A little background -- my wife (56) had a 95% resection on 3/29 of last year, did the chemo/radiation and the 6 month 5/23 TMZ regimen that was finished last month (had some delays with low platelets along the way). We just got our latest scan and things are basically clear -- and life is pretty normal. Yes -- we are well aware that we have been very fortunate! Upon asking the NO what's next the SOC continued i.e. we just wait, do nothing and do another scan in 2 months. The NO said she wanted to "give your wife's bone marrow a chance to re-charge" (meaning platelets). I mentioned metronomic TMZ and she shot that down saying there was not any evidence to support its use. ( I should note that my wife's tumor was methylated and showed a strong positive for EGFRvIII).
It's frustrating not to be able to take some proactive approach to keep this from coming back. I do have my wife taking curcumin and PSK/Turkey tail but she's not interested in doing anything more that than with regard to supplements.
Are we truly stuck and not able to do anything until the dreaded recurrence happens? As far as I can tell you can't even get involved with a trial unless you have a recurrence. Any thoughts/suggestions are appreciated. Thanks in advance.