ET complicates everything

It's me! I'm running the yarn swap table at the Michigan Fiber
Festival. I look pretty good for somebody with cancer who's
running on about three hours of sleep, don't I? Despite
challenges, it was a great time, but ET makes this complicated.

I have REALLY neglected this blog due to a hectic schedule and the fact that ET complicates everything. As an ET patient you have to learn to prioritize and sometimes ditch what's not necessary. I need to prioritize my blog here. Meantime, here are some observations from my summer activities.

As you may recall from previous blog entries, I went to physical therapy this summer for sciatica. The PT really helped--no more sciatica!--and I can sleep through the night now. That's really important because when a common problem like sciatica messes with your sleep it can make you feel run down really fast. That's because you're already fighting fatigue (the Number One complaint of ET patients) from the cancer (and chemo for some of us), and the lack of sleep makes you extra fatigued. Lack of sleep also worsens the brain fog. And lack of sleep for long periods can also be hard on your general wellness. ET complicates everything!

MPN Landmark survey results are in!

Over on our Facebook page awhile back I posted a link to the MPN Foundation's Landmark survey. Many readers of the blog and FB page took that survey, and the results are in.

Please join us on our FB page to discuss. Meantime, some of the interesting tidbits I found:

• More than half (56 percent) of us say our disease affects our quality of life. Not surprisingly, fatigue and headaches are our most reported symptoms.

• There are differences in treatment goals between doctors and patients. For example, 21 percent of us want the progress of our disease to slow. Only 4 percent of doctors set that as a top goal.

• Most doctors (94 percent) said they understand how our disease affects our lives. But fewer of us (74 percent)say that the doctors actually do get it.

• About 56 percent of us have changed our doctors, mostly because we weren't satisfied with our initial care. But once we found the right doctor, we are happy with him or her.

Here's Dr. Ruben Mesa, who took the lead on this study, talking about the findings.

Be well!

Home

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.

My self-improvement kick #5: Physical therapy

Well. Went to the doc for a blood pressure check last week, and the upshot is that I start four weeks of physical therapy in Friday for a bum back, hip, and knee. Life just gets funner  and funner here in the land of Over Sixty!

The phases of ET

Phase Zero:
Blissful Ignorance

ET is an "indolent, progressive, chronic myeloproliferative neoplasm," which means it is a slow-going cancer with no cure that does get worse over time. The issue of disease progression--how ET may worsen over time--came up on the Facebook page the other day, and I realized that a lot of ET patients don't really think about this, so let's dig in.

Doctors don't seem to talk about disease progression much. Instead they talk about risk factors. There are probably a couple of reasons for this. First, doctors are busy, so why invite a bunch of questions or get ET patients all upset by doping out progression possibilities that might never occur? Risk factors help assess where the patient is right now. Second, the progression of ET and other MPNs is scantily researched, and doctors can't tell you when or if you will progress to another phase.

But I think part of dealing with an chronic and progressive illness is understanding where it might go and be better prepared. So here are the phases I think about when I think about living with ET. These phases aren't "official" or come from a doctor; they just capture my understanding of what progression means.