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ra23658
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ra23658

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      • October 25, 2021 at 7:43 am
      ra23658
      Participant
        I am down to one small tumor in my lungs after having many in lungs, liver, pancreas and one in brain.  Started treatment about seven months ago Opdivo Yervoy 4 treatments every 4 weeks.  Now I’m on maintenance Opdivo every four weeks for how long I’m not sure.  I had initial tumor flare up and then they started shrinking.
        • March 9, 2021 at 3:38 pm
        ra23658
        Participant
          Quick edit the tumor went from 1.6cm to 2cm not increase of 1.6cm
          • January 16, 2020 at 2:19 pm
          ra23658
          Participant
            Nivo did not work for me. I went from nothing to metastasis to liver, lungs, pancreas, and a tumor at the origin site on my hip. The next step for me was the TAFINLAR® (dabrafenib) capsules, in combination with MEKINIST® (trametinib). After about 30 days on the drug I can hardly feel the spot on my hip anymore. I don’t get scanned until February so that will be the real indicator. I would think that there should be more options in your mothers case as well. Maybe talk to another DR?
            • January 16, 2020 at 1:59 pm
            ra23658
            Participant
              Juan,

              I to am 44 and just started taking the same drugs a month ago at Duke cancer center in NC. I went about 9 days before the side effects really started. Fever, chills, nausea, night sweats, headache. At first they had me stop the dabrafenib but that didn’t work so they had me take a break from the medication for about 4 days. I started again and lasted about 13 days before they returned. I’m not sure what their plan is now, they mentioned lessening the dosage but I’ve also heard on this website that intermittent dosing works pretty good. I’m sure your doctors will try something similar to try and get your body to adjust to the medication. I have not change my diet they actually advised against any big changes in my diet while on the medication.

              • March 13, 2021 at 12:53 pm
              ra23658
              Participant
                Thanks for the response. Sounds pretty similar. Did you have any side effects with Opdivo alone or just the combination?  I did the adjuvant therapy for a year with no side effects on Opdivo but I hear the combo is more toxic.  I’m hoping they’re manageable.
                • March 9, 2021 at 3:09 pm
                ra23658
                Participant
                  Thanks Celeste and Tim for the replies.  That was helpful information.
                  • January 18, 2020 at 2:12 pm
                  ra23658
                  Participant
                    Sorry you’ve probably figured out by now but yes I am BRAF positive so I guess that will not help you. There seem to be some pretty good replies to your post so Best of luck to you and your mom. I’m being treated at Duke Cancer center by Dr April Salama.
                    • December 15, 2019 at 12:29 pm
                    ra23658
                    Participant
                      Thanks for the comment, I am starting the trial at Duke tomorrow. I’ve been put in the group with the Dabrafenib Trametinib combo daily dosing so I’ll report back when I see how it is working.
                      • November 23, 2019 at 1:10 pm
                      ra23658
                      Participant
                        Thanks for your kind reply. That’s fantastic that the tumors are shrinking. I too am thinking that the instruction/simulator training is a good option. It would keep me current if I ever do want to get back into flying. I do want to speak to the oncologist at Duke to see what direction she recommends, and see if the treatment starts working before I would do something like that. I will feel a lot better if I could see that the tumors are shrinking.
                        • November 23, 2019 at 1:02 pm
                        ra23658
                        Participant
                          Thanks for your reply, I should have mentioned that it was tested originally and is BRAF positive. I’m not sure if that means the current tumors are the same but I would think so.
                          • November 23, 2019 at 1:00 pm
                          ra23658
                          Participant
                            Thanks I will look into this.
                            • November 23, 2019 at 12:59 pm
                            ra23658
                            Participant
                              Thanks for your reply, very helpful and good information.
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