Good Appointment
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Good Appointment

› Forums › General Melanoma Community › Good Appointment

  • 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

Viewing 17 reply threads
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