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Braftovi/Mektovi

› Forums › General Melanoma Community › Braftovi/Mektovi

  • Post
    • July 19, 2018 at 4:46 pm
    VinceMart
    Participant

      Hi all,

      I am currently Stage IV wiith liver, lung and intestinal mets. Just wanted to post for anyone considering the new BRAF/MEK combo.  I started Braftovi/ Mektovi on July 14th.  So far, not too bad.  Headaches that come and go.  I am also receiving Keytruda infusions every 3 weeks.  Will keep updating for anyone considering this treatment.  Hoping this is a treatment that will help many of us reach that NED status.  Fingers crossed.

      Have a great day everyone!

      Vince

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    • Replies
        • July 19, 2018 at 4:56 pm
        sister of patient
        Participant

          Fingers, toes and everything else crossed for you Vince. Please keep updating to let us know how it's going!!!

          Best wishes!!

          Barb

            • July 19, 2018 at 6:06 pm
            Bubbles
            Participant

              Amen!!!  Hang tough, Vince!

              • July 23, 2018 at 7:37 pm
              VinceMart
              Participant

                Thanks Bubbles!

                • July 21, 2018 at 3:46 pm
                Joyhitch
                Participant

                  Vince – I just started the Braftovi/Mektovi combination a week ago. I’m stage 4 with mets to liver, bone, brain, lung, as well as some visible in-transits on my neck. So far I have been feeling fine. I did not tolerate the other versions of the BRAF/MEK inhibitors. I am noticing that the lesions on my neck are already starting to get smaller. I’m feeling very hopeful. 

                  • July 23, 2018 at 7:36 pm
                  VinceMart
                  Participant

                    Hi Joyhitch

                    Glad to hear you are tolerating this combo well also.  I also did not tolerate the other versions of BRAF/MEK well.  I am also noticing the lump in my upper arm near my incision scar getting smaller.  It was getting larger while I was on the other MEK treatment, so this is encouraging.  Hope to conitnue to share success stories with you in the future.  Keep in touch.  It would be great if this combo can be another useful tool for many of us here who are struggling to find a successful treatment.  Wishing you continued good health!

                    • August 2, 2018 at 7:11 pm
                    Keith617
                    Participant

                      Joy and Vince,

                      Thank you for posting! So glad to have found this thread and glad to hear you are seeing results! My doctor asked me to consider this combo. I failed out of Mekinist/Tafinlar with Pancreatitis week 1. Then Zelboraf/Cotellic since March last year. Can't do the full dose of Cotellic without Serous Retinopathy. It has kept the body free of cancer, decreased size of the latest brain tumor but the brain just won't stabilize! Just (a month ago, still recovering!) underwent an emergency shunt install as we can't get the brain mets or LMD to just stay stable after over a year. I've lost a lot of quality of life, can barely walk from Prednisone destroying my knees. And Z/C causes Synovitis that we can't control – it appears I'm not handling the Biologic that gives me some relief. I am weak due to inactivity and I am really considering trying this combo in hopes of a better quality of life. I'm deciding by 8/27. I am so thrilled to hear you guys have seen shrinking tumors and wish you the best! I will be following this thread for sure and update on my situation. I did Keytruda before BRAF and it was where I saw the most success. I just couldn't handle the treatment! We did mix in some radiation to activate the antigens on Keytruda, but this is a practice not all Oncologists believe in or try. They definitely know it at Dana-Farber. I did 5 days radiation to a large soft-tissue tumor and it vanished.

                      • August 6, 2018 at 3:04 pm
                      VinceMart
                      Participant

                        Hi Keith,

                        I have only been on the Braftovi/Mektovi for 4 weeks, but my tumor in my arm did measure smaller at my appt. last week and I am feeling more like myself than I have in months.  I have a PET Scan on in a few weeks and will update what the progress is then.  I can only say, look into it and it was worth a try for me.  Hopefully, it will be for you too. 

                        Hang in there!

                        Vince

                        • August 17, 2018 at 1:50 am
                        Keith617
                        Participant

                          That's great to hear, Vince! And encouraging! I just took first full dose tonight. Hit complete toxicity on Zelboraf n Cotellic.

                          • August 12, 2018 at 6:39 pm
                          Messalina
                          Participant

                            Hello! 

                            Please, maybe someone can

                            help me. My sister has melanoma, she used Dabrafenib (Tafinlar®) + Trametinib (Mekinist®) and she has good result, but now the drugs stopped acting and the disease began to actively progress. We read that there were new medicines Braftovi/Mektovi, which are currently sold only in America. Tell me, will there be any new medicines to help if the Dabrafenib (Tafinlar®) + Trametinib (Mekinist®) have stopped, does it make sense to try? Is it possible to somehow buy these medicines if we live in Belarus and can you give us their cost? Thank you!

                            • August 12, 2018 at 11:38 pm
                            ed williams
                            Participant

                              I would think it will be approved soon, here is a link about European approval. https://www.onclive.com/web-exclusives/binimetinibencorafenib-combo-approaches-european-approval-for-braf-melanoma

                              • August 17, 2018 at 1:47 am
                              Keith617
                              Participant

                                I did Zelboraf and Cotellic with great sucess. Worked for me foe about a year before toxicity. Maybe see if these are available? They are a bit older of drugs, but worked better for me than Tafinlar and Mekinist. I just started Braftovi and Mektovi today.

                                • August 17, 2018 at 5:13 am
                                Messalina
                                Participant

                                  Thank you for your answer, we want buy Braftovi and Mektovi and we want to try them. Please tell me how this combination will work. Can you write more information about these preporaty? My mail [email protected] I will really wait for your reply! Nobody knows in our country anything about medicines and can not tell.

                                  • August 17, 2018 at 5:14 am
                                  Messalina
                                  Participant

                                    Thank you for your answer, we want buy Braftovi and Mektovi and we want to try them. Please tell me how this combination will work. Can you write more information about these preporaty? My mail [email protected] I will really wait for your reply! Nobody knows in our country anything about medicines and can not tell.

                                    • July 23, 2018 at 7:38 pm
                                    VinceMart
                                    Participant

                                      Thank you Barb, best wishes for good health to your sister also!

                                    • August 22, 2018 at 6:02 pm
                                    VinceMart
                                    Participant

                                      Wanted to provide an update after my PET/CT on Monday. 

                                      As I mentioned before I was also receiving infusions(Keytruda) every 3 weeks while taking the target therapy. When I first started the tumor on my arm was shrinking. However it started growing again and it’s about 1 cm now. Also the 3 liver mets almost doubled in size. I guess the one good thing is that it did not show any lung or intestinal mets. So hopefully those are clear. They did see a hot spot on a lymph node near my abdomen.  We are going to continue with the target therapy but stop the infusions. I will update this post after my next appt to see if anything changes  

                                      This wasn’t the news I was hoping for but I’m still hopeful that something will work if not these particular meds. 

                                      Bless you all and stay strong. You are not alone. 

                                      My prayers to all of you. 

                                      Vince

                                      • September 28, 2018 at 5:25 pm
                                      Keith617
                                      Participant

                                        My update – a little after five weeks in and I claim to be thriving, because I feel better than I have in a couple years. MRI of brain and spine show stability, but no changes to existing tumors. Spinal fluid is stable on the shunt. It is the first therapy I've been able to tolerate at full dose.

                                        This therapy continues to contribute to the debilitating synovitis that first showed as swelling and was considered "a normal side effect" from braf inhibitors of the past. Regardless of being on treatment for R/A, icing, hot pads, and wearing compression, it gets worse each day. I do see the near-constant dull headaches and some mornings wake up feeling hungover with no desire to do anything but stay in bed. I know the headaches aren't related to the brain thanks to the recent images. But for anyone who's had endless brain tumors like I have, any headache is scary. Overall though, I'm way more functional and experience way less side effects than anything else I've done. Just hope it's working.

                                          • April 21, 2019 at 9:49 pm
                                          Keith617
                                          Participant

                                            Well seven months in I've got mixed results. No evidence of disease in body. But MRI shows a huge cloud of contrast along the shunt in the ventricle. They just have no explanation for what the mri shows. Told they believe it is melanoma related. So beginning truBeam radiation and discussing immunotherapy options.

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