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Pleomorphic xanthoastrocytoma tumor (Pxa): help
Brain Tumor | Last Active: Dec 9, 2023 | Replies (132)Comment receiving replies
Juliaf, after a couple of successful years on Tafinlar/Mekinist my daughter had a recurrence followed by (another) major operation 2 years ago. After this she was put on Temodar (for the first time). On our own initiative we saw a specialist oncologist in London who suggested trying CBD and Sativex (an active Cannabis derived drug) in parallel. Since there are no officially recognised trials of CBD/S our NO was unable to comment on taking this in parallel, but he did not object. A key thing about the CBD/Sativex treatment is she takes it 3 days on and 3 days off ie it’s not continuous/every day and the oncologist specialist says that this is important. The Temodar plus CBD/Sativex treatment in parallel worked for about 15 months before her latest occurrence found in an MRI in January of this year. It is impossible to say whether the good effect over the 15 months was in whole or in part to the Temodar, and/or whether the Sativex/CBD helped.
After her latest occurrence she is now back on Tafinlar/Mekinist. We understand this is perhaps another ‘first’ ie trying Tafinlar/Mekinist in a “re-challenge” situation. So far it seems to have had a good effect though we have no MRIs at the moment to confirm what is actually happening in her head. But when she started on this 8 weeks ago she could barely move her R arm and now she has about 80% movement restored, so it would appear that trying Tafinlar/Mekinist for a second time is working. To be clear her sequence has been Tafinlar/Mekanist (about 2 years), Temodar (15 months) and Tafinlar/Mekinist (current and ongoing, 2 months so far) and there has been no overlap of these periods. Apparently there is some evidence that going back on Tafinlar/Mekinist after a ‘holiday’ from it, of at least 6 months, can be effective (in my daughter’s case this ‘holiday’ was about 2 years).
Regarding diet, everyone we speak to says eating healthily can help the immune system. My daughter has tried some of the things you mentioned, but this has waned over time, and we are not aware of any magic bullets here.
I hope this helps in some way, ATB David.
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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