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newly diagnosed

Forums General Melanoma Community newly diagnosed

  • Post
    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
        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

          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

              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.

                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.

                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

                  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

                      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

                        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

                        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

                          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

                              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.

                                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.

                                  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.

                                    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.

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