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.

ET and pregnancy

Women with ET can have healthy babies, but they should be
aware of complications, risks, and whom to contact in the event
of an unplanned pregnancy.

While the typical ET patient is 50-70 years old, about 20 percent of women with ET are younger than 40, that is, within child-bearing age. Women with ET can have healthy babies, but ET does pose elevated risks for both mothers and fetuses that fertile women should know about and discuss with both their hematologists and gynecologists.

A link between ET and early miscarriage has been known for many years. A 2007 report in the Orphanet Journal of Rare Diseases, and a 2017 article specifically on ET and pregnancy in the Obstetrical and Gynecological Report offers this info:

Happy International Women's Day!

Happy International Women's Day! Enjoy
yourself. But drink that wine in moderation!

As you know, there are 1.5 female ET patients to every male--that is, about 65 percent of patients with ET are women. So, on this International Women's Day, let's take a look at some of the challenges women ET patients face.

Women diagnosed with ET in their childbearing years need to be aware that taking chemo can cause serious birth defects. However, interferon-based drugs such as Pegasys, may be taken without harming fetal life. Discuss this with your doctor! Anecdotally, younger women with ET who are not on medication may run a higher risk of miscarriage or experience more bleeding during their menstrual cycles.

Younger ET patients who hope to become parents should also understand that the ET is caused by somatic mutation, that is, one that is not passed along genetically.  But because ET (and other MPNs) seems to run in many families, researchers theorize that the children of parents with ET may inherit a sensitivity to developing ET later in life if exposed to unknown carcinogens in the environment.

Shingrix: Mild side effects are common, as I discovered

NOTE: If you are generally opposed to vaccines, this is your choice, you are free to opt out of treatments you don't want, and I support your right to do that. If you are interested in the Shingrix vaccine, read on. I won't entertain debates here about vaccines in general.

As you know, Shingrix is a killed-virus vaccine that helps prevent shingles. According to the American Journal of Managed Care, about a third of all people will get shingles if they have had chicken pox, and the risk seems to be climbing.  If you're on hydroxyurea like me, you're considered immune compromised, and that adds another shingles risk factor. 

Fortunately, Shingrix, unlike the old vaccine, Zostavax, is a killed-virus vaccine and so safer for ET patients. It's also much more effective (about 90 percent) in preventing shingles. If you're over 50, your family doc or hematologist has probably urged you to get the Shingrix vaccine.

In the past year, Shingrix was scarce because production did not keep up with demand. My family doctor explained with some exasperation that everyone who got the old shingles vaccine rushed to get the new one, which is more effective, and that created a run on the supply. So those of us who a) had not had the old vaccine and b) who are immune compromised and can't take Zostavax often had to get on a waiting list at the local pharmacy or clinic.

You may want to let your local pharmacist know that you have an immune compromising condition. Mine moved me to the "priority" list for when the vaccine became available. Recently, Shingrix makers ramped up production, and I got a call from my local pharmacist telling me that my number was up. I got my first shot Sunday. 

MDS and MPNs

MDS--myelodysplastic syndromes--are a group of disorders that cause "bone marrow failure." Basically, the bone marrow stops producing enough usable blood cells. I bring it up here because it is kinda, sorta related to myeloproliferative neoplasms, the family of cancers that includes ET, and ET MIGHT be a risk factor for developing MDS.

Before you freak out, read on ...