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newly diagnosed

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    • January 23, 2011 at 7:45 pm
    elefk
    Participant

      I am newly diagnosed with internal melanoma. I would like to hear about anyone on clinical trials or other treatment plans.

      I am newly diagnosed with internal melanoma. I would like to hear about anyone on clinical trials or other treatment plans.

    Viewing 5 reply threads
    • Replies
        • January 23, 2011 at 9:03 pm
        washoegal
        Participant

          Sorry about your diagnosis.  For folks here to give you a thoughtful response they will need a bit more information.  Location of tumor, size, any previous tratment, etc. 

          Good Luck

          Mary

          Stage 3

            • January 23, 2011 at 11:02 pm
            elefk
            Participant

              The main tumor was in the stomach. It was thought to be a GIST tumor, so I was put on Gleevec. Due to excessive bleeding, the tumor was surgically removed, along with part of my stomach.  Newest pathology report indicates melanoma. Waiting to see new oncologist.

              • January 23, 2011 at 11:02 pm
              elefk
              Participant

                The main tumor was in the stomach. It was thought to be a GIST tumor, so I was put on Gleevec. Due to excessive bleeding, the tumor was surgically removed, along with part of my stomach.  Newest pathology report indicates melanoma. Waiting to see new oncologist.

              • January 23, 2011 at 9:03 pm
              washoegal
              Participant

                Sorry about your diagnosis.  For folks here to give you a thoughtful response they will need a bit more information.  Location of tumor, size, any previous tratment, etc. 

                Good Luck

                Mary

                Stage 3

                • January 23, 2011 at 11:17 pm
                Fen
                Participant

                  I think before you start looking at trials you will need to learn more about your individual case.  It sounds like the next step may be to do a PET/CT scan to see if the disease has spread beyond the known tumor.     It is crucial that you see a melanoma specialist at a major melanoma center.  It's a funky kind of cancer so a general oncologist will not do.

                  This might be a scary time for you.  Not knowing the whole situation is reallllly uncomfortable.  All I can say is that melanoma is not an automatic death sentence.  There are many people on this board who have been diagnosed Stage IV and are doing fine after many years.

                  This is a warm, supportive place. Please post more information if you feel comfortable doing so – where you are being treated, what treatments you have learned about and anything else that concerns you.

                  Fen

                    • January 24, 2011 at 12:30 am
                    elefk
                    Participant

                      Dear Fen, I am so grateful to you for responding. I feel so lonely. They have done PET/CT scans when they thought this was a gist tumor and saw activity in the liver and the sternum, in addition to the primary tumor in the stomach. I am seeing a melanoma specialist at the Cleveland Clinic this Thursday and will share with you his treatment program. In the meantime, if you have any more thoughts, it would be a tremendous source of treament.  Sincerely, Earl

                      • January 24, 2011 at 12:30 am
                      elefk
                      Participant

                        Dear Fen, I am so grateful to you for responding. I feel so lonely. They have done PET/CT scans when they thought this was a gist tumor and saw activity in the liver and the sternum, in addition to the primary tumor in the stomach. I am seeing a melanoma specialist at the Cleveland Clinic this Thursday and will share with you his treatment program. In the meantime, if you have any more thoughts, it would be a tremendous source of treament.  Sincerely, Earl

                      • January 23, 2011 at 11:17 pm
                      Fen
                      Participant

                        I think before you start looking at trials you will need to learn more about your individual case.  It sounds like the next step may be to do a PET/CT scan to see if the disease has spread beyond the known tumor.     It is crucial that you see a melanoma specialist at a major melanoma center.  It's a funky kind of cancer so a general oncologist will not do.

                        This might be a scary time for you.  Not knowing the whole situation is reallllly uncomfortable.  All I can say is that melanoma is not an automatic death sentence.  There are many people on this board who have been diagnosed Stage IV and are doing fine after many years.

                        This is a warm, supportive place. Please post more information if you feel comfortable doing so – where you are being treated, what treatments you have learned about and anything else that concerns you.

                        Fen

                        • January 24, 2011 at 1:50 am
                        W.
                        Participant

                          How long did you take the Gleevec? Did they check for a possible response?

                          Sometimes melanoma of mucous membranes (like the stomach) do respond to Gleevec. You might want to ask the doctor about c-kit testing. If it is c-kit positive, Gleevec would be worth trying.

                          Here is some information from JerryFromFauq who has been taking Gleevec for a long time, I think:

                          http://www.melanoma.org/community/mpip/acral-lentiginous-melhanoma

                            • January 25, 2011 at 1:32 am
                            elefk
                            Participant

                              anonymous- thanks very much for communicating with me. You are obviously well informed. I was taking Gleevec for 2 weeks and it did evidence some necrosis in the tumor which they observed when they did the surgery to remove the tumor. Yes- it did test positive for c-kit, so we'll see on Thursday, when I have an appoinment with the melanoma oncologist, what he suggests.

                              • February 20, 2011 at 6:54 pm
                              JerryfromFauq
                              Participant

                                Yeah, for Gleevec.  Dasatinib is undergoing tests now for c-kit patients.  A friend that is on it has had her tumors go away.

                                • February 20, 2011 at 6:54 pm
                                JerryfromFauq
                                Participant

                                  Yeah, for Gleevec.  Dasatinib is undergoing tests now for c-kit patients.  A friend that is on it has had her tumors go away.

                                  • January 25, 2011 at 1:32 am
                                  elefk
                                  Participant

                                    anonymous- thanks very much for communicating with me. You are obviously well informed. I was taking Gleevec for 2 weeks and it did evidence some necrosis in the tumor which they observed when they did the surgery to remove the tumor. Yes- it did test positive for c-kit, so we'll see on Thursday, when I have an appoinment with the melanoma oncologist, what he suggests.

                                  • January 24, 2011 at 1:50 am
                                  W.
                                  Participant

                                    How long did you take the Gleevec? Did they check for a possible response?

                                    Sometimes melanoma of mucous membranes (like the stomach) do respond to Gleevec. You might want to ask the doctor about c-kit testing. If it is c-kit positive, Gleevec would be worth trying.

                                    Here is some information from JerryFromFauq who has been taking Gleevec for a long time, I think:

                                    http://www.melanoma.org/community/mpip/acral-lentiginous-melhanoma

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