Introduction and introductory thoughts

Call me Steve C.  I trained and practiced as a family physician.  Subsequently ended up in administrative work; I don't practice now.  But I've read more research articles about clinical topics than most family docs.

In early May, my wife had a stroke-like episode and was diagnosed with a 4 cm brain tumor, left parietal lobe.  Grade IV glioma = glioblastoma.  Full excision with clinically excellent post-op status, care at Johns Hopkins (to be highly recommended).

She's on the standard Stupp protocol.  However, we were fortunate enough to get into a trial with nivolumab (Opdivo).

The Opdivo is a bit of an immune shotgun approach.  It is a "checkpoint inhibitor," or PD-1 inhibitor.  It tones down some of the body's (including tumor's) ability to avoid being attacked by the immune system.  The main side effects are thus from the immune system attacking tissues other than the tumor.  That may sound like a shot in the dark for killing tumor cells, but some tumors are fairly susceptible to being attacked by the immune system.  Melanoma, for example, is especially "antigenic," and susceptible to being attacked.  An agent very much like Opdivo eliminated Jimmy Carter's metastatic melanoma.  

I recall sadness on hearing about Jimmy Carter's diagnosis of metastatic melanoma.  I was confident that the next news to be heard was to be of his passing away.  I was floored when the next news instead was that he was cancer-free, because of an Opdivo-like treatment.  I knew then that we've entered a whole new era of cancer treatment.

Glioblastoma isn't quite as antigenic as melanoma, but our oncologist tells us that it's more antigenic than most other tumors.  Opdivo may make a huge difference.

Opdivo is an antibody.  She got the first dose (236 mg) by IV yesterday, with no side effects.  She's scheduled to get another dose every 2 weeks *indefinitely*.  Levels should build up steadily over several months (antibodies have a very long lifespan, months, in the bloodstream).  We met another patient on indefinite Opdivo, who looked great and has had no side effects.  We're hopeful.

I've been reading lots and lots of "preclinical" research reports.  An interesting recurrent theme is that many different agents with modest anti-glioma effects in animals seem to have additive effects with other agents against the tumor cells.  This is seen also in the 60 Minutes report, where polio-treated tumors became extremely sensitive to ordinary chemotherapy.

We conclude that an optimum approach would include a wide range of additive adjunctive strategies, to include diet (ketogenic), exercise, mental health, and cautious use of some supplements--those with a reasonably solid base of research to show some evidence of benefit.
Thus, we're still pursing DIY adjunctive approaches.  Among the more promising non-toxic options includes:
http://www.ncbi.nlm.nih.gov/pubmed/27298767
http://www.ncbi.nlm.nih.gov/pubmed/26637846
http://www.ncbi.nlm.nih.gov/pubmed/10902853

I find Pubmed to be an invaluable resource to help sift through promising avenues and avoiding all the snake oil nostrums and charlatanry that dominate the realm of alternatives for cancer treatment.
It's frustrating that we can't rely on the oncologists' assistance with this.  Physicians, especially oncologists, really can't ethically endorse unproven treatments, and so few potential treatments have been adequately studied in humans.  We''ll offer them the opportunity to veto anything they think is hazardous, but we can't expect them to encourage anything.  It was really striking when when we asked their opinion of medical marijuana, whether for symptom relief or for the laboratory-demonstrated anti-tumor effects, and the response was "we have no opinion on medical marijuana."  It's frustrating, but I do respect them for their strict ethical standards here.  I have no doubt that, were they to sit on the other side of the consultation desk, they'd personally be using a range of such agents.