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.

Here's a message I posted to the MPN Foundation's site (with the errors cleaned up) that summarizes some of the things I've learned from all of you. I want the Powers That Be, who are focused on cures to remember that there are things clinicians and doctors could be doing to make our lives better until a panacea is found:

I hear from many other ET patients that their doctors blow off symptoms, don't review possible medication side effects that might need attention, and generally don't bother to tell patients what they could do to improve overall quality of life. What can I do for bone pain, night sweats, brain fog, and fatigue? Some docs tell patients ET is a symptomless disease, so it must be the Change, thyroid, or old age.  

Some patients are told ET isn't really a cancer. Most are told they will live a near-normal life span even though stroke, cardiac embolism, DVT, hemorrhage, ischemia and other complications could reduce quality of life, and embolic episodes are a major cause of death for ET patients. Some patients don't know that ET is associated with miscarriage. Or that ET patients should be considered immuno-compromised. 

Doctors cannot agree on med protocols. Patients get conflicting info on whether HU causes leukemia. Why? This drug has been around for decades, so why isn't there better info? Because of the spectre of leukemia, some patients are self-treating with turmeric and fish oil. Or, Lord help me, Rick Simpson Cannabis Oil. Uninformed patients are sitting ducks for snake oil salesmen. 

Docs do not talk to patients about disease progression, partly because it isn't well understood. But more info would help. 

ET is so uncommon that you won't be able to scrounge up enough people for a support group in most cities. And if you do find a support group, rich patients tell poor ones to go to the Mayo Clinic and take Jakafi (still off label for ET and rejected by most insurance companies). Not everyone can afford this kind of care. So, in addition to being sick, lower income patients feel gypped out of chances to figure out what they can do about their disease. 

Research is great, and I know there are lots of good docs out there. And I appreciate MPN Foundation, one of the first sources of reliable info I found when I was diagnosed. 

But basic patient info is really lacking, and it could go a long way to helping patients deal more confidently with their disease.

Post what you think here or discuss over on our FB page.

Be well!