From Abracadabra to Zombies
The Skeptic's Dictionary Newsletter
Volume 13 No. 9
It is often said that two-thirds of cancer cases are preventable—one-third by eliminating smoking and the other third by getting more exercise and eating healthier meals. But the evidence associating any particular diet with cancer is discouragingly thin. --George Johnson, The Cancer Chronicles: Unlocking Medicine's Deepest Mystery
New in The Skeptic's Dictionary: earthing.
In memoriam: Vic Stenger.
update: Immune System Quackery.
For many years I've repeated the skeptical mantras: 'the plural of anecdote is not data,' 'anecdotal evidence is unreliable,' and 'anecdotes are useful as a guide to what to study scientifically.' My recent diagnosis of pancreatic neuroendocrine cancer has motivated me to reexamine my view on the value of anecdotal evidence or testimonials.
There aren't a whole lot of us with PNETs, pancreatic neuroendocrine tumors. Many oncologists have little knowledge of NETs. There's a great deal of research being done on breast or prostate cancer and there are some standard forms of treatment available for those and many other types of cancer. There currently is no standard treatment for any kind of neuroendocrine cancer. Neuroendocrine cancer can originate anywhere in the neuroendocrine system: the gut, the pancreas, the thymus, the lungs, the brain. Mine happened to originate in the tail of the pancreas. The tumor in my pancreas, however, is small compared to the tumors seeded there and carried in my bloodstream to my liver. NETs are often slow growing. I was told that I probably had my cancer for several years before I went to my primary care physician with complaints of nausea, loss of appetite, unexplained weight loss, bloatedness, and a hypersensitive olfactory system that made me think the world around me was rotting. I would open the refrigerator and be overwhelmed by the stench of rotting food. I'd walk into a restaurant and want to turn around and walk back out. My wife could smell nothing unusual. And both of us noticed that my voice had changed; it had become raspy.
Late detection--i.e., detection after extensive metastasis--is common with NETS. Many go years being misdiagnosed with things like Crohn’s disease, peptic ulcer disease, or gastritis. By the time my cancer was detected (by a CT scan), my liver was riddled with tumors, too many to surgically remove. By the time my pancreatic tumor was detected, it had spread its network of varices over my spleen, colon, and stomach. A colonoscopy failed to find any growths inside the colon and my lack of symptoms after a few months of chemotherapy tell me that the cancer has not infected the inside of my spleen or stomach to a serious degree, if at all.
Ideally, I suppose, I would be receiving treatment based on many double-blind, randomized, control-group studies of people with PNETs that have metastasized to the liver. In each study, we'd have at least 25 subjects in each group, the experimental and the control. The experimental group would get some drug that looks promising (based, perhaps, on testimonials) and the control group would get a placebo. The experiments might go on for years while scientists tinkered with the dosages and weeded out the drugs that had a high rate of serious side effects or low rate of success in slowing tumor growth. (Success used to be measured by length of survival, but these days success is often measured by progression-free survival. We don't expect to have our cancers cured; we aim at controlling the growth of the tumors and maintaining a decent quality of life.) After years of experimentation, in an ideal world, one or two treatments would be found that are highly effective and have minimal adverse side effects on a large percentage of patients.
I think anyone reading this knows that this is not going to happen. It's obviously unethical, but see note. What is happening, then? Let me start at the end. The drugs I am taking for my cancer were not approved by the FDA or any other formal organization for pancreatic neuroendocrine cancer. One drug--capecitebine--has been approved for Dukes' stage C colon cancer. The other--temozolomide--has been approved for glioblastoma multiforme. There has never been, and probably never will be, an RCT pitting CAPTEM (the combo treatment of capecitebine and temozolomide) against a placebo. There is a randomized clinical trial going on that pits CAPTEM against treatment with temozolomide only. There was a phase II clinical trial of CAPTEM with no control group on a small set (28) of NET patients (the Fine study) that reported very promising results. Stanford University is currently recruiting for a non-randomized, no control group (single arm) phase II clinical trial using CAPTEM and Bevacizumab for Metastatic or Unresectable Pancreatic Neuroendocrine Tumors. I was hoping to get into the Stanford clinical trial, but the principal investigator, Dr. Pamela Kunz, advised me that the bevacizumab might be harmful to me because of the many varices issuing from my pancreas to my spleen, colon, and stomach. I had consulted Dr. Kunz because I was not convinced that the chemotherapy my oncologist wanted me to undergo was right for me. PNETs are classified as grade I, II, or III. My oncologist wasn't sure what grade my tumors are, but one need not spend too much time at Google University to discover that you must know the grade of the tumor before choosing the treatment. I went to Stanford and Dr. Kunz for a second opinion and she told me that the recommended treatment for me (with a grade II PNET) would not be cisplatin and etoposide (as recommended by my oncologist) but CAPTEM. My oncologist agreed to treat me with CAPTEM, though he told me that he didn't think it would work any better than cisplatin/etoposide. We'll never know.
Why would Dr. Kunz recommend CAPTEM and why would I agree to her recommendation? Neither of us could point to large RCT studies. She's one of the few oncologists in the U.S. who specializes in NETs. I trusted her more than I trusted my oncologist. I had read the Fine study and compared to what else was known about treatments for PNETs, it stood out as hopeful and promising despite its being small and having no control group. In a way, the Fine study was like a bunch of anecdotes. I can now add my own anecdote to the mix. I am in my fourth round of CAPTEM. Each round lasts 14 days, then I am off all chemo for 14 days. A CT scan taken about two-thirds of the way through my third round showed that the pancreatic tumor has shrunk about 30% and the largest tumor in my liver had shrunk about 38%. All my symptoms are gone and except for an increase in the volume of the ringing in my ears, I have had no side effects. (Note: one of the common side effects of NETs and chemo is nausea. I take no anti-nausea pills while on capecitebine--which I take with breakfast and dinner--or when off therapy. I take 8 mg of Zofran (ondansetron) 1/2 hour before taking 400 mg of temozolomide [which I take on an empty stomach before I go to bed]. I have no nausea while following this regimen. My appetite is good and I've gained back the seven pounds I lost during the first two rounds of chemo. I haven't gained back the twenty pounds I lost during the first five months of this year, but I'm not looking for them and wish them well wherever they are.)
In recent weeks, I have been following the postings of various PNET patients on a website. Some of those who post have been on CAPTEM. The reports are generally positive (i.e., tumor shrinkage and slowing the growth of the cancer), though there are some reports that indicate CAPTEM hasn't worked. Other common treatments include Sandostatin, Affinitor, and Sunitab. Some have had various kinds of surgeries and nuclear medicine treatments. In every case, the bulk of the data is in the form of anecdotes. I am finding these anecdotes very useful. I realize that it might not be the CAPTEM that has shrunk my tumors or removed my symptoms. It could be all those prayers everybody is saying for me or it could just be a fluke. I might have gone into semi-remission by chance just as I started the CAPTEM. In any case, these anecdotes give me some information that will prove useful when the CAPTEM stops working (or people quit praying for me) and I discuss the next phase of my treatment with Dr. Kunz and my new oncologist.
note: Clinical trials of NET patients do sometimes use control groups getting a placebo. For example, clinical trial NCT01658436 "is a Phase II study in 2 stages, evaluating BEZ235 plus best supportive care (BSC) versus placebo plus BSC in patients with advanced pancreatic neuroendocrine tumors (pNET) after failure of mTOR inhibitor therapy." On the other hand, I couldn't imagine anyone newly diagnosed with PNET joining a clinical trial where he might be given nothing beneficial for his cancer. And I couldn't imagine a researcher who could, in good conscience, give a placebo to a newly diagnosed cancer patient when there are treatments available that might be beneficial. The exception would be crossover studies where those in the placebo group get the experimental drug at some point in the study. This may benefit the cancer patient but it can confound the data.
addendum: There have been several Food and Drug Administration (FDA) approved drugs for NETS. In 1982, streptozocin was approved to treat pancreatic neuroendocrine tumors. Although the data support the antitumor activity of streptozocin based regimens, this approach has been limited because of a cumbersome administration schedule and toxicity profile.* On May 20, 2011, the FDA approved sunitinib (Sutent® Capsules, made by Pfizer, Inc.) for the treatment of progressive well-differentiated pancreatic neuroendocrine tumors in patients with unresectable, locally advanced, or metastatic disease.* On May 5, 2011, the FDA approved everolimus (Afinitor® Tablets, made by Novartis Pharmaceuticals Corporation) for the treatment of progressive neuroendocrine tumors of pancreatic origin in patients with unresectable, locally advanced or metastatic disease.* Recently, the FDA granted priority review of Ipsen’s supplemental New Drug Application (sNDA) for Somatuline Depot (lanreotide) 120mg injection in the treatment of gastroenteropancreatic neuroendocrine tumors (GEP-NETs).* In 1988 the FDA approved octreotide, one of the most common drugs given to NET patients. "Octreotide is used in cancer treatment to control some symptoms of carcinoid syndrome (such as flushing, wheezing, and diarrhea) and to treat graft-versus-host disease. It is also used to treat diarrhea caused by chemotherapy, radiation, and AIDS."* Finally, the combination of temozolomide and capecitabine has been reported to have an objective response rate of 70% (Strosberg et al., 2011).
Alternatives to Science-Based Cancer Cures
There aren't any. In fact, there aren't many science-based cancer cures. Surgery can cure some cancers, but most of us with cancer will have to live with it until we die, especially if our cancer has metastasized. Over the years, I've written about a few so-called alternative cures for cancer: There's the “liver flush” technique, the alkaline diet, the fetal stem cells cure, the Gerson treatment with coffee enemas and carrot juice, and the Norwegian fjord kelp protocol. Then there are those that promise cures by “stimulating natural immunity through resonance harmony” or some variant of radionics. Finally, there are those that promise the end of cancer by some type of “natural cure.” I repeat: there are no alternative-medicine cancer cures. Not even cannabis.
Alternatives to Science-Based Cancer Treatments
Many of us with cancer aren't looking for a cure. We're looking for treatments that will alleviate our symptoms, slow down the growth of our tumors, and allow us to live a good, if somewhat shortened, life. There are a number of science-based treatments that fit the bill. I know that CAPTEM is not a cure for my nonfunctional well-differentiated pancreatic neuroendocrine cancer with inoperable metastasis to the liver.
While there are no altmed cures for cancer, there are many so-called altmed regimens and treatments offered to prevent cancer, slow it down, or alleviate pain and other symptoms. One I had not heard of until I attended a conference recently for NET patients in Charlotte, North Carolina, is black raspberry powder. One of the recognized experts on NETs is Dr. Eugene Woltering. He spoke at the conference I attended and mentioned black raspberry powder as something one might try for diarrhea. Last year, Dr. Woltering spoke at the Berry Health Benefits Symposium, also held in Charlotte.
Woltering and his colleagues at LSU have recently requested funding for a phase III clinical trial of a black raspberry extract in patients with neuroendocrine tumors. The trial would study black raspberry extract alone and in combination with more conventional drugs in midgut neuroendocrine tumor patients, and also seek to understand if black raspberries in some form are a viable treatment option for patients whose tumor cells exhibit reduced angiogenesis in the in vitro assay.
There are at least eleven clinical trials going on involving freeze-dried black raspberry powder. Black raspberries are not the same as blackberries. They are grown mostly on the west coast in Oregon. They have a high concentration of phytonutrients and antioxidants, leading some folks to think they might have significant health benefits. So far it looks good for fighting cancer in the petri dish and in rats. But then, many things kill cancer cells in vitro and in rodents but have no value for humans. Joe Mercola should remember this the next time he promotes a "natural" cure based on petri dish and rat studies.
There are many nonsensical, false, or misleading claims about cancer. Johns Hopkins has posted a few of these myths and hoaxes. The list includes wrongheaded notions about cancer and the immune system, nutritional deficiencies, supplements, alkalinity, chemotherapy, and surgery.