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    • March 24, 2014 at 10:59 pm
    Juanita
    Participant

      Hello Everyone. My husband Jay was diagnosed with melanomia last May 28 2013. We will always remember the date it was our 19 wedding anniversary . The surge said he got all the cancer so we didn't see an oncologist . In July  he had to have his aortic valve replaced.  Afterwards the shortness of breath didn't get better. Long story short, he has stage 4 melanomia. It's in his lungs and liver. He's had a round of chemo . They are now going to try to get him on the Tafinlar drug. We're going to the doctor tomorrow to see if he can take it.

       That's how I found this group, researching the drug. He is 54 will be 55 next month and this has been a nightmare year for us. He's on his disability and that's a blessing. He's never been sick he's one of those folks that is never ever sick. This cancer has forever changed how we look at life. I'm so very glad I found all of you . I found a post of a lady who husband had stage 4 and she was talking about this drug. I can't recall her name but she's the reason I'm on here. It was something wife of . I hope she's still on here. Her post was last year and she talked about the things I'm worried about also. 

      I'm sorry for being so long winded . Thank God for this group. Thank you one and all .Juanita , wife of Jay .

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    • Replies
        • March 24, 2014 at 11:20 pm
        Gene_S
        Participant

          Hi Juanita,

          First let me say I am sorry you have to join us here but on the other hand we are informative, caring and supportive.

          Are you seeing a Melanoma Specialist?  That is my first recommendation as there are many clinical trials out there.  Also to get copies of all his surgeries notes, scans, blood tests and pathology reports and keep in a file of your own.  If you do go to another doctor for a second opinion it will save you much time if you already have them.  Also a melanoma specialist knows more about the side effects and how to treat them if you are in a clinical trial or on anyone of the medications for melanoma better than a regular doctor or oncologist.

          If you state where you live someone might be able to help you with a melanoma specialist in your area.

          My husband like yours was never a sick person.  He had 4 surgeries and then an unresectable lesion and metastisis to the liver and lungs as well.  You can read about him in his profile if you would like.

          Judy (loving wife of Gene Stage IV and now NED ((no evidence of disease)) for over 1 year)

           

          • March 24, 2014 at 11:20 pm
          Gene_S
          Participant

            Hi Juanita,

            First let me say I am sorry you have to join us here but on the other hand we are informative, caring and supportive.

            Are you seeing a Melanoma Specialist?  That is my first recommendation as there are many clinical trials out there.  Also to get copies of all his surgeries notes, scans, blood tests and pathology reports and keep in a file of your own.  If you do go to another doctor for a second opinion it will save you much time if you already have them.  Also a melanoma specialist knows more about the side effects and how to treat them if you are in a clinical trial or on anyone of the medications for melanoma better than a regular doctor or oncologist.

            If you state where you live someone might be able to help you with a melanoma specialist in your area.

            My husband like yours was never a sick person.  He had 4 surgeries and then an unresectable lesion and metastisis to the liver and lungs as well.  You can read about him in his profile if you would like.

            Judy (loving wife of Gene Stage IV and now NED ((no evidence of disease)) for over 1 year)

             

              • March 25, 2014 at 1:57 am
              Marianne quinn
              Participant

                Judy- thanks for always answering these new posts. It was helpful to me to have someone care. 

                • March 25, 2014 at 1:57 am
                Marianne quinn
                Participant

                  Judy- thanks for always answering these new posts. It was helpful to me to have someone care. 

                  • March 25, 2014 at 1:57 am
                  Marianne quinn
                  Participant

                    Judy- thanks for always answering these new posts. It was helpful to me to have someone care. 

                    • March 25, 2014 at 1:34 pm
                    Gene_S
                    Participant

                      you are very welcome

                       

                      • March 25, 2014 at 1:34 pm
                      Gene_S
                      Participant

                        you are very welcome

                         

                        • March 25, 2014 at 1:34 pm
                        Gene_S
                        Participant

                          you are very welcome

                           

                        • March 24, 2014 at 11:20 pm
                        Gene_S
                        Participant

                          Hi Juanita,

                          First let me say I am sorry you have to join us here but on the other hand we are informative, caring and supportive.

                          Are you seeing a Melanoma Specialist?  That is my first recommendation as there are many clinical trials out there.  Also to get copies of all his surgeries notes, scans, blood tests and pathology reports and keep in a file of your own.  If you do go to another doctor for a second opinion it will save you much time if you already have them.  Also a melanoma specialist knows more about the side effects and how to treat them if you are in a clinical trial or on anyone of the medications for melanoma better than a regular doctor or oncologist.

                          If you state where you live someone might be able to help you with a melanoma specialist in your area.

                          My husband like yours was never a sick person.  He had 4 surgeries and then an unresectable lesion and metastisis to the liver and lungs as well.  You can read about him in his profile if you would like.

                          Judy (loving wife of Gene Stage IV and now NED ((no evidence of disease)) for over 1 year)

                           

                          • March 25, 2014 at 2:44 pm
                          SABKLYN
                          Participant

                            Hi Juanita,

                            looks like you may be in the Tupelo area.  I don't know if Dr. kellum is a melanoma specialist.  If not, you may want to consider having your husband seen at Vanderbilt.  A little farther away is MD Anderson in Houston.  However, both do specialize in Melanoma and as tricky as this disease can be, you may want to give this some thought.  All the best

                            • March 25, 2014 at 2:44 pm
                            SABKLYN
                            Participant

                              Hi Juanita,

                              looks like you may be in the Tupelo area.  I don't know if Dr. kellum is a melanoma specialist.  If not, you may want to consider having your husband seen at Vanderbilt.  A little farther away is MD Anderson in Houston.  However, both do specialize in Melanoma and as tricky as this disease can be, you may want to give this some thought.  All the best

                              • March 25, 2014 at 2:44 pm
                              SABKLYN
                              Participant

                                Hi Juanita,

                                looks like you may be in the Tupelo area.  I don't know if Dr. kellum is a melanoma specialist.  If not, you may want to consider having your husband seen at Vanderbilt.  A little farther away is MD Anderson in Houston.  However, both do specialize in Melanoma and as tricky as this disease can be, you may want to give this some thought.  All the best

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