Sunday, 15 November 2015
Low Grade and Stable
I've asked this in multiple places and struggled with this for a while. So forgive me if you've seen and already replied either on the CC board or brain trust email. I have oligodendroglioma with 1p/19q deletions, IDH1 mutation, CIC mutation, and TP53 mutation (this one is a mystery). I have residual tumor from 2010 surgery. Did radiation and Temodar in 2011 with no visual reduction. I've been stable for 5 years. Over that time I've experimented with Zinc, Curcumin, PSK, Cimitadine, D3, Metformin, low sugar diet, Melatonin, green tea extract, etc. I know many of these are benign, but I'm feeling like cutting back. First, this is a little pricey to do long term when unsure of benefit. Second, though I like to be proactive, I kind of just want to simplify and stop looking for whatever I can do and just enjoy being stable. Third, when/if recurrence happens I don't want to minimize the benefits of some of these because I took them all this time. As far as other meds, I'm taking Lamictal and Vimpat for my auras. Just looking for any feedback.