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Mucosal Melonoma

Forums Mucosal Melanoma Community Mucosal Melonoma

  • Post
    J8cavan
    Participant

      I am looking for information from other people who have had mucosal melenoma. Do to the fact that this is a rare aggressive melonoma I would like to find out  about any level of successful treatments. I have completed 25 radiation treatments with the disease growing right through the treatments. I have tried ipi and temodar with continued growth. I am now on Carboplatin &Taxol and Avastin. Will do imaging in about 5 weeks to see if this is working. I have been to MD Anderson, Mayo Clinic Jacksonville and Moffitt Cancer Center in Tampa.

      I am looking for information from other people who have had mucosal melenoma. Do to the fact that this is a rare aggressive melonoma I would like to find out  about any level of successful treatments. I have completed 25 radiation treatments with the disease growing right through the treatments. I have tried ipi and temodar with continued growth. I am now on Carboplatin &Taxol and Avastin. Will do imaging in about 5 weeks to see if this is working. I have been to MD Anderson, Mayo Clinic Jacksonville and Moffitt Cancer Center in Tampa. I would just like to hear someone has found something to slow this stuff down or reversed it  to ned.Thanks in advance for taking the time to respond.

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    • Replies
        stillhopeful
        Participant

          You can find some people with mucosal here http://www.melanoma.org/community/mrf-bulletin-board/mucousal-melanoma

          You spelled it correctly, but probably missed this discussion because of the "mucousal" spelling.

          I have stage III mucosal.  It can be fast-moving, but you must have been diagnosed for some time to do all those treatments.

          The treatments that interest me the most are ipi, PL-1 and adoptive cell transfer therapy from the National Cancer Institute.  There are no magic bullets.

          Because it is so rare, everyone I've heard of with mucosal has been treated differently.  

          Hang in there!

            J8cavan
            Participant

              Thanks for the insights. Looking for someone who has had a successful treatment. Missed the spelling and will try search using correct spelling.

              J8cavan
              Participant

                Thanks for the insights. Looking for someone who has had a successful treatment. Missed the spelling and will try search using correct spelling.

              stillhopeful
              Participant

                You can find some people with mucosal here http://www.melanoma.org/community/mrf-bulletin-board/mucousal-melanoma

                You spelled it correctly, but probably missed this discussion because of the "mucousal" spelling.

                I have stage III mucosal.  It can be fast-moving, but you must have been diagnosed for some time to do all those treatments.

                The treatments that interest me the most are ipi, PL-1 and adoptive cell transfer therapy from the National Cancer Institute.  There are no magic bullets.

                Because it is so rare, everyone I've heard of with mucosal has been treated differently.  

                Hang in there!

                Jim in Denver
                Participant

                  Early on in my diagnostic process, I was told that I might have mucosal melanoma – turned out to not be accurate.  But in doing research, I found out the Gleevec is probably the most effective treatment for this typr of melanoma, but this is something about which you probably have been aware.  Has not at least one Doc at one of the very respected institutions you have visited discussed this treatment with you?

                  Best Wishes,

                  Jim

                    J8cavan
                    Participant

                      Yes I have discussed Gleevec. I tested negative for the C-kit mutation so gleevec was not discussed further. My doctor said the drug companies want to hold down  bad statistics so not much treatment has been done for negatve c-kit patients when the statistics were not good. This should be brought up with my doctor again. Thanks for bringing this up.

                      J8cavan
                      Participant

                        Yes I have discussed Gleevec. I tested negative for the C-kit mutation so gleevec was not discussed further. My doctor said the drug companies want to hold down  bad statistics so not much treatment has been done for negatve c-kit patients when the statistics were not good. This should be brought up with my doctor again. Thanks for bringing this up.

                      Jim in Denver
                      Participant

                        Early on in my diagnostic process, I was told that I might have mucosal melanoma – turned out to not be accurate.  But in doing research, I found out the Gleevec is probably the most effective treatment for this typr of melanoma, but this is something about which you probably have been aware.  Has not at least one Doc at one of the very respected institutions you have visited discussed this treatment with you?

                        Best Wishes,

                        Jim

                        Kevin from Atlanta
                        Participant

                          Take a look at Avastin. I took it for a year after a small trial group showed good results. Like many other cancer drugs, when the trials were expanded they didn't get the same results.

                          Article from yesterday

                           

                          But the deal has also brought problems. The biggest disappointment has been top-selling cancer drug Avastin — the key asset acquired with Genentech, with sales of $6 billion last year — which has failed in clinical trials for prostate and stomach cancer and may soon have its U.S. license revoked as a treatment for advanced breast cancer. Members of a U.S. advisory panel said in July that Avastin's modest benefits in advanced breast cancer — it delayed cancer growth by up to three months but didn't extend patients' lives in studies — were not enough to justify the drug's serious side effects. A decision from the Food and Drug Administration is expected by September 17.

                           

                          http://www.reuters.com/article/idUSTRE68E45L20100915

                           

                          Just look into Avastin for yourself. I do not regret taking it Avastin it was a good decsion at the time.

                            Kevin from Atlanta
                            Participant

                              I have no clue about mucosal melanoma and the effectiveness of Avastin on the mucosal melanoma.

                              Kevin from Atlanta
                              Participant

                                I have no clue about mucosal melanoma and the effectiveness of Avastin on the mucosal melanoma.

                                J8cavan
                                Participant

                                  I am currently on Avastin. I think it is thrown in with a lot of hope and some statistics. Thanks so much for your response. 

                                  J8cavan
                                  Participant

                                    I am currently on Avastin. I think it is thrown in with a lot of hope and some statistics. Thanks so much for your response. 

                                  Kevin from Atlanta
                                  Participant

                                    Take a look at Avastin. I took it for a year after a small trial group showed good results. Like many other cancer drugs, when the trials were expanded they didn't get the same results.

                                    Article from yesterday

                                     

                                    But the deal has also brought problems. The biggest disappointment has been top-selling cancer drug Avastin — the key asset acquired with Genentech, with sales of $6 billion last year — which has failed in clinical trials for prostate and stomach cancer and may soon have its U.S. license revoked as a treatment for advanced breast cancer. Members of a U.S. advisory panel said in July that Avastin's modest benefits in advanced breast cancer — it delayed cancer growth by up to three months but didn't extend patients' lives in studies — were not enough to justify the drug's serious side effects. A decision from the Food and Drug Administration is expected by September 17.

                                     

                                    http://www.reuters.com/article/idUSTRE68E45L20100915

                                     

                                    Just look into Avastin for yourself. I do not regret taking it Avastin it was a good decsion at the time.

                                    dian in spokane
                                    Participant

                                      I am sure others have mentioned Jerryfrom Fauq to you. He is, no doubt,  the most knowledgeable member when it comes to mucosal melanoma. He's currently off line due to a terrible horseback riding accident, but I am sure he would ask if you've had C-kit testing and he'd tell you to look into Gleevac.

                                      Gleevac was tested and discarded for treatment of melanoma many years ago, but apparently it has a much higher success rate with mucosal melanoma

                                      If you have the stamina for it, you can read Jerry's extensive treatment history on his profile page, here:

                                      https://www.melanoma.org/community/profiles/jerryfromfauq

                                      dian in spokane
                                      Participant

                                        I am sure others have mentioned Jerryfrom Fauq to you. He is, no doubt,  the most knowledgeable member when it comes to mucosal melanoma. He's currently off line due to a terrible horseback riding accident, but I am sure he would ask if you've had C-kit testing and he'd tell you to look into Gleevac.

                                        Gleevac was tested and discarded for treatment of melanoma many years ago, but apparently it has a much higher success rate with mucosal melanoma

                                        If you have the stamina for it, you can read Jerry's extensive treatment history on his profile page, here:

                                        https://www.melanoma.org/community/profiles/jerryfromfauq

                                          J8cavan
                                          Participant

                                            Thanks Mark I read Jerrys entire treatment history and found it useful. One promising noteis that he  has survived a long time after his diagnosis.

                                            J8cavan
                                            Participant

                                              Thanks Mark I read Jerrys entire treatment history and found it useful. One promising noteis that he  has survived a long time after his diagnosis.

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