Monday, March 28, 2016

Mentos and Diet Coke: What really causes ET?


No, Mentos plus Diet Coke does not cause ET (probably),
but the way Mentos and Diet Coke cause a chain reaction
offers an analogy for how ET mutations might occur.
Click to see a cool Mentos/Diet Coke powered car!
Most ET research focuses on treatment and cure instead of what causes the mutations that lead to ET and other MPNs in the first place. In fact, I only found one such study in the International Journal of Research and Public Health. It was done on a relatively small group of mostly PV patients in Pennsylvania in 2015. You can read the whole thing here if you want.

The gist of the study is this: Researchers theorize there may be both a genetic and an environmental component to ET and other MPNs. Let's call it the Mentos and Diet Coke Theory to make things simple:

Imagine that, among the genes that make up your DNA cocktail, you inherited some Mentos-genes. Not everybody has these particular genes, just as some people don't have the genes for blue eyes and curly hair.

Let's also imagine that there are a lot of substances in your environment ... like Diet Coke. Diet Coke isn't a problem for everyone, just as some people (lucky them!) aren't bothered by pollen at hay fever time.

But your Mentos genes are sensitive to the Diet Coke in your environment, and together they create a chain reaction leading to genetic mutation, and ka-boom, you've got ET or some other MPN!

Exactly which genes and environmental chemicals are involved in the mutations that cause ET aren't really known. The 2015 study did identify a string of genes that looked likely, but for now that needs more research. And the study posited that some compounds like benzene, known to cause other types of cancers, might be the environmental culprits. (FWIW, benzene is everywhere, just about like pollen. It's used in the production of gasoline, dyes, synthetic fibers, rubber, lubricant, insecticides, plastic ... you name it and there's benzene involved in it.)

But whether Benzene & Friends are the specific agents that might lead to ET is unknown.

Also unknown is how exposure to carcinogens might (or might not) contribute to the progression of ET.

Complicating the picture is the fact that three different types of mutations have been discovered in ET patients--JAK2, CALR, and MPL. And some patients are triple-negative, having no known mutation. Would the same Mentos-Diet Coke combination cause all these mutations?

Perhaps one reason that more research isn't done on the root causes of MPN mutation (and the mutations that cause so many other, more common cancers) is because there are so many variables to study. Human beings have something like 24,000 genes. There's also a long list of carcinogenic substances science has identified. (Check out the list, and you'll wonder why you're not already dead.) It's not just a matter of figuring out which substances act on which genes, but how much and over what period of time exposure to those substances has to occur.

So you can see this would be a pretty difficult research job.

And, honestly? If, after several decades of exposure, 1 in 2,300 people end up with ET because they're exposed to a chemical needed to produce gasoline, is it realistic to expect that people are going to ban that chemical? Yeah, that made me laugh, too.

But.

What if the substances that trigger ET and other MPNs aren't just dangers to us? What if the environmental factors that cause our cancer threaten many other people and our planet and we just happen to be extra sensitive to them?

We won't know without more research. So I do hope you'll encourage your doctors, legislators, and the research organizations you contribute to to look not only at cures but at causes for our disease. In the 1960s Rachel Carson imagined a "Silent Spring" in which pesticides had so damaged the food chain that there were no more birds singing. Many of those pesticides have since been banned. We ET patients could be the canaries in the cage that warn the rest of the world about dangers to all.

Be well!

UPDATE 3/30: Really interesting article about known hereditary cancers from the National Cancer Institute. Clearly explains how inherited mutations work and why some people who inherit these mutations don't ever get sick. Again, important to remember that research into what causes the genetic mutations associated with MPNs is still in its infancy.



7 comments:

  1. I have read that EMFs (wifi, etc.) and stress can lead to ET. I also have been diagnosed with a high level of lead in my blood, which my naturopath believes may have lead to ET as well. I am on a two-month detox to see if it makes any changes. We shall see!

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    1. Katherine, hope you will check in here. It's been about two months since posted, and I'm interested to see what kind of results you got from the blood detox!

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  2. I read a lot of things about the causes of ET, but so far no one has anything definitive, just lots of theories, and it's likely that the causes are not one (or even two or three) things.

    If you are trying alternative meds, be sure to tell your doctor to make sure that whatever you're given doesn't interfere with your regular meds or harm your condition.

    This site is for sharing experiences and info, but not to prescribe or encourage any particular line of treatment.

    Be safe!

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  3. Wow. I was just talking about this last night to a friend.

    I have a Mustang GT. I've owned it for 14 years. Well, 10 of those years I had a custom exhaust setup on my car which exposed me to an impressive amount of gas fumes on a daily basis. You think that I would have done something about that...but no, it was more important that my car have that beautiful angry growl that only Mustangs can have. So it has been crossing my mind a lot lately whether that Benzene exposure caused my ET. Especially considering the fact that I developed it in my 20s.

    I'll never know. But it really doesn't matter anymore because what's done is done. And after being a vet tech for a almost 20 years, when you take into account the amount of radiation I have exposed myself to after taking thousands of X-rays, I guess I was begging for a blood cancer.

    And as an interesting side note... essential thrombocythemia is supposed to be relatively rare but yet two of my co-workers have had relatives with it. What are the chances?

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    1. When you get ET that young it's a puzzle. The median age for diagnosis is 60. I was right in the ballpark, onset at age 56. Dad had it but no one knew until he developed DVT in his 70s.

      But it's fun having that Mustang, isn't it? I had a 1968 model, 8-cylinder, moss green (tried to get my brother and his buddies to paint it hot pink), built in 8-track. Was a real lemon, but when it worked it was a gas to take out on the open road blasting out "Back in the U.S.S.R." from the White Album. Gotta weigh life's risks against pleasures.

      Chances of finding other people with ET is pretty rare. If about 1 in 135,000 people get it, there would be only two or three people in the whole of a small country like Iceland who had it.

      Glad to know you are a vet tech. I feel I should get an honorary credential for the 20+ cats I've had over the course of a lifetime. They all just showed up in various states of health that we had to nurse. I get a kick out of how different they all are, though their motto is always the same, "Obey no master, serve no purpose." I'd like to get a dog when I retire to get me out for walks more often.

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  4. You are correct about risks and pleasures...I have had so much fun in that car. It's nickel-and-diming me now but I'm having a hard time letting it go. Hot pink would have been awesome. And you have to have the V8 if you are getting a Mustang!

    I told my boss about my ET and he told me that his father had developed it at age 78 and had a platelet count of 1.5 million. He ended up passing away from a whole other issue. Then one of my co-workers was telling me that her husband's father developed it (not sure what age) and ET was a relatively new discovery back then or maybe it didn't even have a name yet? She said specialists from other countries flew in to see him. She said he lost toes from the condition and he did pass away from the ET. It makes me think that ET is more common than what everybody thinks... well especially among older people.

    Does anybody else in your family have a myeloproliferative disorder? I have an aunt who is apparently polycythemic but I don't know much about it because nobody in my family is very close.

    Twenty cats makes you practically a vet tech. That's very nice of you to take care of them. And you are so right about different personalities. It always seems to me that male cats are more loving and affectionate. They also tend to have more personality. Speaking of cats, we had a cat come into work this week with polycythemia. It's PCV was 84! That is insane. It was having seizures. I wasn't at work that day but the technician who was working on the cat told me that after they performed therapeutic phlebotomy on the cat he was rolling on his back and purring and became a whole different cat because he felt so much better.

    I can't have a cat because of my dogs but maybe one day when I get older. My dog's do help me stay active. They force me to get out of bed when I don't feel like it because of fatigue or depression. And you can't beat the unconditional love.


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    1. Yes, ischemia can be a problem, and people do die from ET related strokes or bleeding. ET has been known since the 1930s, and Hydrea (hydroxyurea), originally used for leukemia, was tried in ET patients with good effect. That med has been around for decades. ET was reclassified as a cancer in 2006, by the World Health Organization, which has led to a lot more attention and research. I believe a rare disease is one that appears in no more that 1 in 100,000 people. So we qualify. February 28 is Rare Disease Day. My dad had ET. My hematologist wasn't much interested in that, but she does have my data plugged into the Mayo Clinic's database, so maybe some patterns will emerge. I heard that cats can get PCV. Glad kitty is doing better!

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ET is a serious disease that requires specialist care. Discuss anything you read here with your doctor. No comments promoting "alternative" or "natural" cures (yes, this includes Rick Simpson's Oil) will be published.