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.