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Braftovi/Mektovi, updates anyone???
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Braftovi/Mektovi, updates anyone???

› Forums › General Melanoma Community › Braftovi/Mektovi, updates anyone???

  • Post
    • September 27, 2018 at 6:13 pm
    VinceMart
    Participant

      Hi fellow fighters,

      I was wondering if anyone has any updates as to how they are doing on Braftovi/Mektovi.  I know there are only a few of us currently on this treatment.  I have been on it since early July and have a scan in a few weeks, however the lump in my arm has not decreased in size at all and I now have another.  I haven't seen anyone new mention they have tried this and am looking for some feedback is possible.

      Take care everyone,

      Vince

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    • Replies
        • September 28, 2018 at 12:09 am
        MelanomaMike
        Participant
          Hi Vince, i do not take it but i see its relatively new??? Hmm, pill form as well? How are you adjusting to it? Im inbetween treatments “temporarly” so, please elaborate..Mike
            • September 28, 2018 at 11:09 am
            VinceMart
            Participant

              Hi Mike,

              BraftoviMektovi is 12 pills a day, but I have had no side effects at all.  Actually feel great!  Now is it working, no clue?  My scan last time showed my liver mets increasing but no new mets.  My lesion in my arm stayed the same size, however now I have another that was not there before. I could not tolerate the side effects of TAF/MEK and failed Keytruda, so Braftovi/Mektovi was worth a try.  I know JoyHitch was also on it at the same time as me and was having some side effects, but I have not seen any posts from her lately.  Not many people seem to be taking it.  Might be worth considering for you.  I guess I will see soon if it is working or not, my feeling is it is not since I have a new lesion in my arm.

              Stay strong!

              Vince

              • October 10, 2018 at 12:47 pm
              Joyhitch
              Participant

                Hi. I have not been on here for a while. I have been on and off of the Braftovi/Mektovi combination since early July. I have had several adverse reactions – fever, rash, nausea, vomiting. It was determined that the Braftovi was causing it for me. The dose was decreased several times, but I was unable to tolerate even the lowest dose. I have been on Mektovi alone for several weeks and doing okay with that. I had recent scans that showed tumors shrinking in my brain, liver, and lung, as well as no new tumors. The visible tumors on my neck – some are smaller and some are larger, not sure why they did not respond as well. My oncologist wants to keep me on Mektovi alone for now and do scans again in 2 months. There is concern that it may not be helping my bone mets, as I have started having pain in my hips and ribs. The oncologist told me they could do radiation treatments to certain areas for pain relief, but I’m not ready to sign up for that yet. I did not have a great experience with neck radiation last year, so I’m apprehensive about radiation. 

                If this his treatment does not continue to work, I will either be looking at chemotherapy or a clinical trial somewhere. 

                I am stage 4 with primary scalp, mets in liver, brain, lung, and bones. I started this in 2014 and have been battling metastasis since mid 2017  

                Keep fighting, Joy

              • September 28, 2018 at 1:03 am
              triciad
              Participant

                Hi Vince,

                I, too, have been on it since the end of June.  I was stable when I went on it. Previously, I was on Tafinlar and Mekenist for over 2 years.  It was working everywhere except my brain. I had 4 Gamma Knifes last year.  Everything looks good so far with my scans. Have you tried Tafinlar and Mekinist?  That totally saved my life.  I had it everywhere…bones, lungs, liver, etc.  Within a week of my first dose, the pain from the bone mets (severe!) disappeared.  So, if you haven't tried it already…it's worth a try.  I wish you all the best, and hope you will have success soon!

                Blessings,

                Tricia

                P.S.  How about all of those pills every day with the BRAF Toni and mektovi…gross!    But if it works…worth it!

                  • September 28, 2018 at 5:24 am
                  MelanomaMike
                  Participant
                    Hi, like i asked, hows the side effects if any?
                    • September 28, 2018 at 11:15 am
                    VinceMart
                    Participant

                      Hi Tricia,

                      Yes those 12 pills a day are alot, but if it is working then well worth it.  I did try TAF/MEK in March and could not tolerate side effects  (blood pressure dropping, severe rash, fevers, ER visits), so my Onc took me off.  I have several lesions in my liver and 2 in the upper arm scar area.  I hope my scan shows some reduction in my liver and then maybe they can do something else with the arm. I am so glad you are doing well on Braftovi/ Mektovi.  I thought when it was approved I would see alot more posts on the site with people taking it  since the side effects are lower than other combos, but looks like just a few of us.

                      Continued health Tricia,

                      Vince

                    • September 28, 2018 at 2:32 pm
                    ed williams
                    Participant

                      Hi Vince, there are a few others who are on this new targeted therapy combination on two of the facebook groups I belong to. I don't have the braf + mutation so I don't follow the topic as closely as I do other options, that being said if you want to join these groups on face book and seek out other members there of their experiences feel free. One is called "Melahomies United" and the other is "Melanoma stage 4 support group' Here is a link to one of the groups. You have to ask to join so that we keep out Anon's and marketing people.https://www.facebook.com/groups/melahomiesunited/

                        • September 28, 2018 at 2:34 pm
                        ed williams
                        Participant

                          I think the link I gave you will probably be blocked until you join since it is a closed group. There are around 2500 members.

                          • September 28, 2018 at 6:27 pm
                          VinceMart
                          Participant

                            Hey Ed,

                            Thanks for the info, I will ask to join the facebook group to which you sent the link.  Anyplace we can go for info and support is great, I really appreciate you passing this along to me.  You always provide helpful links and I read alot of the stuff you post, keep it coming Ed!

                            Vince

                            • September 28, 2018 at 6:28 pm
                            VinceMart
                            Participant

                              Hey Ed,

                              Thanks for the info, I will ask to join the facebook group to which you sent the link.  Anyplace we can go for info and support is great, I really appreciate you passing this along to me.  You always provide helpful links and I read alot of the stuff you post, keep it coming Ed!

                              Vince

                              • September 28, 2018 at 7:45 pm
                              MelanomaMike
                              Participant
                                So your telling me theres a “Land of No Anonymouses?” A Metropolis of folks with Names? Gunna check out FaceBook, iv been on FB since like 1950 it seems, have my own club called “Sons And Daughters Of Vietnam Vets” were about 1500 deep..thanx Ed for the lead.
                                • September 28, 2018 at 10:16 pm
                                ed williams
                                Participant

                                  Hi Mike, a friend that was fighting the beast send my name in to join, I thought I would give it a go for a while. The stage 4 group has a bit of a religious under tone from time to time but the melanomies are a bit of a wild bunch of don't give a shit cast of characters. They don't suffer fools or scams or fake pass port links!!! I think your cat might help you get into the stage 4 group, they don't do FBI back ground checks or anything like that, you just have to answer a couple of skill testing questions to join!!!

                                  • September 28, 2018 at 11:52 pm
                                  MelanomaMike
                                  Participant
                                    Hi Ed, i signed up for both so, well see if im Melanoma enough for them, i like the No FBI checks, The FBI Explicitly Does Not, or Any other case reach a Conclusion, Period!Period.. Lol…
                                  • October 5, 2018 at 11:20 pm
                                  Prd10
                                  Participant

                                    Hi Vince,

                                    ive been on it about a week with no side effects.  I had done Taf/Mel for a year and struggled w the fevers but have had no problems on this.  I've got a small rash on the back of my neck which is no big deal.  The amount of pills is crazy.  Just getting them down makes me nauseous.  I'm just using this as a bridge to finish ipi/Nivo so I'm hoping I can get a good month out of them bc I have to deal with leptomeningeal disease. My dr did say it was being tolerated well by his patients.  Take care -Caitlin 

                                      • July 11, 2019 at 4:04 pm
                                      CarrieG
                                      Participant
                                        Hello everyone. I hope those that have previously responded to this post are doing well.
                                        I’d like to share my experiences with treatment for my stage 4 melanoma diagnosis..
                                        I have Mets to my lungs, neck, and liver. No primary site ever identified.

                                        I was started on immunotherapy in July 2018 (tanfinlar and mekinist combo).
                                        I had side effects ..fever, elevated liver enzymes, skin sensitivity, raise in b/p, some facial swelling. These meds were stopped in April 2019 due to side effects effecting the course of treatment.
                                        Mektovi and Braftovi were started the same month and are my current meds. Again some side effects mostly fevers causing lowering off the dose. Treatment may change for me in the near future as my recent ct scan shows a few new tumor growths in my lungs and liver though some shrinkage of tumors in my liver and stable tumors in my lungs. A bit confusing to gauge what is considered success with meds.
                                        Next: Possibly a clinical trial with Spartalizumab…immunotherapy. Is anyone familiar with this? Has anyone tried chemotherapy?
                                        I hope sharing this information may be is some help.
                                        I try to remain positive that there are new drugs and combinations available to us.

                                        Carrie

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