Writer explores "the pressure to say you're OK"

Los Angeles Times writer Adam Baer writes about the exhausting pressure on the chronically ill to say they're fine: 

As a survivor of multiple cancers and rare diseases, I've had to write my fair share of group emails alerting friends and family to medical news. So I understand the impulse to sound upbeat. Diagnosis emails and social-media posts are now a genre with set tropes and expected turns of phrase.

We swear we'll morph into rays of light during the darkest times in our lives. We vow to battle our infirmities — as if that were possible beyond seeking treatment — and to become “well again.”

New York Times editorializes on drug costs

Saturday's New York Times editorial on the cost of medication in America was timely given recent FDA approval of Jakafi for some MPNs. The drug will set you (and/or your insurance carrier) back $7,000 per month.

Water, water everywhere. So drink it already!

Some patients with ET (including me) say they feel better when they drink more water. It's anecdotal information mostly, though the University of Maryland's Medical Center site encourages patients with all MPNs to move toward a healthy diet, including adequate hydration. The idea is that the better shape you're in, the better your body is able to cope with the added stress of disease.

So how much water is enough?

Two interesting reports on JAK-2 and CALR type ET

UPDATE: January 15, 2016: Ruben Mesa, hematologist with the Mayo Clinic offers a video summary of more ASH info. Click below to play.

Original post, December 16, 2015: The MPN Research Foundation (see links at left) puts out a yearly report from the American Society for Hematology (ASH). Research updates from this year's conference are online now. Among the papers presented were two that caught my eye about ET, and specifically about the differences between JAK-2 ET and CALR ET.

Caveat, caveat, blah blah blah: It's important to remember that most of these studies are are small and of relatively short duration. It's also important to note that the genetic components involved in ET are relatively new discoveries. So I'm not making life decisions around this info. But the message I got is that it's probably important for you and your hematologist to try to nail down the type of genetic mutation that causes your ET if possible.

Here's more:

JAK-2 or CALR?

In the olden days, before the discovery of the JAK-2 genetic mutation, the only way to diagnose ET was by process of elimination of underlying causes for an elevated platelet count. And even though JAK-2 tests may run false negatives (25 percent of the time, according to my hematologist), a positive JAK-2 helps your doctor initiate treatment and monitoring quicker.

But JAK-2 isn't the only mutation associated with ET.

Last year, Blood Journal reported a study of ET patients with two different types of genetic mutations, JAK2 and CALR (calreticulin). The bottom line for us patients is that those with the CALR genetic mutation seem to have a much lower thrombosis risk than those with the JAK2 mutation. That's signicant info given that the greatest risk for ET patients is clotting.

Here's more:

For Giving Tuesday: How much was your bone marrow biopsy?

On Giving Tuesday, I got the bill for my bone marrow aspiration and biopsy. Looks like I'll be giving a few hundred bucks to the pathology center in the near future!

While I realize that ET is one of the cheaper forms of cancer because it doesn't involve chemo infusions, radiation, or many oral meds (heck, I just take aspirin for mine), "cheap" in Cancer World is a relative term.

As researchers look for the elusive cures for these diseases, maybe somebody should be taking a good hard look at ways to control the costs of diagnosing and treating cancers, or at least providing some price comparisons for procedures and diagnostics so you know if you're getting ripped off.

You think you're fatigued now? Here comes Christmas!

First day of Advent, and, as Archie Bunker used to say, "The Christmas season is at our throats again." And that means increased fatigue. While doing research for my previous post, I learned that "cancer fatigue" is a real phenomenon that persists despite rest and sleep (though you certainly need both!). Patients with ET have that kind of fatigue. And that makes creating the "magic of Christmas" for your family a whole lot harder.