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Brain met. Insight please
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Brain met. Insight please

› Forums › General Melanoma Community › Brain met. Insight please

  • Post
    • March 1, 2013 at 1:59 am
    akkcak
    Participant
      Just found out i have a 4mm spot in my brain that is near the thalamus. Was told it is too deep to biopsy. I don’t see dr until next week. Am i looking at srs? What about other treatments in conjunction with it? Can’t do yervoy. Other options?

      Thanks!
      Amy

      Just found out i have a 4mm spot in my brain that is near the thalamus. Was told it is too deep to biopsy. I don’t see dr until next week. Am i looking at srs? What about other treatments in conjunction with it? Can’t do yervoy. Other options?

      Thanks!
      Amy

    Viewing 11 reply threads
    • Replies
        • March 1, 2013 at 2:17 am
        awillett1991
        Participant
          I had SRS in Nov for two very small mets, one was 4mm. Easy procedure – 40 min to fit the mask, came back in a week, 1 hr otal treatment then done. I had a lot of claustrophobia ( they can give you something) no swelling, no pain, no after affects. Dr says it worked like a charm. Was tired for a couple of days, that’s all.

          Wishing you well.

          • March 1, 2013 at 2:17 am
          awillett1991
          Participant
            I had SRS in Nov for two very small mets, one was 4mm. Easy procedure – 40 min to fit the mask, came back in a week, 1 hr otal treatment then done. I had a lot of claustrophobia ( they can give you something) no swelling, no pain, no after affects. Dr says it worked like a charm. Was tired for a couple of days, that’s all.

            Wishing you well.

              • March 1, 2013 at 12:57 pm
              POW
              Participant

                Surgery would be my first choice. If that is not possible, SRS is a very good option. Perhaps even preferable to surgery in some people's estimation. My brother had SRS for one brain met and had no problem with it.

                Does this met now mean that you are officially Stage IV? Does this make you eligible for any clinical trials? Do you know if your tumors are BRAF positive?

                • March 1, 2013 at 12:57 pm
                POW
                Participant

                  Surgery would be my first choice. If that is not possible, SRS is a very good option. Perhaps even preferable to surgery in some people's estimation. My brother had SRS for one brain met and had no problem with it.

                  Does this met now mean that you are officially Stage IV? Does this make you eligible for any clinical trials? Do you know if your tumors are BRAF positive?

                  • March 1, 2013 at 6:51 pm
                  akkcak
                  Participant
                    I’m assuming it means i’m stage 4. Can’t do surgery since it is deep. I haven’t been tested for braf. I’m in limbo right now. I have my melanoma specialist at one hospital but i also have a local oncologist. I’ve only gotten preliminary info from local dr. Waiting for specialist to receive and review scans. Hoping to see mel dr next week to get some answers.

                    Thank you everyone!
                    Amy

                    • March 1, 2013 at 6:51 pm
                    akkcak
                    Participant
                      I’m assuming it means i’m stage 4. Can’t do surgery since it is deep. I haven’t been tested for braf. I’m in limbo right now. I have my melanoma specialist at one hospital but i also have a local oncologist. I’ve only gotten preliminary info from local dr. Waiting for specialist to receive and review scans. Hoping to see mel dr next week to get some answers.

                      Thank you everyone!
                      Amy

                      • March 1, 2013 at 6:51 pm
                      akkcak
                      Participant
                        I’m assuming it means i’m stage 4. Can’t do surgery since it is deep. I haven’t been tested for braf. I’m in limbo right now. I have my melanoma specialist at one hospital but i also have a local oncologist. I’ve only gotten preliminary info from local dr. Waiting for specialist to receive and review scans. Hoping to see mel dr next week to get some answers.

                        Thank you everyone!
                        Amy

                        • March 1, 2013 at 12:57 pm
                        POW
                        Participant

                          Surgery would be my first choice. If that is not possible, SRS is a very good option. Perhaps even preferable to surgery in some people's estimation. My brother had SRS for one brain met and had no problem with it.

                          Does this met now mean that you are officially Stage IV? Does this make you eligible for any clinical trials? Do you know if your tumors are BRAF positive?

                        • March 1, 2013 at 2:17 am
                        awillett1991
                        Participant
                          I had SRS in Nov for two very small mets, one was 4mm. Easy procedure – 40 min to fit the mask, came back in a week, 1 hr otal treatment then done. I had a lot of claustrophobia ( they can give you something) no swelling, no pain, no after affects. Dr says it worked like a charm. Was tired for a couple of days, that’s all.

                          Wishing you well.

                          • March 1, 2013 at 2:28 am
                          Phil S
                          Participant
                            Amy, You can do radiation and chemo/temodar for brain mets. Also, can you look into AntiPD1 trials in your area?? You will need to be stable in the brain before you can do a trial, but good to look now and know where the trials are located. I always try to have plans B,C, and D in place! I know this news must be incredibly scary, but just get that tumor zapped and move on with treatment. My husband had several brain tumors in the Fall of 2011, had a craniotomy, WBR, biochemo (which included temodar), and TIL trial. His brain has been stable since November 2011, and he is feeling well. It can be FOUGHT, one day at a time! Best wishes, Valerie (Phil’s wife)
                            • March 1, 2013 at 2:28 am
                            Phil S
                            Participant
                              Amy, You can do radiation and chemo/temodar for brain mets. Also, can you look into AntiPD1 trials in your area?? You will need to be stable in the brain before you can do a trial, but good to look now and know where the trials are located. I always try to have plans B,C, and D in place! I know this news must be incredibly scary, but just get that tumor zapped and move on with treatment. My husband had several brain tumors in the Fall of 2011, had a craniotomy, WBR, biochemo (which included temodar), and TIL trial. His brain has been stable since November 2011, and he is feeling well. It can be FOUGHT, one day at a time! Best wishes, Valerie (Phil’s wife)
                              • March 1, 2013 at 2:28 am
                              Phil S
                              Participant
                                Amy, You can do radiation and chemo/temodar for brain mets. Also, can you look into AntiPD1 trials in your area?? You will need to be stable in the brain before you can do a trial, but good to look now and know where the trials are located. I always try to have plans B,C, and D in place! I know this news must be incredibly scary, but just get that tumor zapped and move on with treatment. My husband had several brain tumors in the Fall of 2011, had a craniotomy, WBR, biochemo (which included temodar), and TIL trial. His brain has been stable since November 2011, and he is feeling well. It can be FOUGHT, one day at a time! Best wishes, Valerie (Phil’s wife)
                                • March 1, 2013 at 12:05 pm
                                aldakota22
                                Participant

                                  Amy, Sorry you got bad news.Like many posts here I have read  brain mets can be treated and when caught early with much success.It is al scary stuff but you will get through it.In my prayers.Beat the Beast.  Al

                                  • March 1, 2013 at 12:05 pm
                                  aldakota22
                                  Participant

                                    Amy, Sorry you got bad news.Like many posts here I have read  brain mets can be treated and when caught early with much success.It is al scary stuff but you will get through it.In my prayers.Beat the Beast.  Al

                                    • March 1, 2013 at 12:05 pm
                                    aldakota22
                                    Participant

                                      Amy, Sorry you got bad news.Like many posts here I have read  brain mets can be treated and when caught early with much success.It is al scary stuff but you will get through it.In my prayers.Beat the Beast.  Al

                                      • March 3, 2013 at 1:41 am
                                      Carole K
                                      Participant

                                        HI Amy,

                                        First and foremost I do know hwo devastating this news can be. It sent me into a tailspin.  The most important thing is to take care of AMy now and depend on your support system.  They are invalueble. 

                                        I am a 12 year survivor of a single brain met.  Mine was behid my left occipital lobe which was easy to get to. I went in for Gamma Knife and the tumor had burst. I had a craniotomy the next day.  I have to say it was an easy procedure and I was home in two days ( they thought I would be in the hospital 7 to 10 days).  I did holistic follow up treatment wihc is not for everyone.  Hang in there Amy.  Sending you big hugs and healing thoughts. Love and LIght Carole K

                                        • March 3, 2013 at 1:41 am
                                        Carole K
                                        Participant

                                          HI Amy,

                                          First and foremost I do know hwo devastating this news can be. It sent me into a tailspin.  The most important thing is to take care of AMy now and depend on your support system.  They are invalueble. 

                                          I am a 12 year survivor of a single brain met.  Mine was behid my left occipital lobe which was easy to get to. I went in for Gamma Knife and the tumor had burst. I had a craniotomy the next day.  I have to say it was an easy procedure and I was home in two days ( they thought I would be in the hospital 7 to 10 days).  I did holistic follow up treatment wihc is not for everyone.  Hang in there Amy.  Sending you big hugs and healing thoughts. Love and LIght Carole K

                                          • March 3, 2013 at 1:41 am
                                          Carole K
                                          Participant

                                            HI Amy,

                                            First and foremost I do know hwo devastating this news can be. It sent me into a tailspin.  The most important thing is to take care of AMy now and depend on your support system.  They are invalueble. 

                                            I am a 12 year survivor of a single brain met.  Mine was behid my left occipital lobe which was easy to get to. I went in for Gamma Knife and the tumor had burst. I had a craniotomy the next day.  I have to say it was an easy procedure and I was home in two days ( they thought I would be in the hospital 7 to 10 days).  I did holistic follow up treatment wihc is not for everyone.  Hang in there Amy.  Sending you big hugs and healing thoughts. Love and LIght Carole K

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