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: