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Brain Mets

› Forums › General Melanoma Community › Brain Mets

  • Post
    • October 4, 2012 at 11:35 pm
    Becky C.
    Participant

      Hi everyone.I have not been on in awhile but have been reading and keepin up with my fellow patients out there.  I was so sorry to hear about Kevin.He was so courageous in sharing his experience.  After being NED for alittle over a year, I just found out this week that I have brain mets, MRI says most likely from my melanoma primary which was on my foot. I have a total of six lesions, one larger one that I will have surgery on, then follow with radiation for the rest. Not sure what treatment will be beyond that. Naturally, I am scared to death.

      Hi everyone.I have not been on in awhile but have been reading and keepin up with my fellow patients out there.  I was so sorry to hear about Kevin.He was so courageous in sharing his experience.  After being NED for alittle over a year, I just found out this week that I have brain mets, MRI says most likely from my melanoma primary which was on my foot. I have a total of six lesions, one larger one that I will have surgery on, then follow with radiation for the rest. Not sure what treatment will be beyond that. Naturally, I am scared to death. I would really like to hear some success stories from those who were successfully treated for brain mets. I really appreciate it, thank you.

    Viewing 17 reply threads
    • Replies
        • October 5, 2012 at 12:34 am
        benp
        Participant

          Hi Becky, 

          I have had a total of 11 brain mets. I've had 2 craniotomies, gamma knife and TIL. Initial results show that some are shrinking) but I'll know more in a couple of weeks). I'm feeling good! Are you on any kind of immunotherapy (Ipi/Pd-1/TIL)? By radiation do you mean WBR or GK?

          Ben.

          • October 5, 2012 at 12:34 am
          benp
          Participant

            Hi Becky, 

            I have had a total of 11 brain mets. I've had 2 craniotomies, gamma knife and TIL. Initial results show that some are shrinking) but I'll know more in a couple of weeks). I'm feeling good! Are you on any kind of immunotherapy (Ipi/Pd-1/TIL)? By radiation do you mean WBR or GK?

            Ben.

            • October 5, 2012 at 12:34 am
            benp
            Participant

              Hi Becky, 

              I have had a total of 11 brain mets. I've had 2 craniotomies, gamma knife and TIL. Initial results show that some are shrinking) but I'll know more in a couple of weeks). I'm feeling good! Are you on any kind of immunotherapy (Ipi/Pd-1/TIL)? By radiation do you mean WBR or GK?

              Ben.

                • October 6, 2012 at 8:47 pm
                Becky C.
                Participant

                  No not yet. just found this out 2days ago. I am taking a steroid to help with swelling around the tumors.

                  • October 6, 2012 at 8:47 pm
                  Becky C.
                  Participant

                    No not yet. just found this out 2days ago. I am taking a steroid to help with swelling around the tumors.

                    • October 6, 2012 at 8:47 pm
                    Becky C.
                    Participant

                      No not yet. just found this out 2days ago. I am taking a steroid to help with swelling around the tumors.

                    • October 5, 2012 at 12:44 am
                    jmmm
                    Participant
                      In October 2011, my they found a huge (5.5 cm x 5.5 cm) tumor in my husband’s brain. Craniotomy + gamma knife to treat it and he has had clear MRI’s for almost a year! Last month he had a seizure from radiation induced necrosis, but it doing well on steroids and anti-seizure meds. Anxiously awaiting another MRI at the end of the month.
                      • October 5, 2012 at 12:44 am
                      jmmm
                      Participant
                        In October 2011, my they found a huge (5.5 cm x 5.5 cm) tumor in my husband’s brain. Craniotomy + gamma knife to treat it and he has had clear MRI’s for almost a year! Last month he had a seizure from radiation induced necrosis, but it doing well on steroids and anti-seizure meds. Anxiously awaiting another MRI at the end of the month.
                        • October 5, 2012 at 12:44 am
                        jmmm
                        Participant
                          In October 2011, my they found a huge (5.5 cm x 5.5 cm) tumor in my husband’s brain. Craniotomy + gamma knife to treat it and he has had clear MRI’s for almost a year! Last month he had a seizure from radiation induced necrosis, but it doing well on steroids and anti-seizure meds. Anxiously awaiting another MRI at the end of the month.
                          • October 5, 2012 at 5:57 am
                          Amanda
                          Participant

                            My Boyfriend had One 3cm met on his brain, as well as two smaller mets near his brain stem. He also has a met on his scalp that we can see.  He had a Craniotomy on the large met due to it bleeding and putting preasure causing a bad headache.  He then did a course of WBR.  We watched the met on his scalp shrink after the WBR and it's almost flat now. Took months for it to shrink completely.  Doc is assuming it has done the same to the other smaller two.  We have a scan coming next week to see what his mets in his lungs look like after the ipi.  His huge 9cm met on his pectoral muscle has remained stable since starting yervoy which was about 5 months ago..hoping the smaller lung mets have shrunk.  Scans will show.  I hope my input has helped.  God Bless.

                            • October 5, 2012 at 5:57 am
                            Amanda
                            Participant

                              My Boyfriend had One 3cm met on his brain, as well as two smaller mets near his brain stem. He also has a met on his scalp that we can see.  He had a Craniotomy on the large met due to it bleeding and putting preasure causing a bad headache.  He then did a course of WBR.  We watched the met on his scalp shrink after the WBR and it's almost flat now. Took months for it to shrink completely.  Doc is assuming it has done the same to the other smaller two.  We have a scan coming next week to see what his mets in his lungs look like after the ipi.  His huge 9cm met on his pectoral muscle has remained stable since starting yervoy which was about 5 months ago..hoping the smaller lung mets have shrunk.  Scans will show.  I hope my input has helped.  God Bless.

                              • October 5, 2012 at 5:57 am
                              Amanda
                              Participant

                                My Boyfriend had One 3cm met on his brain, as well as two smaller mets near his brain stem. He also has a met on his scalp that we can see.  He had a Craniotomy on the large met due to it bleeding and putting preasure causing a bad headache.  He then did a course of WBR.  We watched the met on his scalp shrink after the WBR and it's almost flat now. Took months for it to shrink completely.  Doc is assuming it has done the same to the other smaller two.  We have a scan coming next week to see what his mets in his lungs look like after the ipi.  His huge 9cm met on his pectoral muscle has remained stable since starting yervoy which was about 5 months ago..hoping the smaller lung mets have shrunk.  Scans will show.  I hope my input has helped.  God Bless.

                                • October 5, 2012 at 3:41 pm
                                Ali
                                Participant

                                  They found 25 small mets in my brain in June.  In September they were all gone after a treatment of Yervoy.  I thought brain mets were impossible, I was glad to be wrong.   I have heard radiation works very well in the brain.  Best of  luck!

                                    • October 6, 2012 at 8:49 pm
                                    Becky C.
                                    Participant

                                      Thanks for all your responses. I know every case is different, but hearing your experience definitely makes me feel encouraged.

                                      • October 6, 2012 at 8:49 pm
                                      Becky C.
                                      Participant

                                        Thanks for all your responses. I know every case is different, but hearing your experience definitely makes me feel encouraged.

                                        • October 6, 2012 at 8:49 pm
                                        Becky C.
                                        Participant

                                          Thanks for all your responses. I know every case is different, but hearing your experience definitely makes me feel encouraged.

                                        • October 5, 2012 at 3:41 pm
                                        Ali
                                        Participant

                                          They found 25 small mets in my brain in June.  In September they were all gone after a treatment of Yervoy.  I thought brain mets were impossible, I was glad to be wrong.   I have heard radiation works very well in the brain.  Best of  luck!

                                          • October 5, 2012 at 3:41 pm
                                          Ali
                                          Participant

                                            They found 25 small mets in my brain in June.  In September they were all gone after a treatment of Yervoy.  I thought brain mets were impossible, I was glad to be wrong.   I have heard radiation works very well in the brain.  Best of  luck!

                                            • October 5, 2012 at 6:33 pm
                                            jag
                                            Participant

                                              I have had 6 craniotomies to date.  No evidence of disease since 3/2008.  Have had 2 surgeries since then to clean up the radiation necrosis.

                                              Working full time.

                                              Just had a baby boy.

                                              Never thought I'd get my life back, but here I am.

                                              • October 5, 2012 at 6:33 pm
                                              jag
                                              Participant

                                                I have had 6 craniotomies to date.  No evidence of disease since 3/2008.  Have had 2 surgeries since then to clean up the radiation necrosis.

                                                Working full time.

                                                Just had a baby boy.

                                                Never thought I'd get my life back, but here I am.

                                                • October 5, 2012 at 6:33 pm
                                                jag
                                                Participant

                                                  I have had 6 craniotomies to date.  No evidence of disease since 3/2008.  Have had 2 surgeries since then to clean up the radiation necrosis.

                                                  Working full time.

                                                  Just had a baby boy.

                                                  Never thought I'd get my life back, but here I am.

                                                    • October 6, 2012 at 8:52 pm
                                                    Becky C.
                                                    Participant

                                                      Congrats on your new baby! I hope and pray that my treatment will be as soccessful as yours. By craniotomies, do you mean surgery for tumor removal?

                                                      • October 6, 2012 at 8:52 pm
                                                      Becky C.
                                                      Participant

                                                        Congrats on your new baby! I hope and pray that my treatment will be as soccessful as yours. By craniotomies, do you mean surgery for tumor removal?

                                                        • October 6, 2012 at 8:52 pm
                                                        Becky C.
                                                        Participant

                                                          Congrats on your new baby! I hope and pray that my treatment will be as soccessful as yours. By craniotomies, do you mean surgery for tumor removal?

                                                        • October 7, 2012 at 2:03 pm
                                                        kellygrl
                                                        Participant

                                                          My husband is a healthy 41 yr old with 11 brain tumors. Diagnosed in Mar 12, surgery not an option, but did have biopsy to test for BRAF mutation…  he has it, so Zelboraf  it is!  He first had 18 treatments of WBR which he tolerated well, but did not work.  So, now on to the Zelboraf! He has been on it 4 mos, 2 MRI's have shown all tumors are shrinking. He has very minimal side effects, feels great… oh, he did have to go off for a few wks because his lab work of the liver was high, but he went back on a lower dose as almost zero side effects. Next MRI in 3 mos & hoping Santa brings another good report!

                                                            Best of luck to you, stay strong!!  Kelly

                                                          • October 7, 2012 at 2:03 pm
                                                          kellygrl
                                                          Participant

                                                            My husband is a healthy 41 yr old with 11 brain tumors. Diagnosed in Mar 12, surgery not an option, but did have biopsy to test for BRAF mutation…  he has it, so Zelboraf  it is!  He first had 18 treatments of WBR which he tolerated well, but did not work.  So, now on to the Zelboraf! He has been on it 4 mos, 2 MRI's have shown all tumors are shrinking. He has very minimal side effects, feels great… oh, he did have to go off for a few wks because his lab work of the liver was high, but he went back on a lower dose as almost zero side effects. Next MRI in 3 mos & hoping Santa brings another good report!

                                                              Best of luck to you, stay strong!!  Kelly

                                                            • October 7, 2012 at 2:03 pm
                                                            kellygrl
                                                            Participant

                                                              My husband is a healthy 41 yr old with 11 brain tumors. Diagnosed in Mar 12, surgery not an option, but did have biopsy to test for BRAF mutation…  he has it, so Zelboraf  it is!  He first had 18 treatments of WBR which he tolerated well, but did not work.  So, now on to the Zelboraf! He has been on it 4 mos, 2 MRI's have shown all tumors are shrinking. He has very minimal side effects, feels great… oh, he did have to go off for a few wks because his lab work of the liver was high, but he went back on a lower dose as almost zero side effects. Next MRI in 3 mos & hoping Santa brings another good report!

                                                                Best of luck to you, stay strong!!  Kelly

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