I am sorry to hear about your loss. While it certainly sounds like the patient experience at the Hopkins satellite sites was poor and I do not want to discredit your experience, as an oncologist I feel compelled to correct a few misconceptions in your piece.
> Among other things, Johns Hopkins Medicine relied on its own, rudimentary in-house tests to evaluate the tumor’s pathology rather than FDA-approved procedures that are more granular and would have identified critical biomarkers.
MGMT methylation, the only helpful biomarker for GBM, was developed at Hopkins so they certainly know how to run this test. There are certainly some clinical trials for some targets within GBM(for example IDH) but usually these are only performed in the context of trying to get on a clinical trial. I’m not sure if there were any clinical trials or if your husband would have even been a candidate.
I would have pressed for other emerging treatments … [such as] Avastin
> Avastin does not prolong life in GBM; it just reduces swelling around the cancer and makes the scans look better as a result prolongs PFS. Its not an emerging treatment, its a treatment that is quickly becoming abandoned.
Also, the Optune cap has only been studied upfront in combination with temozolomide. It wouldn’t have made sense to try this when it got approved because he would have already failed temozolomide.
I hope this clears up some misconceptions and relieves your sense that something else should have been done. You did all that you could for your husband and so did Hopkins. This is simply a horrendous disease and we need better treatments. Its best that we support the folks at Hopkins because I think they’re about as likely to cure this disease as anyone.