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Yippee

› Forums › General Melanoma Community › Yippee

  • Post
    • December 12, 2013 at 12:43 am
    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
        • December 12, 2013 at 12:52 am
        Brendan
        Participant

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

          Brendan

          • December 12, 2013 at 12:52 am
          Brendan
          Participant

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

            Brendan

            • December 12, 2013 at 12:52 am
            Brendan
            Participant

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

              Brendan

              • December 12, 2013 at 1:10 am
              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.

                • December 12, 2013 at 1:10 am
                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.

                  • December 12, 2013 at 1:10 am
                  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.

                    • December 12, 2013 at 2:37 am
                    JoshF
                    Participant

                      AWESOME!

                      • December 12, 2013 at 2:37 am
                      JoshF
                      Participant

                        AWESOME!

                        • December 12, 2013 at 2:37 am
                        JoshF
                        Participant

                          AWESOME!

                          • December 12, 2013 at 4:07 am
                          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

                            • December 12, 2013 at 4:07 am
                            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

                                • December 12, 2013 at 4:16 pm
                                killmel
                                Participant

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

                                  • December 12, 2013 at 4:16 pm
                                  killmel
                                  Participant

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

                                    • December 12, 2013 at 4:16 pm
                                    killmel
                                    Participant

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

                                      • December 12, 2013 at 7:09 pm
                                      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

                                        • December 12, 2013 at 7:09 pm
                                        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

                                          • December 12, 2013 at 7:09 pm
                                          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

                                          • December 12, 2013 at 4:07 am
                                          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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