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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ET and mental health

Jimmie Holland probably isn't a name you've heard, but her work was well known to oncologists and patients with acute cancers.

Holland, who died recently, pioneered onco-psychology and mental health care for cancer patients. Her obit in the New York Times tells a bit about her work:

"It's bad enough to have cancer," she told the web site Medscape.com in 2015, but when all your family and friends are saying you have to be positive and you have to fight this thing, and the patient is exhausted and beaten up by the treatments--it seemed to me that adding that burden to be positive was just ridiculous." 

Our ET is chronic rather than acute. Our treatments and disease are less intensely exhausting, at least initially, but they last a lifetime.

Those of us with ET are often told our cancer won’t kill us and won’t shorten our lives. That isn't entirely true. And we often are not told about how to improve quality of life or deal with med side effects.

I talk to ET patients every day who think that their symptoms must be in their heads because support groups are thin on the ground, and they don't know anyone with ET.

How do you deal with the mental aspects of ET? Discuss here or on our Facebook page, link at right.

Be well! 

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ET in younger patients

This little video featuring Dr. Naveen Pemmaraju from Anderson Cancer Center is getting a lot of buzz over on our Facebook page, so I am cross-posting it here. Based on the hits, I'm guessing there is a real need to talk about treatment for children and young people in child-bearing years with ET.

Please take a listen (about three minutes), and discuss here or on our FB page (link at right).

Some things younger patients should discuss: Can youngsters take daily aspirin therapy? What are the long-term effects of chemo? How will ET affect fertility? How will ET affect pregnancy? What ET medications are safe to take during pregnancy?

Be well!

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