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doxiemom
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doxiemom

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      • June 16, 2018 at 8:45 pm
      doxiemom
      Participant

        Wishing you all the best. I just returned from a week of consult appts at MDA. Met with oncologist, Dr. Isabella Glitza, and neurosurgeon, Dr. Sherise Ferguson. Impressed  with both. Will be returning for treatment (IL2) for leptomeningeal disease. 

        • June 16, 2018 at 8:44 pm
        doxiemom
        Participant

          Wishing you all the best. I just returned from a week of consult appts at MDA. Met with oncologist, Dr. Isabella Glitza, and neurosurgeon, Dr. Sherise Ferguson. Impressed  with both. Will be returning for treatment (IL2) for leptomeningeal disease. 

          • May 6, 2018 at 8:26 am
          doxiemom
          Participant

            I also experienced similar side effects with the TAF/MEK combo (fevers/rashes). I was taking it 7 days a week, but had to stop due to the side effects. I am now on a staggered schedule — 4 days on/3 days off — and I’m tolerating it fine …no more fevers/rashes. 

            • May 3, 2018 at 12:09 am
            doxiemom
            Participant

              I’ve been off Keytruda since August. I then went on steroids (dexamethasone) and ended up in a steroid-induced psychosis fog from October to December. Luckily, I emerged from that. I am now back on steroids due to inflammation/nerve damage that has caused neuropathy in my feet and left leg. This has affected my mobility. I have what’s called “foot drop” in my left foot. I’m prone to tripping over it. I’m being treated at Memorial Sloan Kettering in New York, and they are going to fit me with a foot/leg brace, which should help. Anyway, I’ve strayed from the topic…I am planning further discussions with my neurologist next week re the memory issues and anything that can be done to counteract. I will share any news that may be helpful.I wish you would the best. Carrie

              • April 30, 2018 at 6:26 am
              doxiemom
              Participant

                Thanks for sharing. Hope for us all. 

                • April 21, 2018 at 11:18 am
                doxiemom
                Participant

                  Great news! So nice to hear positive reports 🙂

                  • April 21, 2018 at 11:28 am
                  doxiemom
                  Participant

                    One time, we left sushi on the dining room table while leaving the room for a few minutes…Guinness (black-n-tan doxie) jumped up on the chair, onto the table and ate EVERYTHING…except the wasabi and ginger. Smart dog. LOL. 

                    • April 19, 2018 at 9:45 am
                    doxiemom
                    Participant

                      Have had doxies for 25+ years. Mostly senior rescues :-). Wish we could post pics here!

                      • April 13, 2018 at 7:41 am
                      doxiemom
                      Participant

                        P.S. I’ve had fevers and rashes in the past, which necessitated my halting treatment. But I started back on targeted therapy about a month ago (BRAF/MEK: Dabrafenib/Trametinib). This hasn’t resulted in suppressing the disease, so I’m starting another round of radiation tomorrow. 

                        • April 13, 2018 at 7:24 am
                        doxiemom
                        Participant

                          Thanks, Rob. I have been on and off Dexamethasone for several months. Currently, back on. We are in the process of selling our two-story colonial and moving into a home with a first-floor master bedroom and laundry. I can’t wait! The stairs in our house have been killing me. I bought a shower chair a while back. That was a smart move 🙂

                          I’m going on one year since my diagnosis of metastatic melanoma (May 12, 2017). I was Stage 4 at initial diagnosis because tumors in breasts were not considered primary. 

                          it’s been a roller coaster…as I know you can understand. I’ve managed to remain optimistic until recently. The reality has sunk in, I guess. The mobility isssues/physical limitations bring the disease to the forefront, as does the reality of the progression.

                          Thanks for your support!

                           Carrie

                          • April 10, 2018 at 1:12 am
                          doxiemom
                          Participant

                            Thanks for your encouragement, Celeste. The cane I got is pretty cool — all lucite. I ordered it from Fashionable Canes on the internet. 

                            • April 10, 2018 at 12:50 am
                            doxiemom
                            Participant

                              Thank you, Rob for your reply. I am now on TAF/MEK combo 4 days on/3 days off and am hoping this dosage will be tolerable. All the best to you, Carrie

                              • March 17, 2018 at 4:42 am
                              doxiemom
                              Participant

                                I am being treated for leptomeningeal disease by Michael Postow at Sloan Kettering. My metastatic melanoma presented in my breasts (May 2017). I went on Keytruda (immunotherapy) from May until August when MRI showed disease progression to spinal fluid. I am BRAF positive, so was able to go on target therapy combo meds. They were successful in containing the disease, but I couldn’t tolerate the drugs (fevers/rash). I have had radiation and will likely restart meds, but at lower doses. The survival stats you noted are based on pre-immunotherapy treatments. (Melanoma never responded well to chemo.) Best, Carrie 

                                • March 17, 2018 at 4:03 am
                                doxiemom
                                Participant

                                  I tried Zelboraf/Cotellic combo a couple of tones but had to stop due to fevers and rash. It was effective though so doc may put me back on at lower dose or try other targeted therapy. 

                                  • January 9, 2018 at 8:33 pm
                                  doxiemom
                                  Participant

                                    Thanks, Rob. I appreciate your support. And I want to express my condolences to you. I'm very sorry Adriana lost her battle with this terrible disease. Thursday I see my oncologist and neurologist, and I'll have an MRI. I'm hoping for the best…

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