New feature! The weekly ET poll

This blog and Facebook page are doing well enough to try a new feature: The weekly poll.

At top right each week you'll see a new question. You can answer and see the poll results in progress. This week's question: What do you worry about MOST as an ET patient?

The poll closes in a week, and I'll update this entry with the final results. Then a new question will be posted. 

If you have ideas for future questions and answers, please suggest them in the comments box or over on our Facebook page.

Be well!

Does your doctor CARE?

Doc lacks empathy? Try asking different questions!

Interesting article in the Washington Post today that shows patients may actually get better quicker if they have doctors who rate high on the CARE scale. ET patients have a chronic illness that doesn't get "cured," but how might understanding the scale improve communication with your doctor?

Let's take a closer look.

The CARE scale asks patients to rate their doctors from 0 to 5 (5 being best) on these 10 questions:

Ischemic digits and circulation exercises

Squeeze the foam ball for one second ...

... and release for one second, spreading
your fingers

I recently wrote about stroke risks for ET patients, but there is another risk you might want to be aware of, and that's ischemia in the hands and feet.

Ischemia is restricted blood flow, often caused by small clots in the hands and feet or further up the "line" in an artery or vein.

I don't have hard numbers of the incidence of ischemia in the hands and feet, fingers and toes of ET patients, but it seems to crop up fairly often in the medical literature. So pay attention to the circulation in your hands and feet.

Some tips:

Interferon, another ET chemo

Patients taking pegylated Interferon
often do so by giving themselves
subcutaneous injections at home.

While Hydrea (hydroxyurea) remains go-to drug for ET, some patients are taking Interferon, which has been a known platelet reducer since the 1990s. It still seems to be an experimental drug; studies of ET patients and Interferon have been small and have not yet covered long-term effects.

Here's what I've been able to find out about it:

There are two types of Interferon, alpha and pegylated. Pegylated Interferon stays in the body longer and seems to be more effective and have fewer side-effects.

A study in 1993 (before the three ET mutations were discovered), 51 German MPN  patients (26 of whom had ET) participated in a limited study. All patients in the study experienced reduced platelet counts, 78 percent of them lower than 450, which is the upper level of the "normal" range established by the World Health Organization.

Forty of the MPN patients were treated for more than three months with Interferon. Ten of those patients discontinued used within the first year or so because they could not tolerate side effects: nausea, fatigue, dizziness, fever, headache, diarrhea, weight loss, heartburn, hair loss, bone pain, and anemia. However, the study concluded that for younger patients, especially those with a history of thrombosis, Interferon treatment should be considered, and most research in the 1990s called the drug "promising.

TP, a temporary measure for reducing platelet counts fast

Therapeutic plateletpheresis (impress your friends with that term!), or TP, is basically a process that "vacuums" out the excess platelets in your blood and returns the blood with more normal platelet numbers to your body. Blood goes out one tube and in another, so it's not the same as a transfusion, in which you get someone else's blood.

TP is not ordered routinely for ET patients, and there isn't a lot of info on it. Johns Hopkins and the Cleveland Clinic both note on their ET info pages that TP is largely an emergency treatment. For example, if you have had a stroke or other severe clotting incident and your platelet counts are over a million, the docs may decide your platelets need to be lowered before a drug like hydroxyurea or anagrelide can get to work on the problem.

According to the National Organization for Rare Disorders, plateletpheresis is the same process blood banks use to collect platelets from donors, and it will take platelet counts down immediately. NORD says that TP has not been studied much in ET patients, though the procedure has been used for decades in emergencies.

Anybody have any experience with this? Please chime in.

Be well!

Home

Ice! The hot new anti-inflammatory treatment

Cheap vodka and a couple of Ziplock bags can be used to make
a flexible ice pack!

I recently had a six-month blood pressure check with my family doctor and started whining about my periodic sciatic and neck pain due to arthritis. I told her I was taking low-dose aspirin for ET, and that I didn't want to take a bunch of pills. She suggested ice.

And, by golly, ice is my new best friend! This also might appeal to those of you interested in alternative therapies for aches and pains.

I have an ice bag (the kind you used to see on the heads of people with hangovers in old-fashioned cartoons). They're pretty cheap and widely available at your local chain pharmacy or big box store in the medical supplies aisle. Some even come in designer patterns.

Thinking about stroke risks

I read a moving piece in the Washington Post last week about a woman trying to teach her mother how to read following a stroke that left her with alexia, the inability to read. As a voracious reader, it reminded me that those of us with ET are considered to be at higher risk for blood clots (aka "thrombotic events") of all types, and one of the most serious of these types of events is stroke.

So what does the stroke picture look like for ET patients and what can we do about it? The research can be confusing, but here are some recent research and practical ideas I hope are helpful.