A Rare Genetic Mutation Leads to Cancer. The Fix May Already Be in the Drugstore.

May 17, 2019 · 42 comments
Lori B (Albuquerque)
Stop worrying about big heads! It is only ONE of the clinical criteria for PTEN mutations. Large heads are not rare, but many of the others are, like a rare type of thyroid cancer, very specific growths on the skin and inside the mouth, and others. And Cowden syndrome (caused by mutations in the PTEN gene) is also very rare! https://rarediseases.info.nih.gov/diseases/6202/cowden-syndrome gives good information. If you are concerned, talk to a genetic counselor. www.nsgc.org
Dee (NJ)
Google Johns Hopkins brassica tea. They are associated with research on this component of brassica vegetables.
CityTrucker (San Francisco)
Because ic3 is classified as a supplement, it’s manufacture Is outside of FDA oversight and regulation. Available preparations can vary hugely and may even contain none of the compound at all, making any data, no matter how tantalizing. Based upon easily available sources, uninterpretable. Some patients, like Ms. Anthony, will grit their teeth, participate in blinded studies and wait. Medical rarely rewards or recognizes these heros. Worse yet, pharmaceutical giants can turn each successful trial into an opportunity to develop a new drug and set exorbitant prices. Patient must struggle with disease, while delaying their hope, then be thrown into the Mosh Pit with billion dollar insurers and drug companies, fighting for affordable access to life-saving medication, derived from Brussels Sprouts. We deserve better.
PL (ny)
If people wait for the precise mechanism to be elucidated in an exhaustive, elegant way, it will be generations before a treatment finds its way into clinical use. There is enough evidence in the basic science to move forward now. Sometimes drug discovery and medical progress needs to happen from the ground up. If researchers and regulators don't feel the urgency, before any more lives are lost to cancer and other illnesses, people should take matters into their own hands and try the OTC drug, like the mothers did who spearheaded an effective treatment with CBD for severe seizure disorders in their children. It's not just a nice career's work to take 30 years studying. People are dying now.
E (Pittsburgh)
One issue with the current laws about supplements is that whatever you buy in the drugstore doesn't actually have to have the listed supplement in it...
Muzaffar Syed (Vancouver, Canada)
What amazes me, treatment for cancer cost about US$1800, the same drug in Australia cost $8 and South Africa that cost $6. Hey people, what are you doing to yourself? Ask your Congressmen/women, and Senators to put their acts together and rein in this non-sense. God Bless American People!
Louis J (Blue Ridge Mountains)
@Muzaffar Syed The US congress is buy, for and of the Corporate/Medical/Military. People ....they are the fodder of the Corporate Machine. When the political elite say 'the political will isn't there' they really mean the big money they get is on the other side. Curing people of cancer with pure extract of vegetables....no money in that!
Fourteen14 (Boston)
Forget about head size. we are out of the dark ages. How large? And if the family all have large heads? And if that's a large head, does it actually mean anything? How often is it meaningful? So-called clinical criteria are subjective guesswork. Just get your genome mapped for $99 and you will instantly see if your pten gene is mutated and where. No need to be smart or lucky. You will instantly learn that it plays a role in mitochondrial energetic metabolism by promoting COX activity and ATP production, via collaboration with isoform 1 in increasing protein levels of PINK1. And that you can decrease it's functioning (Very Bad) with cadmium (a heavy metal in the air everywhere from geoengineering), so you might want to do a heavy metal detox protocol. And that you can increase the functioning of the pten pathway (Very Good) with Resveratrol and Vitamin D3. No need for any MDs.
Norma McL (Southwest Virginia)
@Fourteen14 I like your posts, but the "big head" description in the story was what got my attention: My brother was born with such a big head that my uncle put his hat on him, and it fit! He also had horrible cystic acne until he was 30, and the supplement is taken now by a lot of people with cystic acne. And he has had prostate surgery for cancer. No, none of these things "run in the family." No one else has a big head, and our skin has always been clear. So yes, I think the descriptions likely are meaningful.
John V (Oak Park, IL)
Terrible, misinformed advice. OTC genetic (ancestry) testing does not detect Pten mutations (search it). In vitro (“test tube”) enzyme data frequently does not translate into clinically effective nor toxicity-free therapy. Avoiding the “MD” is a sure way to miss treatable cancers in Pten mutation-associated diseases, with terminal consequences. It’s easy to bamboozle with a bunch of esoteric-sounding data.
turbot (philadelphia)
Screen autistic kids and schizophrenic patients for Pten. If positive, work-up the rest of the family.
Easy Goer (Louisiana)
Wow. The hat question (regarding increasing head circumference) blew me away at first. As Dr. Pandolfi said, "We got lucky or smart." Well put. I've used a similar line betting at thoroughbred racetracks for decades: "I'd rather be lucky than good." A similar line is from the Marty Scorcese film "The Color of Money" (1986), starring Paul Newman and a young Tom Cruise (also Newman's 1st Oscar win after 6 previous nominations): "Fast Eddie Felson" (Paul Newman) says, "Money won is twice as sweet as money earned." So true.
cheryl (yorktown)
I was curious about head circumference as a possible clue or symptom. Does this suggest that simply a circumference on the large side of average is a possible indicator, OR that the circumference is expanding over time, when it should not change?
mlm (north nj)
@cheryl I am a genetic counselor. Many individuals with PTEN mutations (also known as Cowden syndrome) are born with a larger than average head circumference. It is one of the major clinical criteria of the syndrome.
cheryl (yorktown)
@mlm Thanks for the answer.
RLiss (Fleming Island, Florida)
Google "dangers of supplements"....they aren't regulated by the FDA. They are "guaranteed" only by their manufacturers (oh, and we should always trust the people making the money from something they sell!!! ). Many are made in third world factories and Consumer Reports did an article, after examining a random sample, which found mice, rat and roach parts as well as "floor sweepings" in them.....the manufacturers can essentially make ANY claim they want about what the supplements will do for you. Consumer Reports also found the amount of the essential ingredient (such as "vitamin E or "Coenzyme Q" varied wildly per capsule, from way too much to none..... Based on that info, to take a supplement HOPING it will prevent cancer??? No, I don't think so.
Wut (Hawaii)
@RLiss I'm assuming you've never been in the position of having a medical condition that's potentially fatal. Unfortunately, I have something similar to the people in this article (but cannot be solved by a supplement), and I think most people would gladly take a supplement if it offered any possibility to avoid further surgeries or cancer. People will take their chances with supplements and try to shop for good options when it's their life on the line.
Ken Lewis (South Jersey)
. @RLiss, . Its not quite that bad. United States Pharmacopeia, aka USP, is available for brands to have be their quality checker. If the supplement passes USP's check, the brand gets to put "USP" on the container. Off the top o my head, I think ConsumerReports is remiss in the very slight coverage, if any, and i'v been a reader for decades.
What'sNew (Amsterdam, The Netherlands)
@RLiss On the efficacy of supplements. Some may be effective, some not. I take glucosamine twice a day against arthritis in my knees and in one of my finger joints. When I stop using it, the pain returns in a few days. Glucosamine has been investigated as a drug against arthritis, but I read a few years ago that no studies have been reported that show a significant beneficial effect. It works however for me. As a single individual I am not statistically significant. Nobody will become rich from my glucosamine use: it is cheap. We live in a world where ethical standards diminish and manipulation increases. People easily bribe and are easily bribed. Corruption is pervasive. So as in so many issues, I have to judge for myself. If you take a supplement against a certain condition, test its beneficial effect upon the condition by regularly stopping to use it.
Norman (NYC)
PTEN and cancer is best explained in dance. https://www.youtube.com/watch?v=11uWdukMhTc Dance Your PhD 2017 : A Story of Tumor Suppression. Deepti Mathur. PTEN and cancer explained in dance. A metabolic pathway uses glutamine to create a component of DNA. This pathway is regulated in part by PTEN. Loss of PTEN allows the pathway to go into overdrive, leading to cancer. A drug that interrupts the PTEN pathway preferentially destroys cancer cells. Deepti Mathur is at Memorial-Sloan Kettering.
Toni (Seattle)
Such a good video to understand the concept. Very well done!
Kenrk (NYC)
@Norman Easily one of the weirdest and coolest dance videos I've ever watched.
cheryl (yorktown)
@Norman wow! What a combination of disciplines, with grace!
Roberta (Westchester)
I'm not understanding from this article what is the downside to taking the supplement?
RLiss (Fleming Island, Florida)
@Roberta: Google "dangers of supplements"....they aren't regulated except by their manufacturers (oh, and we should always trust the people making the money from something they sell!!! ). Many are made in third world factories and Consumer Reports did an article once, after examining a random sample, which found mice, rat and roach parts as well as "floor sweepings" in them.....the manufacturers can essentially make ANY claim they want about what the supplements will do for you. Consumer Reports also found the amount of the essential ingredient (such as "vitamin E or "Coenzyme Q" varied wildly per capsule, from way too much to none..... Based on that info, to take a supplement HOPING it will prevent cancer??? No, I don't think so.
Fourteen14 (Boston)
@Roberta You don't have to worry about supplements. Just stick with the name brand manufacturers who have been around for a long time and have good reputations. They all have top-notch PhD staff with the best lab equipment and they quality test every batch of raw materials they receive. They test before, during, and after they encapsulate. 50% of Americans take supplements - and not a single person has ever died from taking a supplement - ever, looking back over 50 years, according to the poison control centers. Nevertheless, there are thousands of visits to the ER, most often from teenagers taking herbal energy and muscle supplements. On the other hand, there are 30 Times More ER visits due to pharmaceuticals. (Mostly adults) As for drug deaths, those "quality-tested" pharmaceutical drugs kill over 100,000 people every year from correctly prescribed doses, by MDs, in a hospital setting (AMA statistics). Some people try to commit suicide with supplements. They take a whole bottle or two - and just get better. This points to the real problem with supplements; people do not take enough of them. The problem with pharmaceuticals is that people take them at all.
Darth Vader (Cyberspace)
@Fourteen14 says "... not a single person has ever died from taking a supplement - ever ..." This is not correct. A simple Google search found this: "On the other hand, liver injuries caused by the nonbodybuilding herbals and supplements led to death or liver transplantation in more than 1 in 10 cases (13%). In fact, liver injuries caused by the nonbodybuilding herbals and supplements led to death or liver transplantation more frequently than liver injuries caused by medications (3%)." https://www.consumermedsafety.org/medication-safety-articles/item/771-liver-injuries-from-herbals-and-dietary-supplements-have-led-to-death-and-liver-transplants
J.I.M. (Florida)
The article doesn't mention DIM (diindolemethane) which is the active metabolite of i3c. DIM is also available as a dietary supplement.
RLiss (Fleming Island, Florida)
@J.I.M.: See my previous post about supplements or just google "danger of supplements".
August (Dc)
@J.I.M. I started taking DIM 40 days ago and it has changed my life. I started taking it to regulate my hormones and boy, has it! I feel like my old self again.
Fourteen14 (Boston)
@August Yes. DIM (diindolylmethane) is produced during the digestion of the i3c in cruciferous vegetables - like broccoli and brussels sprouts and cabbage. So DIM is better than i3c because it's been made bioactive and does not need to go down the biochemical conversion pathway so you can use it (you might only get a partial conversion of i3c to DIM if you have a mutation in a gene blocking the conversion pathway). DIM is an aromatase inhibitor, so it slows the conversion of testosterone into estrogen. Try also Stinging Nettle extract at a double dose. Supplements are far more effective than Big Pharma's drugs and they are also far safer and cheaper. These are all natural non-synthetic substances that are easily cleared at any dose and the body just takes what it needs. We co-evolved with these natural substances so they have generalized beneficial side-effects - since the body is about a million times smarter than any MD, it will properly use supplements wherever else it is needed according to priority.
Norma McL (Southwest Virginia)
Well, this is frightening. My brother was born with a larger head (my uncle put his hat on the baby shortly after delivery, and it fit). As a teen and young adult to the age of past 30, He also had the most horrible cystic acne I've ever seen. He has also had prostate surgery. I've never put these diverse facts together until this morning. But my brother is now 75, and I don't know as much science as I wish I did. I'm unclear if, at his age, this is relevant knowledge or if he has aged out of the dangers. Doesn't old age have ANYTHING going for it? If anyone does, please relieve me of my ignorance. I'll send him the ic3 supplement.
RLiss (Fleming Island, Florida)
@Norma McL: Talk to your doctor about your concerns for him and encourage him to talk to his.....I'm a retired RN and I have no idea. If he had this mutation, I imagine by now he would have developed a cancer.
Norma McL (Southwest Virginia)
@RLiss My brother lives in France, and I and my doctor are in the States. The surgery he had was for prostate cancer. I doubt it was recommended, given that he had no trouble; it was found during a routine checkup--bloodwork, I think. He is hyper vigilant about his health, and moderation is not in his vocabulary, so nothing less than surgery would do. But if the cancer was taken out--he was told it was--could it recur even at 75 if he has the Pten mutation?
lechrist (Southern California)
Taking broccoli sprout supplements ($20) versus waiting for Big Pharma to come out with a patented "pure" and pricey drug. Tough decision.
Evelyn (Vancouver)
@lechrist I'm alive and well today because of "Big Pharma" (a term I never use). If you take a knee-jerk, antagonistic stance toward anything related to the development of pharmaceuticals, you risk denying yourself life-saving medication should you ever need it. Think in shades of grey, not black and white.
Dan (Arlington, VA)
@EvelynLongterm use of any synthetic drug will damage some other part of your body. Drugs inhibit or promote certain bodily processes, but also damage other processes that use the same metabolic pathway. An exaple is statins that, while they lower cholesterol (not necessarily a good thing) also inhibit production of CoQ10 a very important energy molecule, especially for the heart. So, beware.
RLiss (Fleming Island, Florida)
@Evelyn: the reason so many refer to it as "big Pharma"??? Because it is.... a drug available to all is $8.00 in Australia....in the U.S. it is $2000. see: https://www.independent.co.uk/news/world/americas/us-politics/aoc-hiv-drug-cost-us-australia-ceo-gilead-video-a8919316.html
Susan (Toronto Ontario)
I understand the need for a clinical trial, but the risks are greater than health implications. Should the trial show iC3 benefits, will drug companies latch on to this as a revenue generator and eventually price it out of reach of those who may need it?
BrookfieldG (Arlington,VA)
@Susan However if the NIH were to do the research and then license to the drug companies the Treasury could reap the benefits and help to fund Universal Health Care.
BK MD (Brooklyn, NY)
Supplements are unregulated industries. For example, a study of probiotics showed that most of the products with probiotics had dead bacteria. Another study of melatonin showed that the dose of melatonin per tablet was inconsistent even within a brand. It is important to study something pharmaceutical-grade for that reason. Also, you don’t know the unintended consequences of taking the supplement or side effects from taking high doses of it. That is the worst case scenario. Other scenarios include that it may also be useless in humans (because mice are different than humans), or only work to prevent some cancers and not others. In the meantime, if someone is taking it, they may stop doing extensive cancer screenings, and then die of cancer. That is why studies are needed. I wish it were as easy as taking a supplement, but most things are not. I think that is why some people like the supplement industry more than seeing a doctor. Medicine is always hung up on facts, truth, weighing risks/benefits, and recommending treatments that have proven benefit—usually “miracle drug” is code word for the placebo effect or modern-day “snake oil” (ie, something that does nothing).
Norma McL (Southwest Virginia)
@BrookfieldG The NIH brags that it provided the money for the research that led to the shingles vaccine. I ran into a friend recently who was having the shingles shot. Even with Medicare and Medicare supplemental insurance, the shot cost her $165. Frankly, this prices the shot out of reach for most seniors. If the NIH is going to use taxpayer money for research that is essentially designed to benefit a pharmaceutical, I think the responsibility to taxpayers should be taken a bit more to heart. And no, I cannot imagine that happening in my lifetime.