Practical tips for ET patients and COVID19

ET patients hoping to stay health should continue to practice social distancing , get fresh air and exercise, have a mask and hand sanitizer when out,  maybe take a multivitamin, and not worry excessively. ET patients who do get sick should get tested for COVID19 and contact their hematologists.

That was the bottom line advice for MPN patients Drs. Ruben Mesa and Aaron Gerds at a Webinar session Tuesday. The session was sponsored by MPN Advocacy & Education International.

Coronavirus and cancer patients

Clean hands are safe hands! Wash hands frequently
to help prevent the spread of infectious diseases!

UPDATE, April 1: More specific info on C19 and MPNs from Drs. Ruben Mesa and Robyn Scherber here.

ET patients MAY be at higher risk for coronavirus than the general population. What does that mean exactly? It means that we may get the virus more easily or become more seriously ill if we do. That's because those on oral chemo are considered immune suppressed, and that makes it generally harder for us to fight off infections.

The Leukemia and Lymphoma Society has some brief guidelines and info specifically for blood cancer patients about corona virus.

But there's a lot we don't know about coronavirus, and the most important thing you can do for yourself and loved ones is to keep a clear head and not panic. The next most important thing is to stay informed. Here are some tips:

New book for MPN patients a mixed bag

Living Well with an Myeloproliferative Neoplasm by Dr. Krisstina Gowin is a new book--it may be the ONLY book--aimed at helping MPN patients understand and "live well" with our uncommon cancers. Is sells on Kindle for about $10. It's probably a very good resource for people who are just diagnosed. It can help you get your thoughts together and provides some good medical explanations that you probably won't get from your hematologist. But the book has some down sides. Here's my review:

My CBD disappointment

CBD oil: It's sold everywhere. But not all products are of
equal quality, and they may not help some people. CBD
can also create unwanted problems. Proceed with CAUTION.

The short version of my experiment with CBD oil is that it did not help me sleep, did not reduce restless leg syndrome, and did not reduce anxiety, common complaints among ET patients. CBD oil also seemed to worsen my acid reflux

Here's the longer version:

I was interested straight CBD, that is cannabidiol without THC. THC, as you may recall from your college days if you are of a Certain Age, is the substance that makes you giggly, red-eyed, and want to eat Cheetohs.

Signing up for Medicare

It's Elder Me getting ready to
sign up for Medicare!

I'll be 65 in September, and that means it's time to deal with Medicare, the government health insurance program for the elderly here in the U.S.  And much as I cringe to think of myself as "elderly," I have to remember the alternative.

Anyhow, here's my "first dive into Medicare" report. This is just a record of my experiences, and NOT MEDICARE ADVICE!!

The government knows your birthday, your income, whether you've been naughty or nice, and the folks at Medicare will automatically send you your Medicare insurance card before your 65th birthday. Everyone has to be enrolled in Part A, and you are automatically enrolled in Parts A and B (which together make basic Medicare) without having to do anything. If you're dropping out of Part B because you have retirement health care coverage from an employer, union, or professional association, there's info on the card that tells you what to do.

Thinking about skin and ET

Ummm. Balmy and sunny (all night) in Reykjavik,
Iceland. ET patients: Don't forget to take your
sun screen!

My summer here at north latitude 45 around the Great Lakes has so far been unseasonably rainy and cold. In fact, right now it's 55 degrees with a cold drizzle. That means the weather is actually better in Reykjavik, Iceland, where it is 59 and partly sunny (and will be for the next 24 hours because of the Midnight Sun). It's also 63 in Fairbanks, Alaska, and a sweltering 67 in Yellow Knife, Northwest Territories of Canada.

Thanks a lot, Gods of Weather. I hate it when it's hot and humid, but no need to be sarcastic.

But never mind my digressions and resentments of people getting better weather far to the north of me. Today's topic is ET and skin cancer. This comes up fairly frequently among people who read the info that comes with their hydroxyurea, which warns that it may cause skin cancer, and become worried about sun exposure. So I did some digging, and I hope this info will encourage you to talk to your doc about this. Here's what I found:

How to bird-dog your doctor

Bird dogging is a communication technique people
are using with weasel-y politicians. It could help
you communicate better with your doctor!

This week, I heard a radio bit about people learning to "bird dog" politicians in order to flush out their true opinions about issues instead of just letting them ramble on with a lot of canned and meaningless statements. I instantly realized that this was a technique we might use with our hematologists, who are often stymied by ET and give us frustrating non-answers.

Anyhow, good bird-dogging requires four things:

1. Be non-confrontational. You may think your doctor isn't doing a great job or ignoring your questions because he or she is not very well informed about ET. If that's so, getting a second opinion should be on your to-do list. The MPN Research Foundation has a good resource page to get you started if you're looking for a new doc. You won't get anywhere with your current doctor if you have a chip on your shoulder.