Good Appointment

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  • Post
    • November 20, 2013 at 1:49 am
    NYKaren
    Participant

      I saw Dr. Pavlick today. I don't know why, but I was a wreck before-hand. 

      When I messed myself up by staying off Tafilnar for 3 weeks, I wound up with 17 small brain mets, which were gamma knifed. Luckily, my lymph nodes were still clear. 

      I have a follow-up MRI on Dec 16th and then seeing neurologist right after that.

      As I'm typing this, I'm wondering why I didn't ask her about phase II PD1 trial; we just discussed phase III, and how it wouldn't be good for me. I will call tomorrow to ask about phase II trial. 

      ANYWAY, her plan is, after brain is deemed stable, to add another MEK inhibitor. Apparently, they've gotten really good, long-term results with this combo, and hopefully that will hold me over until PD1 is FDA approved, before 2015. 

      I'll find out about phase II trial and report back. 

      Karen

    Viewing 17 reply threads
    • Replies
        • November 20, 2013 at 2:55 am
        POW
        Participant

          Sounds like very good news, Karen! I will pray that those brain mets are really fried and that the BRAF/MEK combo works as well for you as it has for many others. This could be the start of something good, Baby!

          • November 20, 2013 at 2:55 am
          POW
          Participant

            Sounds like very good news, Karen! I will pray that those brain mets are really fried and that the BRAF/MEK combo works as well for you as it has for many others. This could be the start of something good, Baby!

            • November 20, 2013 at 2:55 am
            POW
            Participant

              Sounds like very good news, Karen! I will pray that those brain mets are really fried and that the BRAF/MEK combo works as well for you as it has for many others. This could be the start of something good, Baby!

                • November 20, 2013 at 3:33 am
                UrsulaZ
                Participant

                  Sounds like a pretty solid plan to me! I find that my emotions are unpredictable, too. I hope you are feeling a bit more at ease tonight.

                  • November 20, 2013 at 3:33 am
                  UrsulaZ
                  Participant

                    Sounds like a pretty solid plan to me! I find that my emotions are unpredictable, too. I hope you are feeling a bit more at ease tonight.

                    • November 20, 2013 at 3:33 am
                    UrsulaZ
                    Participant

                      Sounds like a pretty solid plan to me! I find that my emotions are unpredictable, too. I hope you are feeling a bit more at ease tonight.

                    • November 20, 2013 at 11:12 am
                    GAngel
                    Participant

                      Good news and plan!  Thanks for the update. I'm keeping you in my prayers.

                      God bless you.

                      Gina

                        • November 20, 2013 at 2:23 pm
                        Maureen038
                        Participant

                          That's wonderful news Karen!! I hope everything continues to go well for you! 

                          Maureen

                          • November 20, 2013 at 2:23 pm
                          Maureen038
                          Participant

                            That's wonderful news Karen!! I hope everything continues to go well for you! 

                            Maureen

                            • November 20, 2013 at 2:23 pm
                            Maureen038
                            Participant

                              That's wonderful news Karen!! I hope everything continues to go well for you! 

                              Maureen

                            • November 20, 2013 at 11:12 am
                            GAngel
                            Participant

                              Good news and plan!  Thanks for the update. I'm keeping you in my prayers.

                              God bless you.

                              Gina

                              • November 20, 2013 at 11:12 am
                              GAngel
                              Participant

                                Good news and plan!  Thanks for the update. I'm keeping you in my prayers.

                                God bless you.

                                Gina

                                • November 20, 2013 at 3:07 pm
                                awillett1991
                                Participant

                                  Great news Karen! Thanks for the update.

                                  Amy

                                  • November 20, 2013 at 3:07 pm
                                  awillett1991
                                  Participant

                                    Great news Karen! Thanks for the update.

                                    Amy

                                    • November 20, 2013 at 3:07 pm
                                    awillett1991
                                    Participant

                                      Great news Karen! Thanks for the update.

                                      Amy

                                      • November 20, 2013 at 5:01 pm
                                      Tina D
                                      Participant

                                        Great report..glad to hear this!

                                        Tina

                                        • November 20, 2013 at 5:01 pm
                                        Tina D
                                        Participant

                                          Great report..glad to hear this!

                                          Tina

                                          • November 20, 2013 at 5:01 pm
                                          Tina D
                                          Participant

                                            Great report..glad to hear this!

                                            Tina

                                            • November 21, 2013 at 3:44 pm
                                            aldakota22
                                            Participant

                                              Srr you hd a good visit also.Get on to your next course of treatment  asap.Wish i wiould have met you .Nice to put a face to another fighter.In my prayers.Keep on beating thr brast.   Al

                                              • November 21, 2013 at 3:44 pm
                                              aldakota22
                                              Participant

                                                Srr you hd a good visit also.Get on to your next course of treatment  asap.Wish i wiould have met you .Nice to put a face to another fighter.In my prayers.Keep on beating thr brast.   Al

                                                • November 21, 2013 at 3:44 pm
                                                aldakota22
                                                Participant

                                                  Srr you hd a good visit also.Get on to your next course of treatment  asap.Wish i wiould have met you .Nice to put a face to another fighter.In my prayers.Keep on beating thr brast.   Al

                                                  • November 21, 2013 at 3:44 pm
                                                  aldakota22
                                                  Participant

                                                    Srr you hd a good visit also.Get on to your next course of treatment  asap.Wish i wiould have met you .Nice to put a face to another fighter.In my prayers.Keep on beating thr brast.   Al

                                                      • November 21, 2013 at 5:37 pm
                                                      killmel
                                                      Participant

                                                        Karen,

                                                         

                                                        SOOOOOOOOOOOOOOOOOOO HAppy for you.

                                                        I can not imagine getting treated for 1 brain met and you had 17 mets treated. You are awesome.

                                                        Do you have any side effects from 17 mets zapped?

                                                         

                                                        Well Wishes

                                                        • November 24, 2013 at 9:29 pm
                                                        NYKaren
                                                        Participant

                                                          Hi, just saw this now.  No side effects except tired from anesthesia and I was last case, 8:00 pm. Not all hospitals use anesthesia, but I couldn't imagine lying still for 2 hours. I was told that when there a lot of small mets it's time-consuming to get them all mapped out and zapped. If I had been a morning case, I would have gone to work the next day…I took one more day to sleep. Fingers crossed–3 weeks till brain MRI & if still clear, time to add Menkinist and pray a lot!

                                                          karen

                                                          • November 24, 2013 at 9:29 pm
                                                          NYKaren
                                                          Participant

                                                            Hi, just saw this now.  No side effects except tired from anesthesia and I was last case, 8:00 pm. Not all hospitals use anesthesia, but I couldn't imagine lying still for 2 hours. I was told that when there a lot of small mets it's time-consuming to get them all mapped out and zapped. If I had been a morning case, I would have gone to work the next day…I took one more day to sleep. Fingers crossed–3 weeks till brain MRI & if still clear, time to add Menkinist and pray a lot!

                                                            karen

                                                            • November 24, 2013 at 9:29 pm
                                                            NYKaren
                                                            Participant

                                                              Hi, just saw this now.  No side effects except tired from anesthesia and I was last case, 8:00 pm. Not all hospitals use anesthesia, but I couldn't imagine lying still for 2 hours. I was told that when there a lot of small mets it's time-consuming to get them all mapped out and zapped. If I had been a morning case, I would have gone to work the next day…I took one more day to sleep. Fingers crossed–3 weeks till brain MRI & if still clear, time to add Menkinist and pray a lot!

                                                              karen

                                                              • November 21, 2013 at 5:37 pm
                                                              killmel
                                                              Participant

                                                                Karen,

                                                                 

                                                                SOOOOOOOOOOOOOOOOOOO HAppy for you.

                                                                I can not imagine getting treated for 1 brain met and you had 17 mets treated. You are awesome.

                                                                Do you have any side effects from 17 mets zapped?

                                                                 

                                                                Well Wishes

                                                                • November 21, 2013 at 5:37 pm
                                                                killmel
                                                                Participant

                                                                  Karen,

                                                                   

                                                                  SOOOOOOOOOOOOOOOOOOO HAppy for you.

                                                                  I can not imagine getting treated for 1 brain met and you had 17 mets treated. You are awesome.

                                                                  Do you have any side effects from 17 mets zapped?

                                                                   

                                                                  Well Wishes

                                                                • November 21, 2013 at 3:44 pm
                                                                aldakota22
                                                                Participant

                                                                  Srr you hd a good visit also.Get on to your next course of treatment  asap.Wish i wiould have met you .Nice to put a face to another fighter.In my prayers.Keep on beating thr brast.   Al

                                                                  • November 21, 2013 at 3:44 pm
                                                                  aldakota22
                                                                  Participant

                                                                    Srr you hd a good visit also.Get on to your next course of treatment  asap.Wish i wiould have met you .Nice to put a face to another fighter.In my prayers.Keep on beating thr brast.   Al

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