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BRAF Test Results and trail information a little overwhelming?
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BRAF Test Results and trail information a little overwhelming?

› Forums › General Melanoma Community › BRAF Test Results and trail information a little overwhelming?

  • Post
    • March 9, 2017 at 5:19 pm
    Lddaughter
    Participant

      So my mom  got back that we are BRAF positive and we have a few more scans for her eyes, pelvis and heart. They want to start her on a S1320 trial. Honestly googling it I have a hard time interperating the results, facts and informations posted online. So I decided to stop. Has anyone heard of these? Is the BRAF Positive indicatior a good thing?

      We had a great first meeting with the specialists where they want to work on pain management and then start treatments. The tests are to make sure she qualifies for this trial. I will tell you, a good specialist seem to make a world of difference. 

      Any input would be fantastic. We still have so many questions but we know that is going to be the case for a good while. 

      Thank you!

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    • Replies
        • March 9, 2017 at 5:39 pm
        Mat
        Participant

          Looks like a trial involving intermittent or continuous dosing of BRAF-MEK (Tafinlar and Mekinist), which are FDA-approved medications (you don't need to be on a trial to get the medications).  The issue with BRAF-MEK is that for most patients, the treatment is not durable/long-term.  The purpose of the trial is to see if intermittent or spaced-out dosing makes the treatment more or less durable.  These are great medications (and saved my life at diagnosis), however, they would not be my first choice if my tumor burden was low and I could tolerate immunotherapy–namely the ipi/nivo combination or nivo or pembro (PD-1) alone.  Apologies for using jargon, but you'll find that you need to spend some time on this forum to get up to speed on the jargon and the treatment options as part of your diligence.  Good luck.

            • March 9, 2017 at 6:31 pm
            Lddaughter
            Participant

              No, thank you for using jargon, I am slowly starting to understand it is just so much information at once. Does immunotherapy still work after this inital dose of drugs if it were to be short term?  I know the side effects are dependant on the person but does BRAF-MEK treatment hold worse then the immunotherapy would. I am curious as to what this next set of scans could hold. After our 1st meeting they really identified the Liver as the worst and the adrenal gland but the Kidney mass was a cyst and the lung masses were under a half centimeter so they were not overly concerned. Thank you for your continued reply, I think you are a great source of knowledge on here and the informative posts have been extremely helpful (don't mind me gushing). We are hoping for more information tomorrow at a follow-up appt. 

              • March 9, 2017 at 9:45 pm
              debwray
              Participant

                Hi,

                Braf men targetted drugs work fast if you have that genetic mutation… Problem is they do not work indefinately and stop being effective after some months… Varies between Individuals. So high tumour burden might give a plan of targeted therapy…. Gain control.. Reduce tumour burden… Swap to immunotherapy.. See response. Carry on on if working…Return to Braf mek if immunotherapy failing…. The research is needed to work out beast ways,to use the meds… And speed of response required. IPI nivo combo is toughest regime with worst side effects but.. Plus side higher number of complete or durable responses… Which is what we all want. Liver mets seem to cause extra risk of liver side effects ( yes that's me) and so may force immunotherapy holiday ptr delays whilst these are treated with steroids. 

                Some research shows pembro and nivo sole almost as good as combo if tumours express high pd1 protein… But pd1 tests not reliable enough as yet and seem to vary between labs and diff tumours so not yet mature enough to determine clinical treatment decisions.

                So really a question of weighing up risks and outcomes.. And taking a call on it after guidance from oncologists.. As Braf pos you have more options to chose from.

                Good luck,

                Deb

              • March 9, 2017 at 9:14 pm
              Bubbles
              Participant

                Sorry for what you and your mom are dealing with.  Here's some basic info and links to more that may be helpful to you in finding your way through melanoma land.

                Here is a basic outline about BRAF that I put together a while ago:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

                Basically, we have learned that folks who are BRAF positive can have an amazing response to BRAF inhibitors (BRAFi).  The bad news is that most folks develop resistance to the drugs in about 6-9 months. There are exceptions to this, with some patients being well maintained on them for YEARS!!!  We have also learned that by giving BRAFi with MEKi – patients have fewer side effects and more time before resistance.  Irregular dosing schedules aid in this as well.

                Here is a list of melanoma abreviations I put together once.  (Some of them are a little cheeky, but I find a sense of humor helps as well.):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/melanoma-abbreviations-and-random.html

                (Powers that be that run the spam  blocker limit links to 2 per post…so…see more below…..)

                  • March 9, 2017 at 9:31 pm
                  Bubbles
                  Participant

                    Immunotherapy:

                    Immunotherapy covers a group of drugs that do not fight the tumor directly (as old time chemo does in that it actually works to kill the bad cells in the patient's body) but trigger's the patient's own t cells to get fired up and do the work.  Melanoma is very sneaky and actually turns off the body's ability to recognize the deadly invader and by turning the immune system back on, immunotherapy lets the body see melanoma for what it is and attack it.

                    As such…side effects related to immunotherapy have to do with the patient's own immune system going into overdrive and sometimes attacking itself….like folks who have an autoimmune disease sucj as asthma or arthritis.  So as you might expect…side effects to immunotherapy can be fatigue, joint pain, wheezing, colitis, thyroid problems, etc.  Here is a post I put together about side effects particular to nivo…but it applies to all the drugs:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

                    So what are immunotherapy drugs??

                    Ipi (ipilimumab also called Yervoy)….causes more side effects that anti-PD-1 (see below)…offers about a 15% response rate, but responses can be durable…meaning sustained over years.

                    anti-PD-1:  There are two products – Nivolumab/Opdivo and Pembrolizumab/Keytruda.  Are basically the same in response rates (about 40% in treatment naive patients) and side effects

                    Nivo/ipi combo – best response rate of them all – 50-55%.  Ipi is the bad boy of the side effects in the combo.

                    So….which to choose??  Well, BRAF status is a first bit of knowledge required.  Then, some docs look at tumor burden.  If they feel they have to get it down in a hurry…and the patient is BRAF positive…they often start with BRAF/MEK….then switch to immunotherapy…as it is slower to gain a response…though responses are more durable…before the patient develops resistance.  Here are two melanoma experts discussing how to chooose:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html

                    The latest work is being done on combining BRAFi with immunotherapy simultaneously.  They have had some success but side effects can be pretty complicated.  There are articles on my blog.  Use the search bubble if you are interested.

                    As Mat noted.  BRAF/MEK drugs are FDA approved.  You do not have to be in a trial to get them, if you have Stage IV melanoma…so I'm not sure if you really need to go the trial route or not.  A nivo trial saved my life…but trials are a whole can of worms on their own….so you have to be sure you know what you are signing up for…..though of course you can withdraw from a trial at any time.

                    Hope this helps. Yours, celeste

                  • April 29, 2017 at 2:42 pm
                  COspouse
                  Participant

                    My husband chose Dabrafenib/Trametinib as he's also a Type 1 Diabetic.  The potential side effects of immunotherapy meant they would have had him in ICU to monitor him closely (steroids maybe a no-go since he's diabetic).  He's on the intermittent trial (randomized to 1 week on/3 off/4 on). His tumor load was small (lungs only), initially reduced slightly, now stable.  9 months on trial so far.  Side effects have been fever/chills, so he's been dose-reduced.

                    I feel like we're holding our breath, waiting for progression, but studies have shown some nice long-term data, and he feels pretty decent, all in all.

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