(Originally published June 24, 2022)
Update: According to the oncologist and my most recent labs - I am no longer generating cancer cells.
It appears that I am responding very well to the Zanubrutinib.
The only unusual side effect is spotting when I shave my legs or scratch an itch. No pain. The reaction is a reminder to stay careful and not inadvertently stab, poke, or cut myself. The only other thing I'm noticing is that I am still mentally crashing - especially in the afternoon.
Otherwise, I'm feeling pretty good. I am up to 5000+ steps per day without tiring. I can do 30 minutes of moderate yoga. I just need to keep nudging the pizza dough and not get too far ahead of myself.
The only downside to all of this - I can't have sushi, carpaccio, or raw oysters. Three of my favorite things. I had hoped my doctor would tell me otherwise...
Because I am physically feeling better, Ryan and I took a vacation from Cancer World. Hence the lack of updates. I didn't want to think about all of this for a couple of weeks. Frankly, there's a lot to process for both of us. The chance in scenery also did me some good - even if I didn't do very much other than eat, sleep, and walk on the beach.
That time was both unexpected and badly needed. It is nice to be able to go places other than the hospital and the oncologist's office.
A few weeks ago, I received notification from the Commonwealth of Virginia that I am eligible for another booster. They sent this automatically since I am now in the over 50 cohort.
Typically, getting the booster would be a no-brainer for me. With most of my career being spent in health care and higher education, the annual flu shot was just part of my general maintenance. I've been treating the COVID vaccines and boosters like the annual flu shot.
Cancer changes the calculations.
First, the medications that I am on reduce the immune response these shots have.
Second, I had concerns about interactivity with the Zanubritinib.
Third, I was scared that the immune response from the shot would do more harm than good.
Thankfully, since mid-May, the guidance is providing more clarity around whether I should go get the shot.
- I received the one dose J&J shot as soon as I was eligible in 2020.
- My first booster was the Pfizer shot - received last fall.
- I fall under the "Been receiving treatment for tumors or cancers of the blood" category of immunocompromise. My numbers are OK for now, but I need to be careful + I am still under active treatment for as long as I am taking the Zanubritinib.
US Centers for Disease Control (CDC): Over the past month, they have clarified their guidance and strongly encouraging the boosters.
I talked to both my oncologist and to one of the pharmacists at Biologics (the specialty pharmacy where I get the Zanubrutinib) - both said that the vaccine "wouldn't be a bad idea." This was also with the caveat that it wouldn't necessarily protect me from getting Covid. "It might make it less severe for you, you should probably get it." At the time, the research was less clear and the guidance from the CDC was wishy-washy.
The Patient Story did an excellent interview with Dr David Nguyen, an infectious disease specialist at the University of California, San Francisco. At the 12-minute mark, he talks about considerations for those of us who fall into the "immunocompromised" category. The whole interview is worth listening to.
I received my second COVID booster (Pfizer) on June 23rd. So far, no symptoms other than a sore arm.
At this point, I see the booster shots as a way to minimize any response I have if I get exposed vs. "prevention." I'll take any tool in the scientific arsenal I can get.
There is a new drug out called Evushield that is under Emergency Use Authorization in the US. Evushield is designed to help those who either won't mount an appropriate immune response with the current vaccines OR can't take the current vaccines due to allergies.
Right now, I'm working with my oncologist to get a prescription. I think of this as a booster to the booster.
The US Government has put together a special Therapeutics locator for Evushield, Paxlovid, and other upcoming Covid Therapeutics. COVID-19 Public Therapeutic Locator | HealthData.gov.
- US Government Free Home Tests - The US Government is providing free at-home COVID tests for households. We are using these as our first test. They are fairly simple to use as long as you follow the step-by-step instructions exactly.
- US Health and Human Services Test-to-Treat Locator - We are going to leverage this tool if the at-home test comes up positive. I need to be extra vigilant for symptoms since the anti-viral works much better as soon as symptoms appear.
- US Government Vaccine Locator - vaccines.gov. Many city and county governments are still hosting vaccination drives. Check your local government's COVID-19 information page.
- Johns Hopkins Coronavirus Dashboard (US + International COVID Data) and US Center of Disease Control COVID Data (US by State)