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Hey all – looking for suggestions/experiences with progression after targeted therapy. My husband started Dabrafenib/Trametinib in July 2018, then switched to Encorafenib/Binimetinib in April 2019 due to side effects. All in all he got nearly a year of response which was great, but we were of course hoping he’d be one of the outliers who got more. We got the Pet back this week that shows uptake in several lymph nodes and we’re still waiting on the brain MRI. This time last year he had already failed Ipi/Nivo and was riddled with tumors everywhere, so we’re nervous about where to go from here and how quickly it will all spread again. He also had cyberknife and radiation for a brain met and large tumor in the femur. Our doctor says there aren’t any trials he qualifies for at the moment, so she’s consulting her colleagues about what to do. She’s considering Pembro but is worried since he failed immunotherapy initially. He’s BRAF V600E and from what I’ve read, he’s unlikely to respond to immunotherapy. He also has a PTEN mutation so I’m pushing for treatment of that but not sure what is available. Apparently there’s a breast cancer drug that’s approved for the PTEN mutation that we may be able to get him. The idea is that if you fix the PTEN, he may have a better chance at immunotherapy response.
I’m a research queen at this point (thanks to the articles provided by Bubbles and the oncology conference footage provided by Ed) but when it all comes down to it, it depends on the doctors views and what’s available. So I’m wondering if anyone has had experience with being at this crossroads, or ideas on where to proceed. Thanks to all of you for creating an amazing network for patients and caregivers! I’m on here regularly and feel very much a part of this great community.
Best of luck to each and everyone of you!
Shannon (and Jason)
Hi Shannon, link one is article from MD Anderson (Dr. Tawbi, Dr.Davies) on PTEN loss from ASCO 2018, might be worth looking at 2nd opinion from them at this point. Second idea comes from Dr.Michael Davies talking about how he manages progression with patients that are Braf+, if you go to the 7min 10 sec mark he gets into that specific situation and how he has managed it in the past. I would agree with you when it comes to progression each dr. is a little bit different and a lot depends on the hospital and if they have trials available. Best Wishes!!!! Ed https://meetinglibrary.asco.org/record/165459/abstracthttps://www.youtube.com/watch?time_continue=483&v=4nBOF6xHzc4
Hi Shannon, here is one more from 2019 ASCO, features Dr. Hussein Tawbi of MD Anderson, they get into resistance and some of the ideas out there as well as injectables like T-vec.https://www.youtube.com/watch?v=J-19Vk_kA0k
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