologists in the US, Dr. Eric Chang, is treating her. 

                                                  BTW – I recommend getting at least a second opinion. My Mom's third opinion saved her life because of a misdiagnosis. 

                                                  Good luck.

                                                  • October 6, 2015 at 9:04 pm
                                                  Patina
                                                  Participant

                                                    Call and make an appointment with Dr. Mike Wong at USC in Los Angels. He is fantastic!

                                                    Even if you can't get in to see him first get a second opinion from him on treatment options.  – Dr. Wong is one of the best melanoma specialists in Southern California and I simply can't say enough about him or the rest of the team at USC who has treated my Mom. – She has stage IV with brain mets and its been comforting to know that one of the top radiology oncologists in the US, Dr. Eric Chang, is treating her. 

                                                    BTW – I recommend getting at least a second opinion. My Mom's third opinion saved her life because of a misdiagnosis. 

                                                    Good luck.

                                                    • October 6, 2015 at 4:12 pm
                                                    ashleyc
                                                    Participant

                                                      That's what I've been trying to do but the cancer center he referred us didn't give us an appointment for a month. Do you have any recommendations on how to get into a major cancer center?

                                                      -Thank you

                                                      Ashley

                                                       

                                                    • October 6, 2015 at 10:58 am
                                                    Kim K
                                                    Participant

                                                      C-Kit mutation is more common with mucosal mel, so have that tested as well.  Other meds tend to work better with C-Kit mutation that are not as commonly used for B-raf mutations.  You can do a topic search or research online for mucosal mel inhibitors / treatment responses.

                                                      Your father should at least get a PET/CT scan.  It can spread anywhere but mucosal often goes to the liver versus the lung.

                                                      Best of luck.

                                                      • October 6, 2015 at 10:58 am
                                                      Kim K
                                                      Participant

                                                        C-Kit mutation is more common with mucosal mel, so have that tested as well.  Other meds tend to work better with C-Kit mutation that are not as commonly used for B-raf mutations.  You can do a topic search or research online for mucosal mel inhibitors / treatment responses.

                                                        Your father should at least get a PET/CT scan.  It can spread anywhere but mucosal often goes to the liver versus the lung.

                                                        Best of luck.

                                                    Viewing 8 reply threads

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