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Clinical Trial for BRAF+

Forums General Melanoma Community Clinical Trial for BRAF+

  • Post
    mmbraddock
    Participant
      Hi!
      I had surgery for a 1B melanoma on 1/5/16 and now found out it had spread to local lymphnode on 1/12/22. I started a clinical trial at Mofffit Cancer Center in Tampa on 1/28/22. It is a combination of Braftovi (75mg) 6 a day and Mektovi (15mg) 6 times a day for 6 months with plans to do surgery after targeted therapy. Has anyone does this treatment plan? I am curious if symptoms increased or decreased over time and success of therapy. I go back in for fist blood work after starting treatment on Wednesday. Still in a bit of a fog re diagnosis.
      Thanks for any feedback.
      MM
    Viewing 7 reply threads
    • Replies
        Bubbles
        Participant
          Many here have taken that combo. Most as Stage IV patients, though some Stage III patients have used it as adjuvant therapy. Since using targeted therapy as NEO-adjuvant is newer, there are likely fewer in that group on this board. However, whoever they may be, perhaps they will chime in soon.

          In the meantime, I can provide you these articles if you are interested:

          As you may already know, targeted therapy, (a BRAF inhibitor combined with a MEK inhibitor) is only effective for BRAF positive melanoma patients. Additionally, there are several different BRAF and MEK inhibitors. Braftovi and Mektovi are the newest. Here is a report on that:

          Articles regarding neoadjuvant therapy –

          Now. If you are a person who likes to go down these rabbit holes, be careful. Make sure the “results” you compare are from the same sorts of patients. Adjuvant folks generally have much better survival rates and response rates than Stage IV patients. Neo-adjuvant folks are probably gonna be a whole other can of worms and that’s not a bad thing, as the data for that method of treatment is looking very promising. Here is a post I put together that explains why it is important to compare apples to apples – as best as we can –

          As for Moffitt – well, the CRU and I go way back! I was in a Phase I nivolumab (Opdivo) trial from 2010 to 2013 as a Stage IV melanoma patient. Our study was divided into those with active disease and those who had had all measurable disease zapped or surgically removed. I fell in the later group. We all did shockingly well!! Remember, this was back in the day. None of today’s immunotherapy or targeted therapy were FDA approved. I am certain the trial, Weber (now at NYU) and the nurses in the unit saved my life. My last treatment for melanoma
          was in June of 2013 and I have remained NED with no further melanoma treatment since.

          May Moffit and this trial do the same for you. I wish you my best. Celeste

            Bubbles
            Participant
              Sorry for the first post. No links made it through on that one. Hopefully they will work for you on the second.

              Best, c

              mmbraddock
              Participant
                Thanks for the information and positive feedback! Glad to hear you are doing well!
              Bubbles
              Participant
                Many here have taken that combo. Most as Stage IV patients, though some Stage III patients have used it as adjuvant therapy. Since using targeted therapy as NEO-adjuvant is newer, there are likely fewer in that group on this board. However, whoever they may be, perhaps they will chime in soon.

                In the meantime, I can provide you these articles if you are interested:

                As you may already know, targeted therapy, (a BRAF inhibitor combined with a MEK inhibitor) is only effective for BRAF positive melanoma patients. Additionally, there are several different BRAF and MEK inhibitors. Braftovi and Mektovi are the newest. Here is a report on that: BRAF/MEK combo’s for melanoma analyzed ~

                Articles regarding neoadjuvant therapy – BRAF/MEK before surgery as well as after is MUCH better, than just AFTER surgery for melanoma!! Plus trial still recruiting resectable stage III/IV melanoma peeps.

                Now. If you are a person who likes to go down these rabbit holes, be careful. Make sure the “results” you compare are from the same sorts of patients. Adjuvant folks generally have much better survival rates and response rates than Stage IV patients. Neo-adjuvant folks are probably gonna be a whole other can of worms and that’s not a bad thing, as the data for that method of treatment is looking very promising. Here is a post I put together that explains why it is important to compare apples to apples – as best as we can – ADJUVANT therapy for melanoma!!!!!!!!!!!!!! State of the science….

                As for Moffitt – well, the CRU and I go way back! I was in a Phase I nivolumab (Opdivo) trial from 2010 to 2013 as a Stage IV melanoma patient. Our study was divided into those with active disease and those who had had all measurable disease zapped or surgically removed. I fell in the later group. We all did shockingly well!! Remember, this was back in the day. None of today’s immunotherapy or targeted therapy were FDA approved. I am certain the trial, Weber (now at NYU) and the nurses in the unit saved my life. My last treatment for melanoma
                was in June of 2013 and I have remained NED with no further melanoma treatment since.

                May Moffit and this trial do the same for you. I wish you my best. Celeste

                Lori0529
                Participant
                  Hello MM

                  I think I may be in a similar (or same) clinical trial at Moffitt.

                  My history:

                  2006 — Melanoma in situ lower right leg
                  2015 — Recurred in right upper thigh — needed Wide Excision — Stage 2B
                  2020 — Surveillance CT scan revealed swollen groin lymph node — confirmed as Melanoma
                  Immunotherapy followed by Superficial Inguinal Lymph Node Dissection
                  Braf+
                  2021 Confirmed Melanoma in right Adrenal Nodule

                  Entered clinical trial:
                  Neo Adjuvant BRAF/MEK for 6 months (2021 July – Dec)
                  Surgery — Laparoscopic Adrenalectomy (2022 January)
                  Randomized Adjuvant treatment (Targeted Therapy or Immunotherapy) depending on the surgical pathology

                  Surgery was 4 weeks ago and am now expecting to begin adjuvant treatment soon.

                  In July and August, I had trouble taking the BRAF/MEK full doses — very sick
                  Dosage was reduced for the remaining months and I felt pretty good — 80% normal I guess
                  Only side effects were joint pain and hair loss/texture change.

                  Daisy2018
                  Participant
                    It sounds like a reasonable good plan.
                    I would do it if I was in your situation.
                    Braftovi/Mektovi should shrink the tumor and then it can be resected.

                    In my opinion, again in my opinion,
                    Only way to stop melanoma forever is immunotherapy not targeted therapy. It works for some folks not for everybody. Otherwise it comes back sooner or later.

                      mmbraddock
                      Participant
                        Yes! It’s sounds like we are in the same trial. My oncologist is Dr. Kushanali and my initial surgeon was Dr. Cruse. I went to Dr. Simonario for 6 years but now with Dr. Glass.

                        Had blood work and two week follow-up today. My liver numbers were crazy high. Had really tough symptoms first week but seemed to adjust. Was scared it was going to be six months of pain!

                        Feel free to email me directly at [email protected]. I live in Tampa.

                        Thanks.
                        MM

                        mmbraddock
                        Participant
                          Thanks for sharing! I think with this trial they do targeted therapy or immunotherapy after the surgery. Whatever it takes, I am all in! I have three teenagers who are having a tough time with all of this…hope you are doing well!
                        soonerjenn14
                        Participant
                          Hi MM,

                          I am currently on Braktovi/Mektovi (again) but I was on the same path as you, although I am in North Carolina (UNC). I had IIIC melanoma that had spread to my lymph nodes, and after immunotherapy stopped working they put me on Braktovi/Mektovi prior to surgery to help reduce things. I will say, my first experience did not go well and after starting/stopping several times they moved me to Tafinlar/Mekinist which I seemed to tolerate better. Surgery went well, they considered me NED but later found out it had already spread to my brain. I’ve since had Cyberknife radiation and am back on Braftovi/Mektovi at a lower dose. I seem to be doing okay so far. Targeted therapy (in my experience) will do its job and give good results if you can tolerate it. I am doing okay on the reduced dose, as someone else said, but do not hesitate to contact your care team if you begin to feel side effects.

                          Wishing you the best!
                          Jenn

                          mmbraddock
                          Participant
                            Hi Jenn,

                            I am sorry to hear that you are undergoing another treatment and the brain met. You sound tough but it’s a lot, for anyone. I am still in a fog phase so thanks for responding. Feeling pretty isolated.

                            I was in a ton of pain first week. Couldn’t walk after 4pm, throwing up all night, so tired but then symptoms improved after a week and mostly just fatigue. I was shocked by liver numbers today. In my head, I don’t want them to lower the dose b/c it will make it less effective but I can’t damage my organs. UGH. How did we end up on this roller coaster?! Stupid genetics.

                            Hang in there Jenn.
                            MM

                              Lori0529
                              Participant
                                MM-

                                All of it can be pretty overwhelming at times — I’ve found the “one day at a time” mindset to be helpful.

                                Started the 6-month trial in July and as hard as some of the days (particularly nights) were —- suddenly it was December, the last dose, and time to schedule surgery.

                                Surgery and recovery often better than I imagine too.

                                Faith, family, friends — you’ll need all of them.

                                Sent you an email — hope you received it.
                                Hoping you respond really well to the treatment and receive lots of encouragement along the way.

                              Sdmotorcop
                              Participant
                                I have been on Mektovi/Braftovi since July 21. I was unable to stomach the full dose (6 and 6) due to some extremely bad nausea. I am currently taking a smaller dose (4 and 4) and am tolerating it ok. The combo has caused my red blood cells and iron levels to crash causing me to be anemic. The low levels caused me to be out of breath and extremely tired. It also caused restless leg syndrome. Out of all of the side effects, the RLS sucks the worst. I go in on Wednesday so they can squeeze a bag of iron into my system.

                                On a better note, I had a CT scan which showed several of my previous hot lymph nodes had vanished (groin, mesentery, upper lung). I have a stubborn one in my lower lung.. it stayed the same size after 4 months. I’ll take that as a win any day.

                                History.
                                9/2004 1.7 mm low back, sentinel node clear

                                7/2017 melanoma in situ left shin

                                4/2019 4.3 mm behind left knee, sentinel node left groin positive

                                5/2019 start Nivo

                                5/2020 stop Nivo due to progression

                                6/2020 start Ipi (3 of 4 doses due to lever toxicity)

                                7/2021 start Mek/Braf combo after progression.

                                Interesting Note..
                                When they ran the first genetic screen, I came back as BRAF negative. Per my oncologist the lab had used semi outdated equipment (Kaiser). My oncologist re-ran my sample using new equipment and I came back as BRAF positive. I’m eternally grateful to him for giving me another avenue to fight this nasty cancer..

                                ed williams
                                Participant
                                  MM Braddock, at the 37:00 min mark of following video that features Dr. Long of Australia, she gets into Neo -adjuvant research they have done in Australia. very interesting stuff!!! https://www.youtube.com/watch?v=LPhuuC4QnTw
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