ET? Tell your kids and siblings

Inherting a predisposition to ET doesn't
work in a predictable way, like
the yellow/gray genes in cats. At this time
there is no way to predict whether close
relatives have inherited a predisposition
to ET. And inheriting the predisposition
does not mean someone will develop
ET.

  

Rare Disease Report covered a study in August of this year that showed immediate relatives of ET patients have a 7 percent higher chance of getting an MPN than the general population. Those with a parent who was diagnosed with an MPN at a young age might be at a higher risk.

I wrote about the "diet coke and mentos" theory of ET genetics a couple of years ago, so the study shows more statistical evidence for that theory.

If you spend much time in MPN support groups, you will learn that many patients report they had a grandparent, parent, or sibling with an MPN.  Not all family members had the same MPN; remember that the mutations that cause ET can also cause myelofibrosis or polycythemia vera.

Hydroxyurea Adventure: The first nine months

There's me earlier this
summer, feeling pretty good,
all things considered.

I had my yearly hematologist's visit at the end of October, and Dr. Blood was happy to see a steady downward trend in platelet levels (down from about 800 to 550), and that I have no anemia or any other levels that are of concern.

My MCV/MCH were slightly elevated, which the doc says is a function of being on hydroxyurea, and this isn't something to worry about. She said to think of it as a marker that simply indicates I'm taking HU.

Since starting on the HU, I have had no digestive upsets or hair loss (though you can see in the photo at left that I was cutting my hair short just in case).

So all of that is good news.

The not-as-good news is that Doc told me to take two extra HU capsules twice a week to more quickly nudge the platelets into the normal range.

Thoughts for this Veterans Day

Today is Veterans Day (Armistice Day or Remembrance Day if you live outside the U.S.). This year, it marks the 100th anniversary of the end of World War I.

Once in awhile, I like to post something that's not about ET to remind us that, even though we have a chronic illness, we are still alive and still have the capacity to engage with the human condition, past and present. Maybe that's what we were put on this earth to do. 

So here are some thoughts on this special Veterans Day.

That's my grandfather, Corporal Clinton Foster, in the photo  at left. My grandmother, whom he would marry a few years later, dressed in her best summer whites, is standing at far left with his sisters. 

Grampa enlisted in 1917 and served Stateside during the war in the mailroom. 

His brother-in-law, my great-uncle Martin Keehn (his future wife, my Aunt Mary, is in the photo in the black hat at right), would be sent to France and serve out the war in a trench. Uncle Martin received a Purple Heart for wounds he received in battle. He would never speak of what he had seen.

Jakafi/lymphoma link?

Lymphoma News Today has a more about the Jakafi-
lymphoma link. 

Many of you have been hearing about a possible link between Jakafi (ruxolitinib) and an aggressive form of lymphoma. In two European studies of MPN patients, a significantly higher number of those those receiving Jakafi developed an aggressive form of lymphoma than those receiving another drug. This means that doctors should proceed with caution when prescribing this drug. 

Jakafi was first approved by the U.S. Food and Drug Administration for myelofibrosis patients in 2011. Jakafi was approved for polycythemia vera patients a few years later. It is not yet officially approved for use in ET patients, but some doctors prescribe it "off-list" if ET patients aren't responding to hydroxyurea or anagrelide (trade names Hydrea and Agrylin). 

Probiotics! Are they good for you?

I have lived through a variety of health fads, so color me skeptical of the hot new thing. One of the latest is probiotics, a group of substances that are supposed to be helpful for all kinds of bowel ailments as well as allergies, tooth decay, colds, etc.

Some people also take probiotics following a course of antibiotics, in hopes of restoring "good" bacteria to the gut.

According to the National Center for Complementary and Integrative Health (a division of the U.S. Department of Health and Human Services), more research needs to be done on probiotics before anything definitive can be said about their efficacy. Their page is really helpful.

I eat yogurt a few times a week because I prefer to get my calcium from food rather than pills and because I am mildly lactose intolerant. (Yogurt in small amounts doesn't bother me.) Yogurt contains lactobacillis, one type of probiotic. (Bifidobacterium is the other.)

I have never had ill-effects from lactobacillis in yogurt. That's because eating yogurt or some other fermented food that naturally contains probiotics is not the same as frontloading these substances through supplements, which usually give you a megadose.

If you are thinking about taking probiotics supplements, be aware that they may cause unwanted side effects such as infections in people with weakened immune systems--and that includes any of us taking chemo like hydroxyurea.

Bottom line: I'm not trying to create a scare here, only urging you to talk to your doctor before you start taking any supplements. Be ready to explain why you think the probiotics would help you and discuss dosing.

Meantime, enjoy your yogurt and be well!

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Related: Natural treatments and ET

MPN "specialists" and support groups

Things you hear about MPN "specialists" and other ET-related
issues on social media (including this blog) are usually things
you need to learn more about and discuss with your doctor. 

If you follow online support groups for people with ET or MPNs generally, you'll eventually encounter people who urge everyone to see an MPN specialist. Often, when people complain about their doctors, the first question others will ask is, "Is he/she an MPN specialist?"

I've been following these conversations for over a year, and I think we need to understand that there is no such thing as an MPN "specialist," and that things we hear in support groups (or on this blog that you're reading right now) are things we need to learn more about.

Chronic cancer in the workplace

ET fatigue and other symptoms can create problems for
workers with chronic diseases.

How many people reading here have quit working, taken early retirement, changed to less stressful jobs, or cut back work hours due to ET? I've done All of The Above. And I'm not aone.

The MPN Research Foundation shared a story from the Minneapolis Star Tribune about the plight of acute cancer patients for whom Americans with Disabilities Act protections are inadequate. The story touches on the complex problems cancer treatment poses for workers and employers: Some workers come out of cancer treatment unable to do their jobs, some workers need more than the 12 weeks of unpaid leave the ADA offers, and some patients are fired at the end of their leave period, losing their health care insurance. This can be financially disastrous for patients who want to work, but it's also difficult for employers who have obligations to meet, and have to hire interim help or train new employees.

Working is even more complicated for chronic cancer patients like those of us who have ET, especially younger ones. Federal work leave requirements allows us to take time off to get used to a new chemo or medication. (I took a week off work when I started hydroxyurea. Even though I was only working part-time by then, my employer was very supportive.)