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Treatment

Forums General Melanoma Community Treatment

  • Post
    Tracey R62
    Participant

      Question on gene mutations and treatment. What would you believe to be the best treatment for melanoma if one DOESN'T have BRAF or a CKIT mutation or the other more common one?

      Iam going in for surgery to remove my toe and my left groin lymph nodes Tuesday and just weighing my treatment options.  Sorry I don't have any more information, I am waiting on the actual report to be emailed then having the medical oncologist interpet it.  I just wanted some patient feedback.  Thank you.

    Viewing 8 reply threads
    • Replies
        Maureen038
        Participant

          Hi Tracey,

               I'm so sorry you are having to deal with so much, but the good news is there are many effective drugs for you. My husband had half of  his left big toe removed almost three years ago. It is a rare type of melanoma. Shirley Z on MIF is a great person to write or talk to on the phone. We have become good friends and check in on each other every couple of months. She is still stage three after I think six years. She does have to deal with lymphedema a lot. If you have trouble contacting her, please write me at [email protected]. I would be happy to answer any questions for you too. You are at MD Anderson which is one of the top centers for melanoma.  I would see if you could have Dr. Hwu as your doctor. He is well known in the melanoma field and he was trained at NIH.

                My husband has been stage four for over two years. You can read his history to see his treatments. He has worked full time most of the time. He feels great. He was just removed from the yervoy/opdivo trial because one nodule was not responding. We are meeting with his surgeon at NIH this week and his VATS surgery should be a week later. They will take his tissue and make TIL cells and freeze them so if he needs TIL treatment again, he will be set. This is the new future of melanoma! After surgery, he will continue taking opdivo which was just FDA approved. There are many very effective drugs. My husband is Braf wild type too and Ckit and Nras negative. The only treatment we would not do again is interferon. Take care of yourself. There are many wonderful people on this board so ask questions. Hopefully, you will be like Shirley Z and continue to be stage 3!! Make sure you read about lymphedema and ask your doctors. My husband had much difficulty with it too until this past year and it has vastly improved. 

          Maureen

          Maureen038
          Participant

            Hi Tracey,

                 I'm so sorry you are having to deal with so much, but the good news is there are many effective drugs for you. My husband had half of  his left big toe removed almost three years ago. It is a rare type of melanoma. Shirley Z on MIF is a great person to write or talk to on the phone. We have become good friends and check in on each other every couple of months. She is still stage three after I think six years. She does have to deal with lymphedema a lot. If you have trouble contacting her, please write me at [email protected]. I would be happy to answer any questions for you too. You are at MD Anderson which is one of the top centers for melanoma.  I would see if you could have Dr. Hwu as your doctor. He is well known in the melanoma field and he was trained at NIH.

                  My husband has been stage four for over two years. You can read his history to see his treatments. He has worked full time most of the time. He feels great. He was just removed from the yervoy/opdivo trial because one nodule was not responding. We are meeting with his surgeon at NIH this week and his VATS surgery should be a week later. They will take his tissue and make TIL cells and freeze them so if he needs TIL treatment again, he will be set. This is the new future of melanoma! After surgery, he will continue taking opdivo which was just FDA approved. There are many very effective drugs. My husband is Braf wild type too and Ckit and Nras negative. The only treatment we would not do again is interferon. Take care of yourself. There are many wonderful people on this board so ask questions. Hopefully, you will be like Shirley Z and continue to be stage 3!! Make sure you read about lymphedema and ask your doctors. My husband had much difficulty with it too until this past year and it has vastly improved. 

            Maureen

            Maureen038
            Participant

              Hi Tracey,

                   I'm so sorry you are having to deal with so much, but the good news is there are many effective drugs for you. My husband had half of  his left big toe removed almost three years ago. It is a rare type of melanoma. Shirley Z on MIF is a great person to write or talk to on the phone. We have become good friends and check in on each other every couple of months. She is still stage three after I think six years. She does have to deal with lymphedema a lot. If you have trouble contacting her, please write me at [email protected]. I would be happy to answer any questions for you too. You are at MD Anderson which is one of the top centers for melanoma.  I would see if you could have Dr. Hwu as your doctor. He is well known in the melanoma field and he was trained at NIH.

                    My husband has been stage four for over two years. You can read his history to see his treatments. He has worked full time most of the time. He feels great. He was just removed from the yervoy/opdivo trial because one nodule was not responding. We are meeting with his surgeon at NIH this week and his VATS surgery should be a week later. They will take his tissue and make TIL cells and freeze them so if he needs TIL treatment again, he will be set. This is the new future of melanoma! After surgery, he will continue taking opdivo which was just FDA approved. There are many very effective drugs. My husband is Braf wild type too and Ckit and Nras negative. The only treatment we would not do again is interferon. Take care of yourself. There are many wonderful people on this board so ask questions. Hopefully, you will be like Shirley Z and continue to be stage 3!! Make sure you read about lymphedema and ask your doctors. My husband had much difficulty with it too until this past year and it has vastly improved. 

              Maureen

              arthurjedi007
              Participant

                I would think immunotherapy. Like Maureen mentioned the yervoy/opdivo. I would think that is the best if you qualify for it. I'm just not sure what options are available for stage 3 and after your surgery you might be Ned so not sure about those options either. Sorry I'm not much help. Hopefully others like Maureen will be. Best of luck to you.

                Artie

                arthurjedi007
                Participant

                  I would think immunotherapy. Like Maureen mentioned the yervoy/opdivo. I would think that is the best if you qualify for it. I'm just not sure what options are available for stage 3 and after your surgery you might be Ned so not sure about those options either. Sorry I'm not much help. Hopefully others like Maureen will be. Best of luck to you.

                  Artie

                  arthurjedi007
                  Participant

                    I would think immunotherapy. Like Maureen mentioned the yervoy/opdivo. I would think that is the best if you qualify for it. I'm just not sure what options are available for stage 3 and after your surgery you might be Ned so not sure about those options either. Sorry I'm not much help. Hopefully others like Maureen will be. Best of luck to you.

                    Artie

                    Linny
                    Participant

                      Sorry to hear about your diagnosis. Do contact Maureen regarding ShirleyZ. Shirley hasn't posted much in the MIF forum recently so I assume she's just getting on with her life. Her story is quite inspirational. As far as I know, Shirley is still Stage IIIC.

                      If you there is no spread beyond your groin lymph nodes, you will be Stage III A, B, or C. If there is distant spread you will be Stage IV. Just over the past few years there have been some wonder-drugs approved for Stage IV patients. If you're Stage III, you're a bit better off but the tradeoff is that the only FDA approved option is Interferon, which is harsh and offers very little overall benefit. So the treatment options for Stage III are not all that great but hopefully that will change soon. Most people who are diagnosed with Stage III are offered the following treatment options: Interferon, "observation-only", or a clinical trial (if available). If I'm not mistaken, I think Shirley may have chosen "observation-only".

                       

                        Marianne quinn
                        Participant

                          Hi Trac-I'll be  thinking of you on Tuesday and sending good thoughts your way.. My husband had some issues with lympedema after the surgery and since it was in his arm, it will probably be less burdensome than yours.  We should have been more aggressive in treating it shortly after surgery. Be sure to see a physical therapist who specializes in lympedema ASAP.Do not be too anxious to remove the drains either. My husband believes it is flushing the random melanoma cells out of the body. No documentation, but it seems to make sense.

                          His lympedema is much better and doesn't effect him. He wears his compression sleeve all day. He golfs, skis, lifts weights, and does heavy yard work with no problems.

                          He continues to do well after ipi that was given in a clinical trial. I would definitely try to find one. Good luck

                          Marianne quinn
                          Participant

                            Hi Trac-I'll be  thinking of you on Tuesday and sending good thoughts your way.. My husband had some issues with lympedema after the surgery and since it was in his arm, it will probably be less burdensome than yours.  We should have been more aggressive in treating it shortly after surgery. Be sure to see a physical therapist who specializes in lympedema ASAP.Do not be too anxious to remove the drains either. My husband believes it is flushing the random melanoma cells out of the body. No documentation, but it seems to make sense.

                            His lympedema is much better and doesn't effect him. He wears his compression sleeve all day. He golfs, skis, lifts weights, and does heavy yard work with no problems.

                            He continues to do well after ipi that was given in a clinical trial. I would definitely try to find one. Good luck

                            Marianne quinn
                            Participant

                              Hi Trac-I'll be  thinking of you on Tuesday and sending good thoughts your way.. My husband had some issues with lympedema after the surgery and since it was in his arm, it will probably be less burdensome than yours.  We should have been more aggressive in treating it shortly after surgery. Be sure to see a physical therapist who specializes in lympedema ASAP.Do not be too anxious to remove the drains either. My husband believes it is flushing the random melanoma cells out of the body. No documentation, but it seems to make sense.

                              His lympedema is much better and doesn't effect him. He wears his compression sleeve all day. He golfs, skis, lifts weights, and does heavy yard work with no problems.

                              He continues to do well after ipi that was given in a clinical trial. I would definitely try to find one. Good luck

                              Marianne quinn
                              Participant

                                Hi Trac-I'll be  thinking of you on Tuesday and sending good thoughts your way.. My husband had some issues with lympedema after the surgery and since it was in his arm, it will probably be less burdensome than yours.  We should have been more aggressive in treating it shortly after surgery. Be sure to see a physical therapist who specializes in lympedema ASAP.Do not be too anxious to remove the drains either. My husband believes it is flushing the random melanoma cells out of the body. No documentation, but it seems to make sense.

                                His lympedema is much better and doesn't effect him. He wears his compression sleeve all day. He golfs, skis, lifts weights, and does heavy yard work with no problems.

                                He continues to do well after ipi that was given in a clinical trial. I would definitely try to find one. Good luck

                                Marianne quinn
                                Participant

                                  Hi Trac-I'll be  thinking of you on Tuesday and sending good thoughts your way.. My husband had some issues with lympedema after the surgery and since it was in his arm, it will probably be less burdensome than yours.  We should have been more aggressive in treating it shortly after surgery. Be sure to see a physical therapist who specializes in lympedema ASAP.Do not be too anxious to remove the drains either. My husband believes it is flushing the random melanoma cells out of the body. No documentation, but it seems to make sense.

                                  His lympedema is much better and doesn't effect him. He wears his compression sleeve all day. He golfs, skis, lifts weights, and does heavy yard work with no problems.

                                  He continues to do well after ipi that was given in a clinical trial. I would definitely try to find one. Good luck

                                  Marianne quinn
                                  Participant

                                    Hi Trac-I'll be  thinking of you on Tuesday and sending good thoughts your way.. My husband had some issues with lympedema after the surgery and since it was in his arm, it will probably be less burdensome than yours.  We should have been more aggressive in treating it shortly after surgery. Be sure to see a physical therapist who specializes in lympedema ASAP.Do not be too anxious to remove the drains either. My husband believes it is flushing the random melanoma cells out of the body. No documentation, but it seems to make sense.

                                    His lympedema is much better and doesn't effect him. He wears his compression sleeve all day. He golfs, skis, lifts weights, and does heavy yard work with no problems.

                                    He continues to do well after ipi that was given in a clinical trial. I would definitely try to find one. Good luck

                                  Linny
                                  Participant

                                    Sorry to hear about your diagnosis. Do contact Maureen regarding ShirleyZ. Shirley hasn't posted much in the MIF forum recently so I assume she's just getting on with her life. Her story is quite inspirational. As far as I know, Shirley is still Stage IIIC.

                                    If you there is no spread beyond your groin lymph nodes, you will be Stage III A, B, or C. If there is distant spread you will be Stage IV. Just over the past few years there have been some wonder-drugs approved for Stage IV patients. If you're Stage III, you're a bit better off but the tradeoff is that the only FDA approved option is Interferon, which is harsh and offers very little overall benefit. So the treatment options for Stage III are not all that great but hopefully that will change soon. Most people who are diagnosed with Stage III are offered the following treatment options: Interferon, "observation-only", or a clinical trial (if available). If I'm not mistaken, I think Shirley may have chosen "observation-only".

                                     

                                    Linny
                                    Participant

                                      Sorry to hear about your diagnosis. Do contact Maureen regarding ShirleyZ. Shirley hasn't posted much in the MIF forum recently so I assume she's just getting on with her life. Her story is quite inspirational. As far as I know, Shirley is still Stage IIIC.

                                      If you there is no spread beyond your groin lymph nodes, you will be Stage III A, B, or C. If there is distant spread you will be Stage IV. Just over the past few years there have been some wonder-drugs approved for Stage IV patients. If you're Stage III, you're a bit better off but the tradeoff is that the only FDA approved option is Interferon, which is harsh and offers very little overall benefit. So the treatment options for Stage III are not all that great but hopefully that will change soon. Most people who are diagnosed with Stage III are offered the following treatment options: Interferon, "observation-only", or a clinical trial (if available). If I'm not mistaken, I think Shirley may have chosen "observation-only".

                                       

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