Hemarthrosis, bleeds and clots

I recently read a post on FB from a lady with ET who had suffered from hemarthrosis, so I did a little digging to learn more.

Hemarthrosis is when you have blood hemorrhaging into your joints. It happens to hemophilia patients. It can also happen, though rarely, to those with ET, so it's something to be aware of but not overly concerned about.

And now for some good news: Coffee!

Smile! Coffee's good for you!

I published my homage to coffee last year on St. Drogo's Day (St. Drogo is the patron saint of coffee). And by now you've probably read all the encouraging news about the half-million-man (er, person) study that showed coffee drinkers live longer.

According to a study published a couple of weeks ago in the Annals of Internal Medicine, of more than 450,000 people in their early 50s followed over 16 years, those who drank the most coffee were least likely to have died. Men seemed to receive more than twice the benefit of women from coffee drinking. Men who drank three or more cups of coffee per day were 18 percent less likely to die than men who didn't drink coffee. Women who drank the same amount of coffee were 8 percent less likely to die. 

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.