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The rain poured down as my husband and I nervously sat in the COVID-19 vaccine drive-thru. The nurses wore ponchos as they scurried around our vehicle to gather information and prep our arms. Five minutes later, the coveted “jab” officially happened. We cried happy tears on the way home. Because I am a cancer patient with a low white blood count (neutropenia in medical speak), getting the coronavirus vaccine felt like a literal lifesaver.

My husband asked, “So, can we go back to normal now?”

“Absolutely not,” I replied.

Indeed, nothing about our everyday life has changed. We’re still wearing masks, keeping to our bubble, and washing our hands repeatedly. Here’s why.

Getting the COVID vaccine while immunocompromised

It’s a known fact that cancer patients and immunocompromised individuals are at higher risk of contracting COVID-19 and dying from it. Studies from around the world found the fatality rate for infected cancer patients varies widely. Some studies find it falls 3% and 60%. Others say it’s between 13% and 28%. In either case, it’s greater than the 1.8% fatality rate of all COVID-19 patients in the U.S. Not to mention, the first COVID-19 vaccine trials mostly left out cancer patients and those with compromised immune systems, leaving a question mark around their efficacy in our specific bodies.

“We don’t have enough data for cancer patients [in regards to efficacy],” explains Rohit Gosain, MD, a hematologist and oncologist at UPMC Hillman Cancer Center in Pennsylvania, who conducted a comprehensive review of the virus’s effects in cancer patients. “But we know when cancer patients get COVID, they tend to have more side effects, they are in the ICU longer and have higher mortality rates.”

For these reasons, Dr. Gosain encourages his patients to get the vaccine, even though it may or may not offer the same protection as in the general population. (The National Comprehensive Cancer Network concurs that cancer patients should be vaccinated, with only certain exceptions.) But, he reminds them to keep practicing COVID safety rules. “Even at 65%, 75%, or 80% efficacy, it’s better to have some protection versus no protection at all,” Dr. Gosain says.

Indeed, for those of us who are immunocompromised, the global pandemic has brought on an added layer of anxiety and fear the general population may not experience, thanks to the greater risks we face.

Why precautions are still necessary

But according to the experts, the vaccine is not a one-way ticket to normal-town—at least not yet. While the vaccine absolutely offers hope from contracting serious illness or death (hooray!), we still need to do our part to protect ourselves from getting COVID at all. In fact, even for people without cancer, the U.S. Centers for Disease Control and Prevention (CDC) recommend that you continue to wear masks and practice social distancing when in public and visiting unvaccinated people even after you’re fully vaccinated.

“In cancer patients, there’s not going to be a vaccine response like a normal person, it’s not as robust,” says Ankit Madan, MD, an oncologist and hematologist at Sovah Cancer Center in Virginia, who also published a paper on clinical outcomes of COVID-19 in cancer patients.

As experts explained to me, the lack of data on vaccine efficacy in immunocompromised individuals and cancer patients means we have to err on the side of caution. “What I’ve been advocating,” says Dr. Gosain, “is to please continue on with the guidelines of social distancing and mask wearing, even after vaccination.”

New research may back up the “cautious” approach set forth by the oncologists and medical experts I spoke to. Researchers at King’s College London will soon publish the very first data on vaccine efficacy in immunocompromised patients, based on a real-world study in the UK of 151 cancer patients and 54 healthy controls.

In that study, which is in pre-print and has yet to be peer-reviewed, the researchers found that after the first dose of the Pfizer vaccine, only 39% of cancer patients showed vaccine response versus 97% in healthy individuals. “Our data clearly show that until [cancer] patients have had their second dose they are largely unprotected,” explains Sheeba Irshad, Ph.D., a lead researcher on the study and senior clinical professor at King’s College London. One more reason to keep social distancing and mask-wearing, especially in between doses.

But don’t panic yet! The researchers found that after the second dose, vaccine response increased dramatically, nearly matching the healthy volunteers. Which is good news all around.

“Cancer patients have a lot going on that can cause their immune system to be suppressed so it is not surprising that they might take a little longer to respond to the vaccine and need the added help from the booster,” explains Irshad. For that reason, Irshad and her team recommend that cancer patients receive the second dose on time—i.e., 21 to 28 days (depending on which vaccine was received) after the first dose.

My vaccination experience

After receiving the second dose of the vaccine, I experienced chills, body aches, and slight fever. Other common side effects that you might experience include:

Pain, redness, or swelling in the arm where you got the shot
Tiredness
Headache
Muscle pain
Fever
Nausea

I took my reaction as a sign of an immune response, despite my low white blood count. But with all the unknowns about efficacy, I still don’t want to risk contracting COVID—which is why I continue to wear an N-95 mask everywhere, social distance (meaning, no visits with members outside my household), and frequently wash my hands.

According to experts, all immunocompromised persons who received the vaccine should do the same. “Wear a mask in a public place, stay in your bio-bubble, and social distance” says Dr. Madan, who adds if you’re planning a trip to wait until late 2021 or even 2022. “I don’t recommend international travel right now, especially for cancer patients, even if they’re vaccinated.”

The recommendation is mostly the same for people who aren’t immunocompromised. The one caveat is that fully vaccinated people may gather indoors without a mask with other fully vaccinated people in small groups—or with one unvaccinated household of low-risk friends or family. Recommendations against large gatherings and international travel are still in place post-vaccination.

Despite my life staying exactly the same as pre-vaccine, there is one major difference: my mental state. The crippling fear and anxiety around COVID-19 has dissipated. I no longer feel like contracting the virus would be a death sentence. That’s not only a huge bonus, but it stirs up a sense of gratitude in me for all the researchers and scientists who brought this medical technology to life. Not only that, the more people who are vaccinated the safer we all are, whether we’re immunocompromised or not. For that reason, I am extremely hopeful for the future.

If you’re searching for a vaccine appointment without any luck, try vaccinefinder.org. Created by Boston Children’s Hospital and supported by the CDC, it can help you locate available doses near you.