All Vaxxed Up and Nowhere to Go: Cancer Patients and the Whole Damn Dilemma

Each week, a growing number of people ask me if I’ve been vaccinated against COVID and, if so, which vaccine I chose.

With few exceptions, these folks—all living with cancer—tell me they are fully vaccinated, many having received a booster, too. Yet, they’ve had ‘zero response’—no measurable immune protection from COVID.

Recent studies (here and here) show approximately one in four blood cancer patients fail to produce detectable antibodies after COVID-19 vaccination. This is most prevalent in those hosting non-Hodgkin lymphomas and chronic lymphocytic leukemia, but also in those hosting multiple myeloma and other blood cancers.

Those hosting solid tumors and under treatment seem to be better protected than those hosting blood cancers. Many may have a similar level of protection, based on spike protein antibody response, as the general population.

The folks who ask the question about my vax status are invariably on a path to telling me what’s really on their minds:

“I am all vaxxed up with nowhere to go!”

“Should I continue to put my life on hold indefinitely because I got zero response?” (No measurable immune protection from the COVID vaccine.)

“I miss my kids, my grandkids, my favorite vacation spots… I’m tired of donning a mask and living a hermit-like existence between the four walls of my home.”

“I cannot comfortably return to work; my job involves kids under 12.”

“Why should I get a booster if I got zero antibody response after two jabs of an mRNA vaccine?”

“I am anxious, scared, lonely, and depressed.”

The people I hear from are not the only ones experiencing the effects of prolonged isolation and uncertainty; you, a loved one, or someone in your care may be in the same position.

The separation from our old ‘normal lives’ has taken its toll.

Questions and feelings such as the ones above can be incredibly difficult to answer and reconcile. They should be discussed with your oncologist and medical care team who may also provide referrals to therapists or psychologists who specialize in psychosocial oncology.

Certainly, no one should have to put life on perpetual hold. Each of us should take proactive measures to gain control and improve our outlook and resiliency to the effects of isolation. Let’s dig in, but first…

My Vax Status

It was relatively easy for me to stay protected since the onset of the pandemic—a supportive spouse, my working from home, our creating a home gym. I wanted to wait and see, but the Delta variant got my attention. I had seen enough and, after following the data to that point, was ready for the jabs. I am now fully vaccinated.

Even though no one knows what the long term effects of vaccination may be—say three, five, ten years down the road—yes, I was ready.

I’m still being careful. I had committed to do a talk in Austin, and looked forward to attending my first medical conference in almost two years. I timed my vax doses perfectly. Then Texas cases blew up, so I canceled my trip. Participation by Zoom would have to suffice.

I went with two jabs from Pfizer, mostly because it contains one-third of the active ingredients as compared to Moderna. Less is typically more in my book. But then, at exactly the two-week mark after the second dose, an Israeli study came out showing that the protection provided by Pfizer wanes fairly quickly over time—more so than Moderna’s. And now more data has come out that explains the differences in the two mRNA vaccines and supports the Israeli study results.

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Until recently we were in booster shot purgatory.

I was hearing, chronological order:

Everyone needs them.

Only those immunocompromised need them.

Healthcare workers, other first responders, and those in nursing homes, first.

No immediate need for most—even waning protection from vaccines still offer high protection from severe COVID requiring hospitalization which often leads to death.

Then the White House said ‘go’ and set a date. The FDA said wait, and set parameters for those older than 65 and others at high-risk. With further, ongoing review of the data, the recommendations for everyone over 12 will evolve, most likely resulting in booster for all… at some point.

At the time of this writing, it has been recommended that all individuals over 65 receive boosters.

Hey, following the science is great, but the Federal coordination of messaging remains, well, messy.

Unmet Need in the Age of COVID

As previously mentioned, we need accessible and affordable ways to accurately measure immune response.

More critically, we need better coping tools for so many who are feeling chronically stressed and incredibly desperate at this time.

The numbers of those diagnosed with mental health challenges have exploded during the pandemic. Literally, as we go to press with this post, a new study states findings of New-Onset Tics in Adults Tied to COVID-19 Stress.

This—the arrival of additional issues—has been especially true for those hosting a malignancy. COVID has introduced a whole new obstacle course to cancer management, treatment, and healing—and to achieving a sustainable high quality of life.

What We Can and Must Control

We must focus on overall resiliency and bolstering immunity by incorporating and consistently following sensible lifestyle approaches. Humans are accomplished socializers—we need to be with each other. To the extent possible, based on each person’s situation, we must take control of our positive ‘health creation’ actions.

‘Independence is not the same thing as ‘loneliness’; neither are the same as isolation. Yet, loneliness and isolation have negatively impacted the lives of many—never to such a degree prior to the arrival of COVID. There are so many unknowns, which is why we need to be encouraged to up the ante on resiliency strategies, and create opportunities for wellness activities.

Focus on a plant-strong diet, hydration, sleep, key immune supplementation, and exercise (get outside and move—and lose the mask if you are distanced from others!). Rekindle social connections lost during the pandemic. Get creative: if you don’t Zoom, then phone, write, email, DM via social, send smoke signals… do something to benefit from connection—then do your best to stay connected.

Revisit all you might incorporate to help reduce stress, anxiety, depression. There is no one-size-fits-all to any of these activities. One person’s deep breathing exercises are another person’s deep meditations or walks in  nature.

Becoming a horrible host to cancer incorporates sensible, proven actions needed to help avoid the worst of COVID, or to be better positioned in the event it pays you a visit. Just add vaccination, distancing and masking.

It comes down to asking the right questions to your oncology care team including about testing for immunity and discussing the value of boosters.

Measuring Vaccine Antibody Responses

What we know: while there are advances seemingly each week, the commercially available, FDA approved test (covered by Medicare and insurance) for measuring COVID-19 spike protein antibody response simply shows if antibodies are present or not.

This means: folks who are told they got an immune response from a vaccine, or from natural immunity, may not be adequately protected.

Personally: I would want to quantify mine—before and after a booster—even if it required out-of-pocket payment.

The current reality is: until there are universal standards established for calibration of assays, and what levels of antibodies are protective for a given individual, many will still be all vaxxed up with no place to go.

Though there is a viable test available—which I discuss in the section Carefully Living Your Best Life—an abundance of caution is still required for those who are immunocompromised.

To make things even more confusing for patients and oncologists, in May 2021 the FDA issued a safety notification stating the following (paraphrased; bold emphasis is mine):

The U.S. Food and Drug Administration (FDA) is reminding the public and health care providers that results from currently authorized SARS-CoV-2 antibody tests should not be used to evaluate a person’s level of immunity or protection from COVID-19 at any time, and especially after the person received a COVID-19 vaccination.

While a positive antibody test result can be used to help identify people who may have had a prior SARS-CoV-2 infection, more research is needed in people who have received a COVID-19 vaccination. Currently authorized SARS-CoV-2 antibody tests have not been evaluated to assess the level of protection provided by an immune response to COVID-19 vaccination. If antibody test results are interpreted incorrectly, there is a potential risk that people may take fewer precautions against SARS-CoV-2 exposure.

Recommendations for People Who Had or May Have a SARS-CoV-2 Antibody Test

  • Be aware that SARS-CoV-2 antibody tests help health care providers identify whether someone has antibodies to SARS-CoV-2, the virus that causes COVID-19, indicating a prior infection with the virus. However, more research is needed to understand the meaning of a positive or negative antibody test, beyond the presence or absence of antibodies, including in people who received a COVID-19 vaccination, in people who have been exposed and have SARS-CoV-2 antibodies, and in people who are not fully vaccinated.

Should every cancer patient, and especially those hosting blood malignancies, be tested for a spike protein antibody response from their COVID vaccines? I would argue yes.

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If the results show ‘zero response’ after two shots, or two shots and a booster, how do we act on this? Therein lies the dilemma. We are still learning.

Measuring T Cells for Vaccine Immune Response

We also know that T-cells play a critical role in defending us against pathogens like COVID, and may be as important as the antibody response.

There are concerns about variants being partially unthreatened by antibody defenses. ‘Killer T cells’ could boost COVID immunity in the face of these new challenges.

Vaccine development is focused on antibodies, and rightly so. They bind to crucial viral proteins and block infection—reducing severity and preventing  disease.

Antibody vaccine development is the gold standard.

Killer T cells, on the other hand, seek out and destroy cells that are infected with the virus. While ‘helper T cells’ are important for various immune functions, including the stimulation of and production of killer T cells and antibodies, T cells do not prevent COVID.

Interesting to note, a recent emergency use authorization has been granted for a new T cell assay used to test for COVID.

More intriguing is a simple test in development to rapidly assess T-cell immune responses in people vaccinated against or recovering from COVID, and verify vaccine effectiveness.

[A deeper dive on T cells and COVID can be found here.]

Accessing Proven Monoclonal Antibody Therapies

If you have been tested for COVID spike protein antibody immune response and have been told you are unprotected, then it would be smart to identify proactive options that can be put in place should you contract the virus.

Enter the monoclonal antibody option. Monoclonal antibodies make proteins that mimic the immune system’s ability to fight off harmful pathogens such as COVID. If taken early enough in the course of disease, they can greatly lessen the deleterious impact of infection.

Accessing Regeneron’s REGEN-COV monoclonal antibody cocktail at a facility not overwhelmed by COVID patients is critical. But, since shortages have been reported, it is advisable to make sure there are multiple clinic options that can accommodate those at high risk, if they contract COVID.

In addition to REGEN-COV, the U.S. Food and Drug Administration has also granted Emergency Use Authorization (EUA) for other monoclonal antibodies treatments, including Bamlanivimab (Eli Lilly), the combo therapy Bamlanivimab/Etesevimab (Eli Lilly).

Use this search tool to see where you can get monoclonal antibody infusions close to home.

In Case You Do Land in the Hospital…

Make sure to advocate for remdesivir, immediately. New studies are being published weekly—again, at the time of writing, a new one shows remdesivir reduces hospitalizations by a stunning 87% in high-risk patients diagnosed early in the disease. Remdesivir may well be standard of care for COVID in a hospital setting, but leave nothing to chance, especially given how overwhelmed COVID wards can be. You must proactively advocate for yourself.

More Variants & More Pathogens Ahead—Plus Measles and Mumps

Today it’s Delta and a host of COVID mutations floating around, but we are all but guaranteed to be dealing with entirely new pathogens of varying degrees of impact as time marches on. And if you are hosting a malignant disease, you need to be aware that you may be unprotected  for measles and mumps.

Carefully Living Your Best Life

One of the key points from the May 2021 FDA safety notification above is:

“If antibody test results are interpreted incorrectly, there is a potential risk that people may take fewer precautions against SARS-CoV-2 exposure.”

It’s true, we don’t know exactly how to interpret the ‘level of protection’ conferred by an antibody response. But just the same, for those who are immunocompromised, it’s not enough to only know if the response is positive or negative. They need an actual number. It so happens a test exists for this—it’s called SARS-CoV-2 Semi-Quantitative Total Antibody, and costs under fifty dollars. Disclaimer from the lab:

“Values generated with this assay cannot be used to determine whether or not an individual has developed protective immunity against infection and cannot be directly compared to other assays until a universal standard is established for assay calibration.”

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If I am getting a booster, which can supposedly increase antibody response exponentially—ten-fold—then I’m opting for a test showing a quantifiable baseline and post-booster outcome… while still waiting for the science to catch up to tell me what these numbers definitively mean.

Because each one of us is unique, the host environment we provide for protection from disease differs from person to person—and can change over time depending on our actions. Also unique to each individual is the malignant disease we may be hosting—and the combination of protection from pathogens, including COVID, that our whole system has created.

Additionally, and critically, we differ from each other in our level of resources—access to physicians, accurate information, financial wherewithal to obtain various forms of support.

We are each an N of 1—an experiment of one.

Now, more than ever—especially those living with cancer and feeling isolated—we need to be proactive and careful in our decision-making. Just as many challenges and, hopefully, substantive solutions lie ahead. We can each support the latter by focusing on physical and emotional health creation through wellness activities to strengthen our immunity, resiliency, and social connectedness.

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