Yes, ET is cancer. Why is that so important?

Do you ever feel like this when you're trying to come to
terms with your ET diagnosis? Yes, I thought so.

I belong to and participate in some of the private Facebook support groups for ET. When new people come on line, one of the first questions is often this: "What's wrong with me? Is ET cancer or not?"

Often the confusion arises when doctors tell patients that they have a "disorder" or a "pre-cancer" or "cancer but not really cancer," or (weirdly) a "benign cancer." Then they look up their disease on line, and find out that ET is a "rare, chronic blood cancer."

And they freak out.

It's beyond me why doctors don't realize that, when they give patients vague info, those patients are going to go online. And that's not going to make the doctor's life easier. But that's a doctor problem.

When new people ask the "is it cancer?" question, support group members often jump in and very vehemently affirm that ET IS cancer.  I wanted to learn more about why patients feel this is so important.

Golden retrievers may hold cancer keys

A study of 3,000 golden retrievers in the U.S. may eventually help researchers understand the role that environmental factors play in spontaneous mutations like the ones that cause ET. (And, yes, dogs can get ET, though instead of coming with clot risks, canine ET more often results in inflammatory disease.)

Dogs and humans share as many as 500 diseases in common, and dog studies have already been parlayed into treatments for some cancers in humans. NBC news reported  that Emily Brown, who suffered from a terminal type of bone cancer, was treated with an immunotherapy designed for dogs.  She has lived for 20 years since receiving that therapy.

According to the Washington Post, cancer is the leading cause of death in all dogs after age 2. Sixty percent of golden retrievers, according to a CBS report, get some form of cancer in their lifetimes. (Here's a healthy but somewhat hyper goldie in the video below!)

Family viewing , triaging, and MPN tracking

I found a really good video that you may want to view with your family that explains a lot about MPNs, why we're tired, and how it affects our lives. The speaker is Dr. Robyn Scherber, Mayo Clinic MPN expert. Even if some of the science is over your head (and I admit it's often over mine, which is why I have a doctor ...), the 30-minute video covers a lot of ground. It will help your family understand that, even though we don't look sick, we are often jealous of our time and energy.

As always, many thanks to MPN Advocacy & Education International for making these conference videos available! They are linked in the Resources list at right.

Hydroxyurea adventure: The first six weeks

Yes, those are almonds in my pill holder. It's not a good idea to
put the HU in with your other meds in case of capsule breakage,
so the almond reminds me to take the HU. I got some paper pill
cups in a package of 500 to help avoid handling the caps. I just
shake one from the bottle into the cup and take with lots of water.
I also keep the HU in a separate sealed bag. That way, the pills
can't escape if I forget to put the bottle cap on tight.

Readers who follow Got Essential Thrombocytosis on the FB page (link at right) may recall that I started hydroxyurea (HU) February 2. I'm doing just fine.

But because there is sometimes a lot of fear about "chemo," and HU is still the first line of treatment for most ET patients around the world, I thought it might be helpful to capture my own experiences on it in real time.

Remember that your experiences may not be like mine. If there's anything this disease teaches us, it's that nothing is "typical."

January 12: My cardiology nurse (I have a heart valve problem not related to ET), asked how I was doing on the hydroxyurea. What? I thought Dr. Blood wanted me on hydroxyurea only if my spleen showed enlargement back in November. It didn't, so I assumed that even though my platelets had moved to about 750, I was still stable. Emailing Dr. Blood.

January 19: Dr. Blood called today and said, yes, she wants me on HU and to await instructions from Oncolology Nurse S. "We don't just call that in to your local pharmacy any more," Doc said. She said Nurse S would answer all my questions.

It's Rare Disease Day

It's Rare Disease Day, which falls on February 29 (a rare day), but on February 28 in non-Leap Years. I want to mark the day with a little info about where we've been and where we need to go as ET patients.

While ET is recognized by the National Organization of Rare Diseases, ET does not fit the legal definition of "rare." A "rare" disease is one that affects one in 200,000 people or more. ET affects about one in 135,000 people.

Why does that matter?

Thinking about shingles

I've noted before that ET complicates everything, and that includes protection against the shingles virus.

Shingles affects about one in three people over age 65. Those who had chicken pox as children already have the shingles virus (though this is not a guarantee you will get shingles). Shingles is not pleasant, and a more severe strain of the virus can cause painful blistering for many months. Blisters can also leave faint scars.

Those of us with ET, especially those on chemo, are considered immuno suppressed and may run a higher risk of shingles and for getting a more severe case.

Compression stockings: "natural treatment" for ET complications?

As someone who was on my feet a lot as a teacher, or sitting in one place for long periods as a writer, I found compression stockings made my legs feel less tired. As an ET patient, I've since moved on to medical grade compression socks to help prevent prevent deep vein thrombosis (DVT), which can be a complication for some of us with ET.

The Centers for Disease Control has lots of information on DVT along with general guidelines about compression stockings. And here are some Canadian guys who explain compression stockings specifically!

But before you head off to your medical supply store, read the rest of this post!