From: Andrew Johnson
Date: 2012-04-27 08:42:48
Attachments : www.johnfriedberg.co… VANGUARD CANCER FOUNDATIONKeynote AddressOctober 1, 2011 in Honor of Robert Nagourney, M.D.byJOHN M. FRIEDBERG, M.D. I want to thank Dr. Robert Nagourney, his Office Manager Shari Burt and his entire staff for being asked to speak tonight. I want to thank them for being here at all. I mean on the planet.I was last here in the Los Angeles area a year ago, on October 13, 2010 to be exact. I was here to see Dr. Robert Nagourney. It was a last ditch trip.The day after I got back to my home in Oakland, with my biopsy in his lab, I collapsed and was hospitalized for the next six weeks. I was not expected to live.The title of my story on line is Close Call – A Doctor’s Encounter with Cancer and the Test That Saved His Life.
Everyone has a cancer story but mine is a bit of a humdinger. My kidney tumor was so big that when I e-mailed a photograph of it to a nurse anesthetist and witty friend she immediately e mailed back: “Is it a boy or a girl?” When I last set eyes on Dr Nagourney I was, to use a term of trade, circling the drain.I had been diagnosed with inoperable metastatic kidney cancer at the beginning of July and despite six blood transfusions, 5 procedures to remove fluid from my chest, and despite my faithful use of Sutent or sunitinib for three months, despite the best efforts of Stanford’s Cancer Institute and my oncologist, despite all of that I was closer to death than ever. I couldn’t breathe. I was losing weight and shrinking, one observer said – “like in a Steven King Movie.” The tumor was 4.7 inches and growing. I am a physician myself, but as a neurologist I knew little about cancer and less about the world of oncology. My primary care doctor, Roxanne Fiscella, referred me to Michael Broffman, a cancer counselor at the Pine Street Clinic in San Anselmo in Marin County.It was on the third page of his diligent listing of cancer fighting alternatives that I found the Rational Therapy website listed without fanfare under “labs.”I reviewed the website and it was exactly what it’s called: rational treatment.But when I asked my Stanford Oncologist about what I will hereafter refer to as “The Test” (credit to Ralph Moss, Ph.D. – his book Customized Cancer Treatment 2010 is the best book on the subject) she had a knee jerk response and as a neurologist I’m trained to recognize knee jerks: “Predictive testing is not FDA approved……” and that was all she had to say about it.Other cancer patients like myself have been discouraged by other knee jerks such as “unproven in controlled studies” and quote “it isn’t ready for prime time” unquote which is simply untrue as so many of here tonight can attest.But let me digress for a moment.There is a disease, bacterial endocarditis, in which microbes can destroy a heart valve in days or even hours. When suspected, the first and most famous order any doctor can give is: “culture and sensitivity! Stat! “Bacterial endocarditis is curable if the right antibiotic is chosen based on a bacterial culture and sensitivity test. No one would be dumb enough to start an antibiotic without a predictive test first. And yet from the best I can tell Oncologists choose the drugs they administer today by herd instinct. With maybe a touch of black magic and the financially feasible. Not on what available drug would work best for my cancer or yours.How can this be? First of all, the wisest men and women make mistakes, sometimes over and over. I actually made a humdinger two years ago when I ignored blood in my urine. I actually blamed my seven lb Yorkshire Terrier – Buddy for pushing the sit-ups too aggressively. Each morning as I stepped from the shower he blocked my way, the tug toy in his teeth: we did ten to fifteen reps. He usually won. As of October 7, 2011, Buddy’s sit-up workout is on Youtube.And then sure enough, the problem went away like things do. I think it was Calvin Coolidge who said “If there’s ten problems coming at you down the road, chances are nine will run into a ditch.” I am a real doctor, a board certified neurologist who practiced every day for 30 years. I have had to retire.After receiving my diagnosis in July, I couldn’t quite admit it but at the tender age of 68 I was dying. I still felt young. I still hadn’t made my millions. I still enjoyed what I did as a neurologist. Visit my old “Cybersuite” – it’s like my memory attic now but there’s a good headache questionnaire, a good translation of a book by Giacomo Casanova and a good case against the death penalty and an extensive case against Electroconvulsive Therapy – ECT. Please visit Dr. John’s “Cybersuite.”Back to my stage IV kidney cancer – and as another cancer patient, the writer Christopher Hitchens reminds us, there is no stage V – carries a grim 5% five year survival. Not so good. My being a doctor had nothing to do with being lucky, maybe sensible in choosing my Primary Care physician, Roxanne Fiscella, M.D. She refers those who ask about alternatives in oncology to Michael Broffman, a counselor in Marin County.Mr. Broffman, in turn, included Dr. Nagourney’s lab, Rational Therapeutics under the humble heading “tests.” And Three days after my return to northern California and my emergency admission to the hospital in Oakland, my cell phone rang. It was Dr. Nagourney. He already had results. I was on a morphine drip at the time but there is nothing hazy or distorted in my recollection of his words. He wasn’t effusive but he didn’t hide his satisfaction.“Your cancer is resistant to most of the drugs we tested including the newest forms of therapy but it is sensitive to three drugs. You could take them together in low doses. You won’t lose your hair.”The written report followed:…after “mechanical and enzymatic degradation,” 16 different drugs were tested for the induction of cell death.The conclusion: “Ex Vivo best regimen would be Cisplatin plus Gemcitabine plus Xeloda.”I loved that report. I kept it at my bedside.I read it out loud to callers and waved it at the oncology nurses, the respiratory therapists, even the cleaning staff and of course the busy doctors. I thought it was the best ever lab report and not just because of the good news but the clarity and the personalization. Heck, I loved the choices of type and font.And two weeks after beginning the regimen recommended by the EVA-PCD, (Ex Vivo – Programmed Cell Death) my chest x-ray was clearing dramatically and I was getting better and better and better. Finally, the tumor was surgically removed in its entirety in May and my last PET/CT scan in July was 100% negative for cancer. The Urologist who got the bloody thing out in a strenuous six hour operation, Dr. Robert Yan, gave me a hug.Dr. Gary Cecchi, my oncologist and colleague declared me in remission. He thought I could hold the chemotherapy for now. Cisplatin can cause kidney damage and I’m down to one. Of course I had to call Dr. Nagourney who called me back at the tail end of his long day. He was not as sanguine: “The PET/CT only sees down to a centimeter. Hundreds of thousands of viable cancer cells can persist. Remember, if it comes back you’ll probably die. This isn’t mumblypeg we’re dealing with here.”Dr. N had been right about everything else so far. As his Office Manager Shari Burt put it: “The only thing wrong with him is he’s always right.”So I’m still on chemotherapy. I’ve had no adverse effects other than a neuropathy which has the advantage of allowing my new Yorkie puppy to teethe on my toes. Other than my life, I owe Dr. Nagourney the correct pronunciation of the word apoptosis a beautiful word meaning “falling leaves” utterly ruined by my pronouncing both “p’’s’ as in A POP tosis. Like POP-TOAST!It was the first thing he said to me when we met:“Cancer cells don’t grow too much, they die too little.”He explained how the programmed death of cells is apoptosis and a mutation starts the ball rolling toward cancer by taking out the gene for apoptosis. Add a drug and look for dying leaves. No disrespect intended to Dr. Nagourney and a brave few but “the Test” would seem to be a no brainer.And yet, neither Dr. Nagourney nor the test he does by any name used, most generically CSRA, (chemosensitivity and resistance assay) which, following the lead of the best writer on the subject Ralph w. Moss shall be called simply “The Test” from here on, isn’t so much as indexed in most texts and books.In preparation for my talk this evening, I traveled to San Francisco’s UC Medical School library where I hand searched the indexes. I also searched inside every relevant book on Amazon which allowed a search and it’s a case of what the Germans call “death by silence” or the silent treatment.Actually, it’s worse than that. The Test is sharply attacked.Just one month ago in August, 2011 and before that in 2004 special panels were convened by the trade organization of all academic and private oncologists called ASCO, – the American Society of Clinical Oncologists – for the express purpose of dismissing chemosensitivity and resistance assays as useless.These critics ignore completely the newer, more common sense methods nor do they mention or reference the fine published work by Drs. Nagourney, Weisenthal and others. Over decades! Wouldn’t The Test save money all around? – for the insurers, the drug developers, the practicing doctors and the patients by going for the best drug as determined by the Test? Of course it would but who needs to save money when the National Cancer Institute alone disburses 5 billion dollars a year, mostly hunting the genomic snark and while private charities contribute millions more. The critics call for randomized controlled clinical trials (RCT’s) and dismiss the robust positive correlations in prospective studies.In theory randomized trials sound reasonable until you realize that this isn’t a treatment we’re talking about or a new drug. It’s just a test! It’s a test like a blood culture or a CAT scan.You don’t test a test; e.g. you don’t take some peoples’ temperatures and not others to find out if thermometers save lives. All we ask of a test is that it be accurate. And The Test has proven accurate for both sensitivity and specificity time after time. So who is smart enough to move this forward? We are. The patients. Above all, those whose lives have been saved by the Test. We are the real constituents. Last November, when I was discharged from the hospital I was blinking with the wonder of being alive. I was sure my story would be avidly seized on. After all, I was a doctor whose ravaging kidney cancer melted away because of a combination of drugs which no one would have used had it not been for The Test. You can imagine my astonishment when nobody who I approached with my story – and I mean nobody – not the American Kidney Cancer Association, not the Dr. Oz Show, not two book agents and not even Christopher Hitchens – nobody showed the slightest interest in a doctor plucked from the Big Kahuna. Turned around in two weeks. Cancer clearing like an antibiotic treated pneumonia.(Message over 64 KB, truncated)