ET and covid booster vaccines

NOTE: Vaccination is a personal decision. I chose to be vaccinated, and I am not going to argue this decision with others. Comments of a non-factual nature that spread fear and misinformation about the vaccines will not be published. 

Good news from the docs this week! Like everyone else in the U.S., I have been hearing that cancer patients should be getting a booster shot as soon as possible because of their compromised immunity. But even as an ET patient, you may not need to get a booster right away. I was happy to learn from my hematologist that I'm not as decrepit as I thought, and I can wait the full eight months before getting a booster, just like a "normal" person! 

HOWEVER: Hydroxyurea can affect immunity, as the info sheet reminds you every time you get your prescription refilled. So don't assume that the advice I got will be the same for everyone. Let your hematologist make that call for you. 

I emailed my doc about the booster. One thing the pandemic has made much easier is communication with the hematology office. I usually get an answer within 24 hours for a non-urgent question, and the hematology oncology office has laid on a new nurse practioner to deal with just this type of issue. So the same day I asked the question, the nurse looked up my last blood draw results and decided that I should wait for the booster based on several immunity markers, including white blood count. 

My platelets swim around in the 400-450 range and none of my other blood counts are in the high or low range. I take a relatively low dose of hydroxyurea--500 mg per day plus an extra 500 mg on Mondays, Wednesdays, and Fridays. Those taking higher doses of HU or with blood counts that run high or low may be at different immunity levels, so let the hematologist make the call about a booster for you. This isn't a decision you want to freelance. 

Also, as my hematologist's office reminded me, wear a mask when you are indoors with people whose vaccination status you don't know whether you are vaccinated or not. I know it's a drag, but delta variants are up in my area, and there are more reports of vaccinated people getting sick. 

And while we are on the general topic of wellness, seasons are turning, but there is still plenty of good outdoor weather in both the Northern and Southern hemispheres. Please remember that some ET medications, including HU, can increase your chances for skin cancer. So carry that sunscreen around with your mask! And remember to drink lots of water. Be well! 

Related: Vaccination roulette 

Related: Practical tips for ET patients and COVID19 

Related: Thinking about skin and ET 

Home

ET patients deserve better!

My husband and I celebrate a recent

wedding anniversary.

My husband had a heart attack last week. Technically, it was an acute myocardial infarction, which means he was stricken with chest pain in the parking lot of the Home Depot while loading up some sheets of plywood at 11:45 a.m. He drove himself to the nearest ER, and by 4:30 p.m., he had been taken on an exciting ambulance drive to the big regional hospital, had a stent inserted to clear an artery that was 95 percent blocked, and was eating a pudding cup and feeling no pain.

All of this came out of the blue, and of course we are deeply grateful to the quick thinking of emergency personnel, cardiac catheter lab staff, and the doctors and nurses in cardiac care. 

But we couldn't help comparing the care he got to the care ET patients are offered. It certainly revealed holes in the care most of us ET patients receive. For example:

Vaccination roulette

Health department nurses distribute oral        
polio vaccine ca. 1960.

I have an appointment with a chain pharmacy here in Michigan to receive my first dose of one of the COVID-19 vaccines on March 9. I don't know whether I will get the Moderna or Pfizer vaccine. There isn't any way to choose; you take whatever vaccine the vaccination site has.

Having an appointment for a vaccine, of course, is not the same as actually getting the vaccine. Lags in vaccine production, shipping delays due to weather, difficulty ensuring that there are enough people trained to administer the shots--all of this has created problems in vaccine distribution here in the United States. 

In addition, state and local health departments had to create a network of vaccine distribution sites for people in each locale, and this took time.  Like a lot of people over age 65, I remember the 1960 distribution of the oral polio vaccine and couldn't help comparing that effort to the one going on now. In our town, people were directed to their local polling stations on a given day. There, the public health nurses gave us sugar cubes with the vaccine on it. I remember teasing my younger brother that he would have to get his via an eye-dropper because, at age 4, he was still a baby. 

Seven wishes about ET

In the six years since I started writing this blog, I've talked to hundreds of ET patients online here and through my Facebook page. 

Besides sharing our ET diagnosis, we all seem to share some common wishes as ET patients. So I thought I'd start out 20201 by offering the seven things I wish about ET that I think I share with most of you: 

Wish 1: I wish that health care providers understood that lack of information is the worst "side effect" of having ET. I hear something like this from a lot of my fellow patients: "I was just diagnosed with ET, and my doctor says he's not worried about it. But then I read online that I have cancer! I am really scared now!" Please, health care providers: Five minutes of clear, brisk info and a fact sheet would go a long way toward  helping us better understand our disease.