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BRAF questions
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BRAF questions

› Forums › General Melanoma Community › BRAF questions

  • Post
    • May 10, 2017 at 9:31 pm
    Christine.P
    Participant

      So I just found out that I do have the BRAF mutation after my initial diagnosis/testing in 2015 said I was wild type. Because of this, I never really paid much attention to information about the mutation since I did not have it. Well, now I have all sorts of questions. My doctor is recommending Tak/Mef since I have recently failed ipi/nivo followed by nivo (four new tumors in my leg, hip, and lower back). 

      I tried searching this site for posts related to BRAF and Tak/Mef, but found it hard to wade through all of it. Does anyone have links that I might find useful? I have to admit I've been reading about side effects, and – while I know they are worst case scenarios – I am a little scared. I had few side effects with just nivo (mainly fatigue, headaches, and achy muscles and joints) so I'm hopeful I will also suffer few side effects with the new drugs, but the chances of new cancers, heart failure, etc. is pretty overwhelming. 

      If anyone would care to share their own experience with Taf/Mek, I would love to hear how you fared on the drugs. 

      Many thanks for your continued patience with my questions as my disease has changed and progressed.

    Viewing 7 reply threads
    • Replies
        • May 10, 2017 at 9:44 pm
        ed williams
        Participant

          I have two links for you, the first from ESMO last fall and second is Dr. Weber speaking at the Angeles Clinic seminar last fall. https://www.youtube.com/watch?v=0tL6uLzj6hc https://www.youtube.com/watch?v=ZBcRHFGTyGs  Best Wishes!!!Ed

           

            • May 10, 2017 at 9:56 pm
            Christine.P
            Participant

              Thanks, Ed. I only see one link here – is there another? I appreciate your response!

               

            • May 10, 2017 at 10:06 pm
            Mat
            Participant

              Taf/Mek are miracle drugs (see my posts starting from Aug 2013).  However, I would probably go for a trial first–since these drugs are readily available–unless you have a high tumor burden.  They also work very quickly.  Celeste's website will also have a lot of info on the BRAF inhibitors.

                • May 10, 2017 at 10:17 pm
                Christine.P
                Participant

                  Thanks, Mat. Just to clarify – you recommend a clinical trial before Tak/Mef? My oncologist said the opposite, that we would do Tak/Mef until it didn't work anymore and then we'd have to find a trial. (I have a low tumor burden at the moment.) 

                  • May 11, 2017 at 5:10 pm
                  Mat
                  Participant

                    Correct.  As a BRAF positive patient, I always (now) view BRAF-MEK as my plan B.  It was my only (viable) plan at diagnosis because I had a heavy and aggressive tumor burden.  (I had an initial run on BRAF-MEK of 18 mos until progression and then a second run of 6 mos (after failing pembro) without waiting for progression (switched to ipi/nivo).)  That said, it depends on your personal situation, proximity to trials, whether there is a promising trial, etc.

                    • May 12, 2017 at 1:02 am
                    Christine.P
                    Participant

                      Thanks for the clarification, Mat. So you started with Taf/Mek and are now on ipi/nivo? I started on ipi/nivo and it initially worked well (completel got rid of two tumors) but then, after being on nivo alone for a few months, a new tumor appeared in my calf and then four new tumors appeared in March. My oncologist has said we could continue on nivo until the disease progresses even more and then do Taf/Mek, but she says trials would come after that. Are you currently looking for trials or are you doing well with ipi/nivo? 

                    • May 10, 2017 at 10:38 pm
                    ed williams
                    Participant

                      Sorry about that!!! Here is the link with Weber at the Angeles Clinic symposium.https://www.youtube.com/watch?v=ZBcRHFGTyGs

                      • May 11, 2017 at 11:12 am
                      J.bun
                      Participant

                        Hi Christine – My experience with Taf/Mek has been quite positive… been on it for about 4 months.  I have minor joint pain in my knees (feel it the most when walking on stairs, but has not kept me from usual activities), nausea and fatigue from time-to-time, and skin tags on my shoulders.  I had very severe side effects from other combos.   Like you said, everyone has a different expereince.

                        The plan for me has been to get down the tumors and then go on maintenance with Keytruda… I would prefer to do that versus waiting until progression on the BRAF.  

                        Hope this helps & best wishes as you determine the next treatment!

                          • May 12, 2017 at 12:59 am
                          Christine.P
                          Participant

                            Thank you, J. I appreciate you sharing your experience; it gives me hope that I might luck out with side effects. I wish you well and that the combo helps reduce your tumor load. I am thinking I agree with you about starting Taf/Mek now rather than waiting until I have even more tumors. 

                            Can I ask if you ever did the ipi/nivo combo? I ask because that's what I started witih and my oncologist says she won't do Keytruda now because it's kind of a lateral move. She says that if Taf/Mek doesn't work (or when it stops working), we will have to do a clinical trial. I just wonder if I might need a 2nd opinion when the time comes. 

                            • May 12, 2017 at 12:59 pm
                            J.bun
                            Participant

                              Hi Christine –  I had one dose of the ipi/nivo combo, and then found out I was BRAF positive.  It had been my doctor's plan to start treatment ASAP until we received the BRAF results.  With the one dose, we believe it did activate my immune system (developed pancreatitis, perhaps psuedo-progression), but of course hard to tell.  

                              As I understand, while both ipi/nivo and Keytudra are immunotherapies – they are actually different drugs.  So, I am not sure I agree that it is a lateral move.  I think someone could be responsive to one drug, and not the other.  In fact, I think I wasn't BRAF positive and did not have luck on ipi/nivo, we would have tried Keytruda.

                              My upcoming scan is next week, and fingers crossed I'll continue to have good results.  

                              • May 12, 2017 at 4:55 pm
                              jennunicorn
                              Participant

                                Nivo and Keytruda are basically the same drug, that's why the doc called it a lateral move. If after trying some other options and they don't work, then going back to Keytruda and giving that a try would make sense and some have had success that way, but would not make sense right after being on Nivo which didn't work, since it would be like giving the same drug right after.

                              • May 11, 2017 at 12:41 pm
                              Jahendry12
                              Participant

                                Hi Christine – my husband has been on Taf/Mek since early Jan.  Doc put him on it as they found a 5 cm tumor in his intestine and based on CT, couldn't determine if it was attached to anything else (i.e. colon, etc.).  The reason he was put on it was to shrink the tumor so it could be removed.  The tumor can no longer be seen on the CT.  Surgery scheduled.  As for side effects, he had 1 week of feeling like he had the flu as well as mucle/joint pain once in a while, but other than that, tolerated it well.

                                Hope my answer helps.  Please keep us posted. 

                                  • May 12, 2017 at 12:55 am
                                  Christine.P
                                  Participant

                                    Thank you for sharing your husband's experience. It's good to know that some people tolerate Taf/Mek well. I appreciate your response. 

                                  • May 11, 2017 at 6:10 pm
                                  Scooby123
                                  Participant

                                    Hi Christine,

                                    can I ask did they not test you in 2015 for which gene you was. I cannot remember but read some where that tumours can change gene. Sorry I am wild type but there is a lot who are braf and would have had experience with this treatment. Sending my best wishes for you .

                                    Scooby x

                                     

                                     

                                     

                                     

                                      • May 12, 2017 at 12:50 am
                                      Christine.P
                                      Participant

                                        Hi, Scooby. They did test me in 2015 and i was told I was wild type. I asked my current oncologist (I changed doctors and hospitals in January of 2016) how the results could be different and she said it had to do with the sensitivity of the test. So, I guess she meant that the first test didn't use (or have?" the same capabilities. I don't know if genes can change but it wouldn't surprise me. 

                                        I also asked her if knowing I was BRAF positive in 2015 would have changed my initial treatment (ipi/nivo) and she said no. 

                                        Thank you for your response!

                                      • May 11, 2017 at 6:29 pm
                                      marta010
                                      Participant

                                        Hi Christine – my husband has had a long run (3+ years) on Tafinlar.  Mostly as a single agent, as he had difficulty tolerating it in combo with Mekinist.  He did experience intial tumor reduction with a long period of stability.  He did show progression a year ago and transitioned to Keytruda with Tafinlar as a second line of defense.  He may finally move off the Tafinlar soon if his next scans continue to show a positive response to Keytruda.  The side effects from Tafinlar were fevers – some severe but managed with meds and a reduction in Tafinlar dosage – and joint/muscle pain.  Also had some issues with Uveitis.   It's certainly worth a shot and may give you the time you need to get to the next treatment.  Take care.

                                        Ann

                                          • May 12, 2017 at 12:53 am
                                          Christine.P
                                          Participant

                                            Thank you, Ann. I am hoping for good scans for your husband and that he can move off of Tafinlar soon. 

                                            • May 12, 2017 at 1:07 am
                                            Christine.P
                                            Participant

                                              Hi, Ann – I meant to ask in my last response if your husband ever did the ipi/nivo combo. My oncologist says we won't try Keytruda since, I guess, it's kind of a lateral move from ipi-nivo. I just wonder about others' experiences with the three drugs (ipi, nivo, pembro)

                                              Thank you!

                                               

                                              • May 16, 2017 at 3:02 pm
                                              marta010
                                              Participant

                                                Hi – no, he did not do Ipi/Nivo in combo.  He did Ipi early on in his treatment, after progressing on Zeiboraf.  Nivo was not available at that time so the combo was unavailable.

                                              • May 11, 2017 at 6:37 pm
                                              Bubbles
                                              Participant

                                                Christine, 

                                                Here is a post I put together some time ago that explains BRAF inhibitor basics:

                                                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html  

                                                Prehaps that will help a little…..  c

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