Thoughts on the solstice and retirement

Me having a laugh with students as they lead
one of our final seminars.

It's the winter solstice here at 43 degrees north latitude, the shortest day of the year. It's a time that makes me think a little about how short life is, and how sweet it can be.

At the beginning of December, I retired from teaching (though I will still continue to tutor students). I invited my students to take photos in class that day and send me their favorites. These pics are a wonderful and funny souvenir of 35 years of teaching English to college students.

Over the years, the students stayed pretty much the same age. It's me who got older. There used to be a few years difference between me and my students. Now there are several decades. Some of their grandparents are younger than me.

Searching for a good night's sleep ... with benefits

Yes, I'm kind of sleep-obsessed. Like all

humans, especially ET patients, I need a 
a good night's sleep, an essential component
to health and quality of life.

As I've noted in other posts, ET complicates everything, including getting a good night's sleep. Now that it's winter, I keep my bedroom unheated and the night sweats have subsided. And I sleep better here in the Upper Midwest in lower light conditions of winter and fall. Call me weird (thousands do!), but I love seeing that sunset at 4:30 p.m. instead of 9:30 p.m. in summer.

Anyhow, I'm kind of nutty about the topic of sleep because, along with the ET, I have a bad back and occasional sciatic pain. This has been greatly relieved by physical therapy. But I took note of recent radio news on the topic of sleep in my quest to feel better rested and improve quality of life

"Eyes Wide Open" is a two-part report on sleep by Shankar Vedantam on his "Hidden Brain" program. (And if you aren't familiar with Vedantam and his fascinating reports on the vectors between hard science and social behavior, you are missing a really interesting show.)

Spleen-o-rama

Had my annual visit with Dr. Blood yesterday, and she ordered another spleen ultrasound. I had one when I was first diagnosed with ET two years ago, but since my platelets are moving from the 600s to the 700s, she wants to check it again. If it's OK, I'll continue on wait-and-watch with aspirin only. If it's enlarged, I will join Club Hydrea.

So this seems like a good time to talk about spleens!

UPDATE 3 (December 2, 2017): Spleen ultrasound was normal, so back to wait-and-watch mode for another year unless platelets spike. But here's a fun math problem! Below are the dimensions of my spleen in 2015 and the latest dimensions. Figure the number of cubic centimeters to determine any size change. Show your work!

2015 spleen: 9.7 centimeters by 5.2 centimeters by 10.2 centimeters
2017 spleen: 10 centimeters by 4.4 centimeters by 9.8 centimeters

UPDATE 2 (November 29, 2017): Had my spleen ultrasound this morning, so hope to know the verdict about whether it's time to start the hydroxyurea by Friday.

UPDATE 1: Here's Dr. Oh explaining the spleen issue for you.

Taking chemo? Use a condom

Yes, patients taking any kind of
chemotherapy should use a condom
to protect their partners from getting
a dose of chemo. 

Whether to use a condom if you are taking hydroxyurea (Hydrea) or other chemo came up on an MPN patient support group over the weekend. Most people were not aware that condom use is recommended for chemo patients. I sure wasn't. But two cancer nurses this morning confirmed it: If you are taking any kind of chemo for your ET, use a condom. This will prevent you from transmitting a dose of chemo to your partner.

Here's more info:

Three essential questions to help you determine the best chemo for you

Doctors differ in their approaches to many things, time
travel, Daleks ... and ET.

I've learned from following online patient groups that doctors, and thus their patients, can become pretty wedded to their ideas about the "best" therapy for ET.

This is a long post, so bear with me. At the end of are three simple questions to your hematologist to see if you and your doc are on the same page about your treatment goals.

Until recently ... Doctors treating ET patients were mostly worried about clots--deep vein thrombosis, strokes, clots in the heart and lungs, rare conditions like Budd-Chiari (clots clogging the veins of the liver), and small clots in the hands and feet causing ischemia (loss of blood flow). These are all things doctors remain vigilant about. Aspirin and hydroxyurea (Hydrea) and anagrelide (Agrylin) have worked well to address these problems and have been the treatment of choice for decades.

Patient Power resources

Patient Power is an online site that offers info to patients with all types of cancer, and I'm adding it to our resources list.  The site puts viewers in touch with info and interviews with lots of specialists at research hospitals. You have to sign up to gain admission (no fee), and you can get updates about MPNs in your email. The site also tracks news from oncology conferences. Patient Power is funded by Incyte, the manufacturer of Jakafi. I always proceed with caution with organizations and sites that are funded by Big Pharma. Nevertheless, the information is credible and scientifically sound. So you may want to sign up, but understand who's driving the boat.

Patient Power also has a YouTube channel. You'll need to use your browser's search function to find those that pertain to MPN's. Use the search term "mpn." Here's a video from July in which Dr. Naveen Pammaraju, Anderson Cancer Center, answers the eternal ET patient question: Why are we so damn tired?

And here's Dr. Srdan Verstovsek, Anderson Cancer Center, explaining why we have night sweats and why I feel so damn good on prednisone, which I have taken for bronchial infections.

Here are some tidbits from this summer and early fall that I found interesting on Patient Power, in no particular order:

IPSET helps figure your thrombosis risk

I'm over 60, so how come I'm not on Hydrea (hydroxyurea)? Other patients my age with lower platelet counts are on chemo, while I'm still taking an aspirin.

All I understood from Dr. Blood at our last chit chat was that she considered me "stable" (that is my blood counts were staying in the mid 600s to mid 700s), and that age 60 wasn't a magic number that indicated a need for chemo, even though everyone over 60, regardless of health status, is walking around with a statistically higher risk of blood clots.

My self-improvement kick #6: Physical therapy, massage, and flu shots

I try to keep myself in shape and take care of myself, but it is increasingly difficult what with age and ET and Life in General getting in the way. Here's my latest saga:

I wrote about going to physical therapy earlier this year, and it helped a lot. None of the exercises were terribly strenuous. Nothing hurt a lot. Most involved stretches. But do allow me this brief rant: 

I ended up having to pay about $400 for this treatment. It was worth it, and I will pay it, but I could have gotten out of this a lot cheaper if I had just asked for a prescription for a pain killer. And therein lies a big problem with American health care. Physical therapy is a "high touch" proposition. You need an actual person to assess your problem, show you what to do, make sure you're doing it properly, prescribe your exercise regimen, and follow up to see if it's working. It doesn't work all at once. I did not dance out of the office Day One and throw my cane in a gutter. But six weeks later, I am sleeping at night. And I am saved having to take a bunch of medication. I am not walking like Chester on Gunsmoke. Why don't insurance companies cover this treatment better if they truly want people off the oxy and other pain meds? 

Anyhow,  I should be good as long as I do the exercises. Which leads me to ...

The debate: should some ET cases be reclassified as preMF?

Dr. Heinz Gisslinger and some other MPN specialists are looking at whether we should add a new sub group of MPNs: preMF. This is important because it affects those of us with ET.

Dr. Gisslinger explains it here (his German accent may be a little difficult at first). I have a summary after the break.

ET complicates everything

It's me! I'm running the yarn swap table at the Michigan Fiber
Festival. I look pretty good for somebody with cancer who's
running on about three hours of sleep, don't I? Despite
challenges, it was a great time, but ET makes this complicated.

I have REALLY neglected this blog due to a hectic schedule and the fact that ET complicates everything. As an ET patient you have to learn to prioritize and sometimes ditch what's not necessary. I need to prioritize my blog here. Meantime, here are some observations from my summer activities.

As you may recall from previous blog entries, I went to physical therapy this summer for sciatica. The PT really helped--no more sciatica!--and I can sleep through the night now. That's really important because when a common problem like sciatica messes with your sleep it can make you feel run down really fast. That's because you're already fighting fatigue (the Number One complaint of ET patients) from the cancer (and chemo for some of us), and the lack of sleep makes you extra fatigued. Lack of sleep also worsens the brain fog. And lack of sleep for long periods can also be hard on your general wellness. ET complicates everything!

MPN Landmark survey results are in!

Over on our Facebook page awhile back I posted a link to the MPN Foundation's Landmark survey. Many readers of the blog and FB page took that survey, and the results are in.

Please join us on our FB page to discuss. Meantime, some of the interesting tidbits I found:

• More than half (56 percent) of us say our disease affects our quality of life. Not surprisingly, fatigue and headaches are our most reported symptoms.

• There are differences in treatment goals between doctors and patients. For example, 21 percent of us want the progress of our disease to slow. Only 4 percent of doctors set that as a top goal.

• Most doctors (94 percent) said they understand how our disease affects our lives. But fewer of us (74 percent)say that the doctors actually do get it.

• About 56 percent of us have changed our doctors, mostly because we weren't satisfied with our initial care. But once we found the right doctor, we are happy with him or her.

Here's Dr. Ruben Mesa, who took the lead on this study, talking about the findings.

Be well!

Home

Hemarthrosis, bleeds and clots

I recently read a post on FB from a lady with ET who had suffered from hemarthrosis, so I did a little digging to learn more.

Hemarthrosis is when you have blood hemorrhaging into your joints. It happens to hemophilia patients. It can also happen, though rarely, to those with ET, so it's something to be aware of but not overly concerned about.

And now for some good news: Coffee!

Smile! Coffee's good for you!

I published my homage to coffee last year on St. Drogo's Day (St. Drogo is the patron saint of coffee). And by now you've probably read all the encouraging news about the half-million-man (er, person) study that showed coffee drinkers live longer.

According to a study published a couple of weeks ago in the Annals of Internal Medicine, of more than 450,000 people in their early 50s followed over 16 years, those who drank the most coffee were least likely to have died. Men seemed to receive more than twice the benefit of women from coffee drinking. Men who drank three or more cups of coffee per day were 18 percent less likely to die than men who didn't drink coffee. Women who drank the same amount of coffee were 8 percent less likely to die. 

No, I don't care about a cure ...

... But I know a lot of other ET patients do. So, first, good news from the MPN Foundation, which reported research indicating that the CALR mutation might be susceptible to immunotherapy.

As I understand it, researchers have determined that they can "distill" a concoction that seems to neutralize the CALR mutation. I assume that these tests have been conducted at the cellular level and not in living organisms, but not a lot of info is available in the article's abstract.

At the risk of being the crochety old lady that I am, let me rain on this parade momentarily. It takes drugs years to crawl through the FDA from this initial research stage before they are approved for use. And we know from countless other examples, such as Jakafi, that cures and new drug treatments are not going to come cheap. Jakafi costs over $10k per month. People I've spoken to who are on it love it. But it can stop working without warning. And it's not yet approved for ET, thus many insurance companies won't pay for it.

So at 63, I don't expect to see a cure in my Future and if there is, I doubt I'll be able to afford it. What I WOULD like to see is better palliative care for the Right Now.

My self-improvement kick #5: Physical therapy

Well. Went to the doc for a blood pressure check last week, and the upshot is that I start four weeks of physical therapy in Friday for a bum back, hip, and knee. Life just gets funner  and funner here in the land of Over Sixty!

The phases of ET

Phase Zero:
Blissful Ignorance

ET is an "indolent, progressive, chronic myeloproliferative neoplasm," which means it is a slow-going cancer with no cure that does get worse over time. The issue of disease progression--how ET may worsen over time--came up on the Facebook page the other day, and I realized that a lot of ET patients don't really think about this, so let's dig in.

Doctors don't seem to talk about disease progression much. Instead they talk about risk factors. There are probably a couple of reasons for this. First, doctors are busy, so why invite a bunch of questions or get ET patients all upset by doping out progression possibilities that might never occur? Risk factors help assess where the patient is right now. Second, the progression of ET and other MPNs is scantily researched, and doctors can't tell you when or if you will progress to another phase.

But I think part of dealing with an chronic and progressive illness is understanding where it might go and be better prepared. So here are the phases I think about when I think about living with ET. These phases aren't "official" or come from a doctor; they just capture my understanding of what progression means.

Oral mucositis? Try magic mouthwash!

It's not just mouthwash, it's
MAGIC. It may also help
with hydroxyurea-related
mouth ulcers.

Many ET patients on hydroxyurea (Hydrea) complain about mouth ulcers, or "oral mucositis." These ulcers are like super bad canker sores that can occur on your gums or the soft tissue of your mouth. You have to figure that any med that comes with instructions, as Hydrea does, telling you not to hold the pills in your bare hands or, if you do, to wash right afterward might be kind of hard on your skin. 

But there is help: Magic mouthwash! It's a real thing, and the Mayo Clinic has more info here.

You'll need a prescription for magic mouthwash, and the formula varies from pharmacy to pharmacy and doc to doc. Basically, magic mouthwash consists of ingredients designed to address potential bacterial and fungal infection, and inflammation. So it may prevent ulcers from forming and reduce the pain if they do.

More dope on cannabis

As reported here (a few times), there is currently no hard science about how cannabis affects patients with ET or other cancers, and I'm not endorsing it's use. Nevertheless, many cancer patients take cannabis to treat both stress and the side effects from chemotherapy.

The Washington Post this week reported something like a small double-blind study at the University of Illinois-Chicago. Researchers put 42 people through a stressful situation and then measured whether cannabis (specifically THC) reduced stress.

The 42 subjects received either 12.5 mg or 7.5 mg of THC. A third of the subjects received a placebo. Those who use marijuana they grow or purchase in herbal form (rather than the pure THC) get about 39 mg of THC in half a joint, so the test didn't exactly reflect typical circumstances. Moreover, as the article notes, marijuana plants (smoked or eaten) have other cannabinoid substances that were not tested in this study.

See, I told you I was sick ...

     

Here's a bone marrow sample from an ET patient. Notice
that the megakaryocytes are more numerous, bigger and 
have nuclei that may be spread out in an irregular pattern.

Lots of ET patients complain that well-meaning friends and family tell them that they don't LOOK sick. That's because they're not looking in the right place. For us, all the abnormality is in the bone marrow.

Your blood cells, are manufactured in your bone marrow, and large cells called megakaryocytes are the "parents" of your platelets. Those are the cells that help doctors confirm that you have ET.

I found some cool slides that illustrate an ET bone marrow sample looks like under a microscope. There's one at left!

The anti-inflammatory diet: My self-improvement kick update

Here's the anti-inflammatory diet food pyramid,
just in case you forgot.

So. It's been nearly two months since I have been on the anti-inflammatory (A-I) diet. My glucose levels, which used to be slightly high once in awhile are great! ET symptoms of brain fog and scattered concentration have improved except when I am really stressed. I am a little more energetic, but I am also back on my Bike to Nowhere (stationary bike), so diet or exercise? Not sure.

I can't say that these are huge changes. I doubt if I have lost much weight; I don't own a scale, but my clothes fit about the same. Time will tell whether my cholesterol levels are better. Both weight and cholesterol are factors in strokes, so reductions here would be a plus. All of us with ET have elevated clot risks.

Sticking with the diet does pose a few challenges. The biggest one is all those vegetables and fruits! Those are at the bottom of the A-I food pyramid, which means you have to eat more servings of broccoli than bread, and that is a challenge.

Also difficult is listening to the complaints of Others Who Live Here about increasing the variety of whole grains. However, in adding more oats, barley, and brown rice to the daily mix, I'm eating less wheat. And I'm less bloated. That was an interesting development. I never put any stock in "wheat belly" claims, but the variety of grains does make me feel better.

New procedure underscores need for stroke awareness

Kurt Hinrichs was treated with mechanical thrombectomy,
this cool little "fishing line" that snagged a clot from his
brain.

All of us with essential thrombocytosis are aware that we are at increased risk for clots and strokes. National Public Radio this morning reported about a cool new stroke treatment that works a little like a teeny fishing net on a flexible line to remove clots from the brain. That report also raises some issues you may want to consider as an ET patient.

First the procedure: Kurt Hinrichs woke up one morning and fell down, paralyzed on one side. His wife immediately called 911, and he was taken to the hospital where doctors realized he was having a stroke. To remove the stroke from his brain, doctors used a procedure called a "mechanical thrombectomy." The procedure involves running a flexible tube via the groin into the aortic artery and up into the brain. At the end of the tube is a tiny little net that "caught" the clot like a fish. Doctors were then able to remove the clot from his body by reeling in the little tube.

Doctors called Hinrichs a "Lazarus patient" because of his remarkable transformation; within minutes after the mechanical thrombectomy, the stroke symptoms subsided.

Stem cell transplants and need for donors

A simple swab of your cheek cells is all it takes fo ryou to
become a bone marrow or stem cell donor. See the entry
for info on how to donate.

Stem cell transplants for MPN patients are pretty rare--and they should be for reasons I'll explain as we go. But understanding this process is something we ET patients should have in our bank o' knowledge about our disease.

In a stem cell transplant, the stem cells from a matching donor are infused into your bloodstream. In some cases, your own stem cells (saved from your cord blood as an infant, for instance) can be used. The stem cells then enter your bone marrow from your bloodstream, and the hope is that those stem cells will reverse the fibrosis caused by your MPN. A cure happens in about 50 percent of cases.

Answers to your ET questions!

I got answers to many questions from all of you who read this blog and our Facebook page at the MPN Advocacy & Education International conference on in Novi, Michigan, on Thursday, so let me get to those first, and then watch the blog for other entries for more info to come.

Your questions:

If you are CALR-positive, will ruloxitinib (Jakafi) work for you? Short answer is yes, from Dr. Kristen Pettit, University of Chicago. Don't ask me to explain the genetics, but tests show that this drug works on ET regardless of mutation type.

My self-improvement kick #4: The anti-inflammatory diet

Here's an anti-inflammatory diet food pyramid.
Notice that the bottom tier reminds you to drink
lots of water and that the vegetables are where you
usually find grains on a conventional diet. 

At today's MPN conference in Novi, Michigan, there was lots of talk about inflammation. An oversimplification is that inflammation is what makes us feel bad as ET patients. One of the experts suggested that an anti-inflammatory diet might be helpful for MPN patients like us. So I'm embarking on a plan to move in that direction in hopes it helps with energy levels.

I'm also hoping that the anti-inflammatory diet, which does not include dairy fats and red meat, might also help me reduce my cholesterol, which just tipped over into the "high" range yesterday at a total of 211 (even though the HDL and LDL are within allowable limits). Since high cholesterol increases your risk of blood clots, already a risk for me as an ET patient, I'm hoping the anti-inflammatory diet might also help me bring my cholesterol down next year.

And if helps me lose a little more weight, even better.

News of interest to ET patients

Pluto was kicked out of the list of planets in our solar system
the same year ET was reclassified as a cancer? Coincidence?

From time to time I like to post things I've read that relate to me as an ET patient. So here are some recent articles that might interest you, too.

Having trouble paying for meds? I learned from a fellow MPN patient about GoodDays, an organization comprised mostly of pharmaceutical companies, that will help patients like us with prescription drug costs.


Right now, all MPNs are on GoodDays's list of covered diseases, and commonly prescribed ET medications are listed in their formulary, including anagrelide (Agrylin), hydroxyurea (Hydrea), (ruloxitinib) Jakafi, and pegylated interferon (Pegasys).

Should Americans have to give up genetic info to their employers or pay more for their health care benefits? That's a what HR Bill 1313, Preserving Employee Wellness Programs Act, might do, as reported in the Washington Post.

My ZZ experiment

Itching (pruritis) is a troublesome symptom for some ET patients because, as PV Reporter David Wallace explains, the overproduction of mast cells results in too many histamines. It's like having hay fever all the time.

Wallace writes about the Zyrtec+Zantac (ZZ) treatment for his polycythemia vera itching, and I thought that I'd give this a try for a week for my own itching. My experience was mixed.

Here's more:

Budd-Chiari and ET

No, no, not Bud and chianti! It's Budd-Chiari!

In my last post, I talked about acquired von Willebrand syndrome in ET patients. Here's another acquired condition that ET patients are at somewhat higher risk for: Budd-Chiari syndrome (BCS)

Few ET patients get Budd-Chiari syndrome, but a large percentage of BCS patients do have an MPN, usually polycythemia vera, our sister disease, but a fair percentage also have ET. Because BCS is serious in patients who do develop it, it's good to know about. Treating your ET as directed by your doctor is your best defense against BCS, so if you already know you have ET and are following doctor's orders, you have a better chance of not developing BCS.

BCS is caused when the veins that flow to the liver become blocked, in our case due to our many platelets and tendency to clot. This is serious because it can cause the liver to shut down and can be fatal if not treated.

Patients with BCS may have upper abdominal pain, fluid in the abdominal cavity, or an enlarged liver that shows up on an ultrasound. Blood tests can help confirm BCS, and an MRI can show doctors where the blood flow to and from the liver is blocked. Heparin or warfarin, two common types of blood thinners, might be used to dissolve blockages to the liver. Sometimes stents are used.

There's probably more than you want to know in this 2004 New England Journal of Medicine article about BCS. But the pictures and diagrams are cool!

Be well!

Related: Von Willebrand disease and ET

Related: EM and the weekly poll

(This post covers another oddball condition associated with ET, erythromelalgia)

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von Willebrand disease and ET

I always imagine a character named
Count von Willebrand when I hear
about VWS. He would look something
like Fearless Leader from
Rocky and Bullwinkle.

As an ET patient, you've doubtless been told that both clotting and bleeding can be complications of our disease, and, like me, you've probably been stymied about this paradox. How can we be both clotters and bleeders?

For a small percentage of us, the problem may lie with the von Willebrand factor.

Without getting too technical, the von Willebrand factor is a bunch of molecules that helps control clotting in your blood. Some people are born with a deficiency in the von Willebrand factor, and they have what is known as von Willebrand syndrome (VWS). The chances of you having ET and being born with the even rarer VWS is close to statistical impossibility. In addition, if you had been born with VWS, you'd know it by now.

However ...

Meeting and advocating with my fellow "orphans"

Some of the many speakers at Michigan's Rare Disease Day
event in the Michigan State Capitol February 28.

Tuesday was Rare Disease Day around the world. Michigan's Governor Rick Snyder and our state legislature declared February 28 Rare Disease Day in my state, as a special event was held in the capitol building. I was there to gather some highlights, and I urge you to consider writing your elected representatives with a post-Rare Disease Day message.

Rare Disease Day is promoted by the National Organization for Rare Disorders (NORD). You can learn more about them in the link at right.

Our Michigan event was pretty small--about 80 patients with a variety of rare diseases, their families, friends, and caregivers. As I listened to the speakers, some patterns began to emerge that most of us with ET can relate to:

Diagnosing ET and scoring your ET risks

Back in April, the Cleveland Clinic added some updated info in handy chart form that might be useful to ET patients, including the scoring system used by clinicians to determine your prognosis. For those new to ET, this info may help you understand what tests your doctor will order and what factors they look at when they assess your risks.

Here's the first chart:

Diagnostic criteria for essential thrombocythemia

Current (2008) WHO criteria	Proposed Criteria
Major criteria
Platelet count ≥450 x 109/L Megakaryocyte proliferation with large and mature morphology Not meeting WHO criteria for CML, PV, PMF, MDS or other myeloid neoplasm Demonstration of JAK2 V617F or other clonal marker or no evidence of reactive thrombocytosis	Platelet count ≥450 x 109/L Megakaryocyte proliferation with large and mature morphology Not meeting WHO criteria for CML, PV, PMF, MDS or other myeloid neoplasm Presence of JAK2, CALR, or MPL mutation
Minor criteria
	Presence of a clonal marker (eg, abnormal karyotype) or absence of evidence for reactive thrombocytosis
Requires all 4 major criteria	Requires all 4 major criteria OR first 3 major criteria and 1 minor criterion

CML = chronic myelogenous leukemia; ET = essential thrombocythemia; MDS = myelodysplastic syndrome; PMF = primary myelofibrosis; PV = polycythemia vera; WHO = World Health Organization.

Groundhog Day and Simpson Oil

The local worthies pose with Punxsutawney Phil, in Punxsutawney,
Pennsylvania, which has one of the more famous Groundhog Day
celebrations in the northern United States. 

Happy Groundhog Day, everyone!

If you don't live in a wintry part of the U.S., you probably don't know or care about Groundhog Day. But the lore is that if the groundhog comes out of his hole and sees his shadow today, there will be six more weeks of winter.

Today is very cold, clear, and sunny, but I'm not prognosticating the end of the winter by it.

And neither am I publishing comments pushing Rick Simpson's cannabis oil as a cure for ET or Simpson's book, Phoenix Tears, or other unsubstantiated cure claims here or on the FB page.

Why your doctor doesn't think you have symptoms

Is this how your doctor looks when
you tell him you feel fatigued, have
headaches, have bone pain, or just
feel crappy? 

I've been at this blog and Facebook page for over a year, and ET patients commonly complain that their doctors don't believe they have symptoms ... even though our symptoms are pretty well documented in "the literature," as the scientists say.

In catching up on my ET reading, I have some theories about this:

ET patients are most often diagnosed in their 50s and 60s. The fatigue and aches that can be a symptom of ET may be waved away as age by both patients and their doctors. And, to cut the doctors a break, it can be almost impossible to determine whether our ailments are age or disease related.

Doctors may also be skeptical about our symptoms because we aren't complainers. I was struck by an MPN specialist in one of the many YouTube videos available about ET, who noted that his patients seemed to be asymptomatic before their diagnosis and then, after they learned they had ET, claimed to have ET symptoms. It was pretty clear that this doctor felt his patients were rather suggestible; they only starting having the symptoms AFTER they learned what the symptoms were. 

Incremental care and ET

Dr. Atul Gawande's article in The New Yorker
about "incremental care" should make all of
us with ET think about the care we need to
maintain quality of life ... and which health
care providers are most likely to provide it.

Dr. Atul Gawande has been making the media rounds recently promoting a concept called "incremental care," and I recognized at once that this is exactly the kind of care most of us with ET need more of.

Gawande notes that research and money tends to cluster around what he calls "heroic care"--months of the latest cancer cure, major heart surgery, organ transplants--the kinds of treatment needed to cure an acute problem and make it go away forever. As I researched Gawande's interviews and articles, it occurred to me that "heroic care" is the kind of care that spawns colored ribbons, 5K cure walk/runs, and singles out the brave "survivors." These "heroic care" efforts are great, and we all have friends and relatives who have benefited from them tremendously.

But we ET patients are never going to be "survivors." Barring an outright cure, we're all going to die with, if not from ET. So incremental care will continue to be an important part of our treatment, and I think we need to make sure that we get it by educating and enlisting our primary care physicians more.

2017 ET events

Happy New Year, everyone!

MPN Advocacy & Education has released its education events for 2017. Please note that there are several programs taking place around the U.S. and one in Melbourne, Australia, April 28. (I know we have readers from Oz here, so please spread the word.) I do plan to attend the program in Novi, Michigan, in March. So if you have questions you'd like me to take to the event, please post them here, or visit the FB page where you can message me.

Also, Rare Disease Day is coming up February 28. This is a worldwide observance, and there may be events happening in your area. Check it out at the Rare Disease Day home page. I do hope to attend Michigan's event this year. I missed it last year due to a combination of health and weather crises. (Planning things here in the Upper Midwest is dicey between December and April ...)

Shortly, I hope to come up with some ways for you to observe Rare Disease Day and impact lives positively in your area. So watch this space for details and ...

Be well!