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.

My low-energy pot garden

Some of my pot garden plants: geranium, nasturtiums, mariachi
peppers, rosemary, gerbera daisies and some anemic basil. Never
have much luck with basil for reasons that elude me.

Ah, the Fourth of July weekend, often the laziest and most sultry weekend of the summer here in the Upper Midwest. It's a good weekend for watching birds and bunny rabbits, eating strawberry shortcake, reading a book in the lawn chair, and admiring the garden.

I used to have a big garden with vegetables and herbs. It had a fence around it and everything.

However, I don't have the energy for that any more, so I garden in porch pots. I used to be a snob about using only clay pots, but, frankly, those things are heavy to move around, and they suck up a lot of moisture from the plants. So as they busted, I started replacing them with plastic.