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!

Why are my drugs so expensive? Dr. Prasad explains

Cancer patients are too often paying exorbitant prices for medications that offer no real benefits in quality or length of life, according to Dr. Vinay Prasad, hematology oncologist at the Oregon Health and Sciences University.

Prasad spoke Wednesday in a Webinar offered by Breast Cancer Action, a California-based group that advocates for less toxic cancer treatments and a less toxic environment that contributes to cancer incidence. The group takes no money from drug companies. See the Webinar. 

Some highlights and what this all means for you:

The cost of cancer drugs has risen far above the cost of inflation. Prasad noted that the cost of cancer treatment in 1975 was $129 per month. That would be about $600 today, adjusted for inflation. However, the average price of new cancer drugs today is about $10,000 per month. That is in line with the cost of Jakafi (ruxolitinib), which many ET patients take.

Top five stories in 2017

Taking a moment to identify the five stories you were most interested in last year. If you missed them, they are linked below:

Number 5: Diagnosing ET and scoring your ET risks. Related to this story: IPSET helps you figure your thrombosis risk

Number 4: Taking chemo? Use a condom

Number 3: Incremental care and ET

Number 2: Why your doctor doesn't think you have symptoms

Number 1: The debate: Should some ET cases be reclassified as pre-MF

Anything on the horizon you want to know about for 2018? Leave a comment here or on our FB page, link at right.

Be well!

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