HI David, thank you for your response. My son has a BRAF fusion that does not respond to the combo. We started a clinical trial of a second-generation braf inhibitor TAK-580 last week. I have talked to many parents of braf600 and maybe this will help, there is Dr. Levy in colorado childrens who is doing a trial of hydroxychloroquine( i know it sounds strange) added to the combo if it stops working and said she is seeing good results. It sounds like the combo was working for her before it may be another thing to have in your bag. Also selumetinib is now available by prescription in US and the oncologist running my son's trial mentioned that it had better results then mekinist. There is also mek-162 another newer mek inhibitor. Are you in the inhibitor buddies facebook page? It may be useful for you there are parents of kids with these types of mutation in there.

It is interesting about 3/3 days thing, I am going to give it a try although we only use CBD oil. My son also suffers from seizures and the neurologist wants him to try epidiolex, I think for seizures you are supposed to take it every day, wonder how it would work. Because we did temodar and mekinist after radiation and surgery, we do not know which of these held it at bay for 14 months we had good MRIs. We just know the tumor was back 2 months after we stopped Temodar, but every doctor we ask says its a coincidence. He did 5 day on 28 day cycles it was taking a toll on his blood counts and platelets. Did she take it the same way? They had him on a very high dose of 340 mg he is only 110lb. He lost 15 lb while on it. I hope the combo is working for your daughter. Julia

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