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Filtering Out EBV Noise

Date: July 14, 2024

This is an effort to reduce the “noise” we seem to have generated in some of the Internet chat rooms after the publication of our article The Enemy Within. It’s not really all that complicated, if you will just sit down and read.

Epstein-Barr virus (EBV) is transmitted through saliva. Sure, married people can transmit it to each other, since presumably they kiss each other. But you can also get it from a slobbery smooch from your five year old grandchild. Roughly 50% of kids that age have already been exposed to the virus. Kids that age and younger are constantly putting things in their mouth, and one Leggo block chewed on by one infected kid can then infect every other kid in the day-care center who subsequently proceeds to put it into his / her mouth. This is not rocket science folks - we do not have to imagine all sorts of funky sexual practices to explain the very high percentage infection rates of this virus in our population (around 95%).

For the vast majority of people, exposure to the virus goes by unnoticed. No symptoms, no problems, nothing. But they will continue to harbor a residual colony of the virus in their bodies for the rest of their lives. A functional stalemate is declared between the virus and your immune system. The virus never goes away completely, but it does not get to rule the roost either.

A small percent of the people infected with the virus go on to develop full blown symptoms of infectious mononucleosis (IM, or “mono” or “glandular fever”). The usual symptoms are swollen lymph nodes, general feeling of malaise and mind numbing fatigue that can last anywhere from a few weeks to a few months. Since other bugs can also cause the same symptoms, this is the point where the patient is actually tested for the EBV virus. Our article “The Enemy Within” deals with the additional risk factors that may be present in CLL patients that have had clinically diagnosed, EBV-caused infectious mononucleosis. It does not count if your roommate in college had mono, or if you had a couple of weeks of feeling very tired as a freshman but no one quite identified what was the problem (Too little sleep, too much pizza and junk food?) A generic diagnosis of “glandular fever” is most often not good enough either, since other viruses besides EBV can cause swollen glands: an example is cytomegalovirus or CMV. The research we quoted is pretty specific: patients with clinically diagnosed, EBV-caused IM had very long term T-cell deficits.

Because most of us have been exposed to the EBV virus, there is not much point in testing for it in asymptomatic patients. Chances are about 95% that you will be positive and that does not tell us anything you did not know before the testing. If you have not had clinically diagnosed, EBV-caused infectious mononucleosis, it is of no consequence that your blood tests positive for EBV exposure. So there is no reason to bug your doctor into ordering a test for the EBV virus now.

The reason why this topic may be of interest to us: our straw poll on CLL Topics (admittedly unscientific and statistically invalid, we never claimed otherwise) came up with a staggeringly high number of CLL patients who have had clinically diagnosed EBV-driven IM. There is little evidence at this stage to suggest that EBV does cause CLL, even though this virus has been implicated in other cancers such as Burkitt’s lymphoma, some head and neck cancers and perhaps even some varieties of NHL. But the latest research does suggest that IM + CLL folks may be more immune compromised than just plain CLL patients.

There is concern that the increasing incidence of aggressive secondary cancers and Richter’s Transformation into short-fuse lymphoma is caused by the increased use of T-cell depleting therapies incorporating drugs such as fludarabine, Campath and high dose steroids. EBV reactivation has been linked to some of these cases. Hence our warning: IM + CLL folks may be more at risk by being extra vulnerable going in and for them, some of these drugs that further deplete T-cell reserves may carry additional risk factors.

Does this mean you should never ever have fludarabine or Campath if you are one of the IM + CLL folks? No! Many times we face “devil-and-the-deep-blue-sea” choices and we simply have to make the best of it. It just means you should be aware of the risks and rewards, not go in blind. If you can walk the minefield of therapy choices without triggering additional T-cell dysfunction, that may be a good thing to do. Heck, that is a good thing to do for all CLL patients. Avoid unnecessary hits to your immune system when possible.

Last but not least in my opinion, we identified interesting and credible research that suggests the statin Zocor may have beneficial effect of controlling EBV-driven secondary cancers. Zocor is off patent and cheap. It has been used by millions of people for more than 2 decades for cholesterol control. There is no free lunch, but the adverse effects of Zocor are pretty well understood. Is it worth taking if you are one of the people with IM + CLL risk profile and especially if you have no choice but indulge in additional T-cell depletion? Good question, and one that can be answered only by you and your doctors, not layperson patient advocates such as me. My constant advice: it is always important to know the balance between risks and rewards.

These are important questions, and down the road we hope we will find researchers who are willing to develop rigorous and scientifically valid surveys to answer the questions. (1) Is the incidence of IM higher in CLL patients than the general population? (2) Does prior history of IM impact survival statistics of CLL patients? (3) Should IM + CLL patients be more concerned about T-cell depleting therapies? (4) Does daily Zocor help to mitigate some of these risks?

The problem as I see it - there is no money to be made by doing this research, and no big drug company will fund the work. Most of the big cancer centers may be unwilling to tackle it as well, since it may impact patient recruitment into their own in-house clinical trials using deeply immune suppressive therapies. I have heard back from several researchers and oncologists. The comments have ranged from honest scientific interest to mild curiosity to dismissive condescension to outright hostility. It will take time for all of this to become conventional wisdom. The present orthodoxy does not support it.

This is one more case where it is your life on the line. Accurate and timely information is essential for playing the hand you have been dealt to best advantage. We can help, but you have to do your bit of the heavy lifting. There is no substitute for individual learning, going past the sound bites. And no substitute for patient involvement in their own healthcare decisions.

Be well,

Chaya
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