The National Cancer Institute at the NIH just told me my wife is ineligible for any trial there. Ever. Their reason was not that there was evidence of active brain mets, or that we had to wait three months from the last brain met treatment. It was that my wife's brain tumors bled (requiring the craniotomy and Cyberknife) and she suffered a seizure as a result of the brain irritation from the Cyberknife. "The seizures make her ineligible".
The National Cancer Institute at the NIH just told me my wife is ineligible for any trial there. Ever. Their reason was not that there was evidence of active brain mets, or that we had to wait three months from the last brain met treatment. It was that my wife's brain tumors bled (requiring the craniotomy and Cyberknife) and she suffered a seizure as a result of the brain irritation from the Cyberknife. "The seizures make her ineligible".
I think we all know how terrible it is to have this disease and it's metastatic. It's worse if you have brain mets because you are excluded from any clinical trials that I can find, unless you are BRAF positive (which my wife is not). So the hope is that your brain is at least free of disease for long enough after a particular brain met treatment that you can slide into a clinical trial – like the adaptive cell therapy and andeslukin combo.
If anyone knows of any clinical trial that does not have brain met exclusions or this new "no seizure clause" I'd love to know about it.
And for anyone getting Cyberknife or any other form of brain radiation, be sure to get on sufficient anti-seizure meds (not just steroids) prior to and well after the treatment. Because then at least if you are clear for a period of time you at least have a shot at an NCI clinical trial.
We are of course devastated by this news.
