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.