Saturday 25 June 2016

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.

4 comments:

  1. Hi Steve,

    So sorry you had to seek us out...but very glad you found us. I really hope your wife continues to do well. If you haven't yet stumbled across Stephen's other web site astrocytomaoptions.com it is a magnificent resource too. It contains excellent sections on 'Supplements' and 'Repurposed Drugs'.

    It is exciting to hear that your wife was able to start Nivolumab from the get-go. I'm GBM4 Dx 11/2014 and over the past year have asked several NOs about starting nivolumab off label (sooner versus later). So far all have opined that I wait for a recurrence as the nivolumab may work better at that time, especially if there have been tumor mutations. So I continue on monthly 5/28 temodar cycles (have completed 18 cycles so far), Valcyte, and cocktail medications/supplements and I continue to seek any additional treatments that may be beneficial at this interval of time between newly diagnosed and recurrence. Needless to say, I often feel like a sitting duck.

    Curious if you foresee Optune as part of your wife's treatment post radiation phase?

    Medical marijuana....I'm in Colorado and I too was stunned by the lack of medical information that is able to be ascertained from medical providers or from the retailers/dispensaries. The reality is that it truly is all about recreational use/sales. From my own research into cannabis oil/suppositories I have found a couple of Colorado brands and a Canadian brand that seem decent.

    Well again, welcome to our family- we look forward to your intelligent and helpful posts.

    Best,
    Mike B

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  2. Welcome Steve! I'm glad you found us. We certainly could use more open-minded people trained in medical practice here.

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  3. I am curious about your experience at Hopkins. My husband, has a Grade III Anaplastic Astrocytoma in the midbrain stem, tectal region. The tumor onset was heralded by a week of blazing headaches and double vision and an MRI showed both the tumor and severe hydrocephalus necessitating immediate surgery. Through a relative, we located an excellent surgeon affiliated with Hopkins/Suburban Hospital (in Bethesda) and he and his colleague installed a shunt and performed a biopsy which were successful. However, they felt the tumor was inoperable given its location and after several consults with other doctors, I decided against it. We were then assigned to radiation oncologist and NO in Hopkins SIbley and put on the Stupp protocol. But tests for genetic markers were never performed or discussed, no information about nivolumab or Avasin, or clinical trials. I tried as best as I could to research but it was an uphill battle - because he needed the surgery quickly and I wanted to avoid further disruption to our daughters -one who was starting college and the other high school - I felt very constrained in being able to bring him to other centers. I was also working full time to keep up with bills and pay tuition and sadly, I relied on the doctors more than I should have. But I am also angry - I expected more of Johns Hopkins and I do not understand why no options were made available until I started asking questions, then complaining to Patient Relations and was ignored. In any event, I am curious as to why you felt you received good treatment or if you have any thoughts on why my husband's treatment fell so far short.

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  4. You've had an especially difficult experience, even compared to others who battle this dreadful disease. My heart goes out to you.

    The Hopkins-affiliated hospitals don't necessarily have a lot of integration with Hopkins in Baltimore. The name goes on the building, the contracts with insurers are system-wide, the electronic records are being integrated, but the outlying hospitals aren't research facilities outside of Baltimore.

    Getting cancer treatment at Hopkins is an experience. It's a high-volume center, and it's easy to feel like you could get lost in the shuffle of all the patients filling the waiting areas. But high volume is how they get experienced.

    We were informed that we could have her tumor sent for testing, at our own expense, and we declined. Methylation determination was part of the standard of care, though.

    We weren't offered any non-standard options outside of a clinical trial, and I wouldn't really have expected them to do so.

    For your situation, there *are* trials for progressive/recurrent glioma, perhaps not at your local hospitals, though.
    I personally searched heavily through ClinicalTrials.gov looking for an available, promising trial. Now that we're in one, we wouldn't qualify for any others, so I haven't reviewed things on that site recently.

    He might qualify for a trial for recurrent disease, and if DC is more accessible than Baltimore, perhaps a trial like this:
    https://clinicaltrials.gov/ct2/show/NCT02078648?term=glioma&recr=Recruiting&state1=NA%3AUS%3ADC&age=12&rank=2

    This is a disease where all of us who read end up staring at abysmal uncertainties and grim probabilities.

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