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questions about what to expect – lung mets
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questions about what to expect – lung mets

› Forums › General Melanoma Community › questions about what to expect – lung mets

  • Post
    • February 14, 2013 at 2:37 pm
    joy_
    Participant

      Unfortunately 2 1/2 NED for my husband has come to an end, and we are facing this battle again.  A swollen lymph node and routine chest xray revealed more mel with 3 tumors measuring up to 2.9cm ea in one of his lungs.  Next week he will having scans done to get the whole picture, and I know I should probably wait until all that information comes in, but based on what we know so far I am trying to understand what we should expect.

      Unfortunately 2 1/2 NED for my husband has come to an end, and we are facing this battle again.  A swollen lymph node and routine chest xray revealed more mel with 3 tumors measuring up to 2.9cm ea in one of his lungs.  Next week he will having scans done to get the whole picture, and I know I should probably wait until all that information comes in, but based on what we know so far I am trying to understand what we should expect.

      They have tested him for BRAF.  Do they typically do surgery to remove tumors on the lungs regardless of BRAF status or will that depend if there is any other involvment and/or what treatment is available based on his BRAF status?

      What kind of recovery time is expected with that surgery?

      What are the best treatment options out there right now?

      Is there anything else I should know while looking into options?  He did one month of interferon so does that disqualify us from trials?

      I know that is a lot of questions.  If I had gone with him to this appointment this week, there wouldn't be so many.  😉   Thanks in advance to anyone who can offer input.

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    • Replies
        • February 14, 2013 at 3:20 pm
        Phil S
        Participant
          Typically, you wouldnt have lung surgery, when there are other tumors and you husband needs systematic treatment to now target his whole body! Past Interferon use should have no effect on his getting into trials now that he is Stage 4. Get educated on the newest treatments, I always think you should get more than one opinion from melanoma specialists, and try not to panic! Treatment options have come along way and are changing all the time! You will need the information on his Braf mutation before you can know all your options! Your husband will need an educated advocate, you can stay strong! God Bless, and keep us posted! Valerie (Phil’s wife)

          • February 14, 2013 at 3:20 pm
          Phil S
          Participant
            Typically, you wouldnt have lung surgery, when there are other tumors and you husband needs systematic treatment to now target his whole body! Past Interferon use should have no effect on his getting into trials now that he is Stage 4. Get educated on the newest treatments, I always think you should get more than one opinion from melanoma specialists, and try not to panic! Treatment options have come along way and are changing all the time! You will need the information on his Braf mutation before you can know all your options! Your husband will need an educated advocate, you can stay strong! God Bless, and keep us posted! Valerie (Phil’s wife)

            • February 14, 2013 at 3:20 pm
            Phil S
            Participant
              Typically, you wouldnt have lung surgery, when there are other tumors and you husband needs systematic treatment to now target his whole body! Past Interferon use should have no effect on his getting into trials now that he is Stage 4. Get educated on the newest treatments, I always think you should get more than one opinion from melanoma specialists, and try not to panic! Treatment options have come along way and are changing all the time! You will need the information on his Braf mutation before you can know all your options! Your husband will need an educated advocate, you can stay strong! God Bless, and keep us posted! Valerie (Phil’s wife)

              • February 17, 2013 at 8:24 am
              DeniseK
              Participant
                Very similar situation to mine. Hopefully he’ll be braf positive and can get on zelboraf. Other options would be trials. Research trials first even if he is braf positive. A lot of breakthroughs. I unfortunately can’t do trials at this time due to brain mets but I’m hoping I can in the nrxt few months. No surgery on lungs for me 9 tumors in all lobes but hou can dosurgery on lungs if its isolated to one or two lobes. Sorry your going through this. Stay positive and keep asking questions.
                All my best, Denise
                • February 17, 2013 at 8:24 am
                DeniseK
                Participant
                  Very similar situation to mine. Hopefully he’ll be braf positive and can get on zelboraf. Other options would be trials. Research trials first even if he is braf positive. A lot of breakthroughs. I unfortunately can’t do trials at this time due to brain mets but I’m hoping I can in the nrxt few months. No surgery on lungs for me 9 tumors in all lobes but hou can dosurgery on lungs if its isolated to one or two lobes. Sorry your going through this. Stay positive and keep asking questions.
                  All my best, Denise
                  • February 17, 2013 at 8:24 am
                  DeniseK
                  Participant
                    Very similar situation to mine. Hopefully he’ll be braf positive and can get on zelboraf. Other options would be trials. Research trials first even if he is braf positive. A lot of breakthroughs. I unfortunately can’t do trials at this time due to brain mets but I’m hoping I can in the nrxt few months. No surgery on lungs for me 9 tumors in all lobes but hou can dosurgery on lungs if its isolated to one or two lobes. Sorry your going through this. Stay positive and keep asking questions.
                    All my best, Denise
                    • February 19, 2013 at 3:30 pm
                    DonJ
                    Participant

                      Unfortunately, our Daughter was not braf positive.  She did have surgeries on each lung within about two months of each other.  These were painful.  Once we ran the gambit at Duke and moved on to other alternatives we were told that we probably didn't need to have the surgeries.  Too late at that point.

                      Anyway, as another poster mentioned, here is a link of potential clinicaL trilas out there.

                      Keep the faith and never give up hope!

                       

                      http://www.clinicaltrials.gov/ct2/results?term=melanoma 

                      • February 19, 2013 at 3:30 pm
                      DonJ
                      Participant

                        Unfortunately, our Daughter was not braf positive.  She did have surgeries on each lung within about two months of each other.  These were painful.  Once we ran the gambit at Duke and moved on to other alternatives we were told that we probably didn't need to have the surgeries.  Too late at that point.

                        Anyway, as another poster mentioned, here is a link of potential clinicaL trilas out there.

                        Keep the faith and never give up hope!

                         

                        http://www.clinicaltrials.gov/ct2/results?term=melanoma 

                        • February 19, 2013 at 3:30 pm
                        DonJ
                        Participant

                          Unfortunately, our Daughter was not braf positive.  She did have surgeries on each lung within about two months of each other.  These were painful.  Once we ran the gambit at Duke and moved on to other alternatives we were told that we probably didn't need to have the surgeries.  Too late at that point.

                          Anyway, as another poster mentioned, here is a link of potential clinicaL trilas out there.

                          Keep the faith and never give up hope!

                           

                          http://www.clinicaltrials.gov/ct2/results?term=melanoma 

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