"Natural treatments" and ET

Turmeric! It's what makes your curry powder yellow

and your chick peas nice and spicy. Can it help with ET? 

Several people on this blog and the Facebook page have an interest in "natural" treatments for essential thrombocytosis. Turmeric and resveratrol have come up in conversation, but the hard scientific evidence about how well these substances work is sketchy.

But since there's a lot of interest in these treatments, here's what I found out, but first, a few caveats and disclaimers. (You can see from the number of "buts" that I'm a little hinky about this topic.)

No, I don't care about a cure ...

... But I know a lot of other ET patients do. So, first, good news from the MPN Foundation, which reported research indicating that the CALR mutation might be susceptible to immunotherapy.

As I understand it, researchers have determined that they can "distill" a concoction that seems to neutralize the CALR mutation. I assume that these tests have been conducted at the cellular level and not in living organisms, but not a lot of info is available in the article's abstract.

At the risk of being the crochety old lady that I am, let me rain on this parade momentarily. It takes drugs years to crawl through the FDA from this initial research stage before they are approved for use. And we know from countless other examples, such as Jakafi, that cures and new drug treatments are not going to come cheap. Jakafi costs over $10k per month. People I've spoken to who are on it love it. But it can stop working without warning. And it's not yet approved for ET, thus many insurance companies won't pay for it.

So at 63, I don't expect to see a cure in my Future and if there is, I doubt I'll be able to afford it. What I WOULD like to see is better palliative care for the Right Now.

Seven wishes about ET

In the six years since I started writing this blog, I've talked to hundreds of ET patients online here and through my Facebook page. 

Besides sharing our ET diagnosis, we all seem to share some common wishes as ET patients. So I thought I'd start out 20201 by offering the seven things I wish about ET that I think I share with most of you: 

Wish 1: I wish that health care providers understood that lack of information is the worst "side effect" of having ET. I hear something like this from a lot of my fellow patients: "I was just diagnosed with ET, and my doctor says he's not worried about it. But then I read online that I have cancer! I am really scared now!" Please, health care providers: Five minutes of clear, brisk info and a fact sheet would go a long way toward  helping us better understand our disease.