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Yippee

  • Post
    NYKaren
    Participant

    I saw Dr. Pavlick yesterday after first having an MRI (brain), CT pelvis, chest & abdomen. All clear.   Brain is still a bit swollen but neurologist is very happy. I had just stopped Decadron, felt horrible. I'm back on 2 mg., going down to 1 and then 1 1/2 each week

    dr. Pavlivk is starting me on Menkenist. It should arrive by Friday ( if the mail order gets it in–they-re experiencing shortages– what a surprise).   So I will be on combo w/Tafinlar. Interesting that when she subscribes 2 mg/2x day, many people experience liver toxicity. So she'll start me om 1.5 mg./2x day and have bloods drawn tues or wed, depending on when I start it. 

    It is my great hope and prayer that this will hold me over until PD1 is approved. 

    Let's pray that we can finally beat the black beast!

    all the best,

    karen

Viewing 11 reply threads
  • Replies
      Brendan
      Participant

      Great news, Karen. Good luck with the Tafinlar (and the decadron taper).

      Brendan

      Brendan
      Participant

      Great news, Karen. Good luck with the Tafinlar (and the decadron taper).

      Brendan

      Brendan
      Participant

      Great news, Karen. Good luck with the Tafinlar (and the decadron taper).

      Brendan

      pd1gal
      Participant

      Karen,

      Very happy for you and hoping the best for you. Hope PD-1 becomes available sooner than later for you and many others……it will save many lives.

      I'll keep you in my prayers.

      pd1gal
      Participant

      Karen,

      Very happy for you and hoping the best for you. Hope PD-1 becomes available sooner than later for you and many others……it will save many lives.

      I'll keep you in my prayers.

      pd1gal
      Participant

      Karen,

      Very happy for you and hoping the best for you. Hope PD-1 becomes available sooner than later for you and many others……it will save many lives.

      I'll keep you in my prayers.

      JoshF
      Participant

      AWESOME!

      JoshF
      Participant

      AWESOME!

      JoshF
      Participant

      AWESOME!

      awillett1991
      Participant

      Yay! Well there's your Christmas gift! So happy for you! I'm definitely interested to see how the reduced dose of Mekinist works. I emailed my dr just the other day about it but haven't heard back yet.  Remind me how long you've been on the dab. 

      congrats! 

      Amy

      awillett1991
      Participant

      Yay! Well there's your Christmas gift! So happy for you! I'm definitely interested to see how the reduced dose of Mekinist works. I emailed my dr just the other day about it but haven't heard back yet.  Remind me how long you've been on the dab. 

      congrats! 

      Amy

        killmel
        Participant

        How wonderful for you to get a xmas miracle to be NED

        killmel
        Participant

        How wonderful for you to get a xmas miracle to be NED

        killmel
        Participant

        How wonderful for you to get a xmas miracle to be NED

        NYKaren
        Participant

        Hi, Amy. dab about 3.5 months.

        Annon:  Unfortunately, can't be considered NED because there's some small bit of mel in my ear, and on my face.  There is hope that the combo will take care of those.

        Karensmiley

        NYKaren
        Participant

        Hi, Amy. dab about 3.5 months.

        Annon:  Unfortunately, can't be considered NED because there's some small bit of mel in my ear, and on my face.  There is hope that the combo will take care of those.

        Karensmiley

        NYKaren
        Participant

        Hi, Amy. dab about 3.5 months.

        Annon:  Unfortunately, can't be considered NED because there's some small bit of mel in my ear, and on my face.  There is hope that the combo will take care of those.

        Karensmiley

      awillett1991
      Participant

      Yay! Well there's your Christmas gift! So happy for you! I'm definitely interested to see how the reduced dose of Mekinist works. I emailed my dr just the other day about it but haven't heard back yet.  Remind me how long you've been on the dab. 

      congrats! 

      Amy

Viewing 11 reply threads
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