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LarryFB56

BRAF Mutation

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My biopsy just came back positive for the BRAF mutation. In addition to PD-L1 at 100%.  Anybody have any experience with regards to the BRAF? My oncologist wants to start me off on Keytruda combined with radiation to the node.

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Hey Larry,

my grandma is positive for BRAF mutation as well. She has also PD-L1 at 90 %. We started with dabrafenib and trametinib (Mekinist, Tafinlar), so with the BRAf mutaion. So far it works. How is it going with the Keytruda? Does it work so far? Sorry for my english im not native speaker.

Nice Greetings Kaja 

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Update on Thursday's doctors visit. The biomarker testing came back saying my NSCLC (Adenocarcinoma) cancer has a BRAF V600E mutation. Apparently this is rare; only 2% of NSCLC patients have this mutation. This type is not responsive to chemotherapy or immunotherapy drugs. Basically the chemo was a total waste of money and time, as well as all the side effects I had, some still continuing. It is somewhat responsive to a targeted drug therapy combination dabrafenib and trametinib (Mekinist, Tafinlar), what these drugs are supposed to do is target the specific cancer cells and starve them. Although this is a rare mutation in lung cancer,  it is found in other types, so this is how they have an FDA approved drug available.  My oncologist tells me and most of what I find says this is my only option. I can't find a lot of discussion on here about this mutation/drug combination. Anyone here have experience or information? I'm  working on trying to get a 2nd opinion on this. We've got at least 50 pages of information to read, so it going to take a while to figure this all out. Any input is appreciated. Thanks!

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Hey Shelkay-

I watched the  March 19th Lung Cancer Living Room from the Bonnie J Addario Foundation this past week on YouTube.   It’s two hours but you can skip over the introductions if you’re short on time for the 1 hour presentation by Dr Carbone.  He talks about the future of LC treatment in terms of finding a cure.  

The most exciting report was the future for the mutants!  It looks like the industry is moving toward combination of inhibitors to overcome treatment resistance.   Similar to HIV disease researchers are looking at cocktails instead of mono-therapies to treat LC mutants.  

I don’t think you’re going to find much information out there as you’re definitely diving into trailblazer land.   The fact the your oncologist is looking at treating the cancer at the molecular level instead of an organ sounds very encouraging to me.  

Please keep us posted!  Blaze on!

Michelle

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Hello Larry... Looks like you were the OP. I'm sorry I don't know much at this point about BRAF, but I hope you'll get some info here from others.

Shelkay - Very sorry to hear what you're dealing with and the need to dive into more research. You've got this down; you've proven that!  I hope your oncologist will work diligently with you on this.  Thinking of you!

Thank you, Michelle, for the YouTube Addario Foundation link... It's post like yours that offer so much info to all of us out here. I've bookmarked that site and will view it as I'm interested in all of this treatment / research info.  Thank you!

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Thanks Michelle, I spent the last few days watching The Bonnie J. Addario Lung Cancer Living Room videos & reading in her book. I had never really looked at her stuff before, a lot of good information, but not much at all on the BRAF V600E mutation (pronounced B -Raff). My PET scan is tomorrow, next week is a check by my pulmonologist & an echocardiogram & on 4/9 is back to the oncologist. I also had to see my eye doctor before I'd be able to start the treatment they are recommending. I'm still waiting to get an appointment for my 2nd opinion at Penn Medicine in Philadelphia.

Thank you too Colleen, I was happy to hear you had gotten good news.

 

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I talked with a rep at the Bonnie J. Addario Lung Cancer Foundation on Tuesday, I'm the 1st BRAF V600E patient she has encountered. She is going to do some research for me on this mutation and possible trialsb she gave me the name of someone at Penn Medicine who is familiar with and has treated patients this mutation. She also gave me the name of a nurse navigator I can use. Where I'm currently going does not use nurse navigators & I've felt like I just get pushed from one doctor to the next and have no one person to help guide me along. I'm actually looking forward to my 2nd opinion appointment on Friday. If anyone out there reading this has the BRAF V600E mutation, I'd like to hear from you & learn of your treatment experiences. 

Thanks! 

 

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Hey Shelkay- 

Glad to hear your update.  The nurse navigator is in my opinion one of the critical team members.  I love my nurse & scheduling team, I don’t know how I would juggle any of these appointments without someone in the health system.  

Let us know how the second opinion goes on Friday.  

Michelle

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Shelkay,

I'm glad to hear you've made contact with someone helpful who can be of benefit to you.  I worked with a lung nurse navigator locally and she was fantastic.  I ended up going outside of my community for surgery but she still keeps in touch with me and is working with my pulmonologist.  She has been a great 'hand holder" in guiding me towards information and resources and just made me feel like I wasn't completely alone.  I know you've been steered in different directions, so hope this will help you! My surgeon did not do any biomarker or genetic testing, so no use with the BRAF V600E mutation info you need - I hope you'll get responses from others here. I'm sure that would help to have others to discuss it with.  You hang in there... thinking of you and hope these new connections can steer you in the right directions.

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Hello all! I thought I'd update you all on what's been happening. I started the targeted therapy drugs Tafinlar/Mekinist on 4/14 for my BRAF V600E mutation. Not too many side effect until about 5 weeks in, then I started with fever, aches & headaches. My doctor had me take a break from them for 5 days; I restarted them; symptoms returned a couple days later. I was advised to stay on them unless my temperature got over 103°, tough but I stuck it out. My scan to see how they were working was on 6/10... after just a short time I am NED!! 3 tumors just gone!

I'll be staying on the meds (smaller dosage) for as long as they keep doing their job. Effects are less now & I'm feeling a lot more hopeful about my future. I've been staying away from this and the FB lung cancer group I'm on, trying not to dwell too much on my own cancer & just live the best life I can in spite of it. But I did want to give you all my good news!

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