Bunny poking her head outGreetings.  Yes, this is really me, Chaya Venkat, your ever so popular and favorite patient advocate.

After retiring from active participation in the CLL patient community, I have been living a very low key life.  Almost a reclusive old lady, I spend my time playing with my dog and my competitive spirit satisfied by playing kick-ass duplicate bridge.

So, why am I poking my head out at this point?  Believe me, I do it reluctantly and have dithered about it for days on end.  This topic is about as complicated as it gets.  Especially for you guys, CLL patients who have been around the block a few times and have been through b-cell depleting therapies (just about ALL therapies used to treat CLL are b-cell depleting procedures:  examples are Rituxan, FCR, etc.), it is a dangerous situation and you need to step carefully

I am writing this article because I think it is that important.

Fair warning, it is a long and detailed story.  I hope each of you will take the time to read it, as many times as it takes to get the story line and logic straight in your heads.  And I will be asking for your help in the Editorial section.  Don’t worry, I am not “selling” anything, I won’t ask you to buy anything or send me your hard earned money.  This is still me, Chaya.

Oh, I am still as long winded as I ever was. Much of the front end of the article is stuff you may have read already.  The punch line (trust me, there is a punch line, I would not have written this article otherwise) is almost at the end.  I ask you to please read this article from the beginning to the end, no skipping paragraphs.

Proven methods for avoiding COVID-infection

You have heard the first and best approach to avoiding COVID-19 infection a zillion times by now: masks, social distancing, hand washing, staying home as much as possible, not congregating in large groups  – especially indoors and over extended periods of time, to share a meal, celebrate, greet family members.  This approach works, not just for COVID-19 but for all respiratory diseases.  As long as you don’t expose yourself, you will not be infected.

But.  Yes, there is a but.  Social distancing is getting to be a real burden. We are after all, social creatures.  Life becomes worth living when we can spend time with people we love, doing things that we care about.  The need for social distancing is not going to end tomorrow.  If anything, this is the most dangerous wave of the virus we have seen thus far, likely to continue well into summer next year.  If you are an immune compromised patient (CLL patients are perfect examples of this group), get ready to hunker down for a good while longer.

Vaccines are here!

VaccineThe good news first:  several vaccines have been approved in the USA and Europe.  This has indeed been “warp speed” development. No one expected to get these vaccines available so quickly and certainly did not expect them to be such highly effective vaccines.

Now for the not so good news:  chances are slim to none that CLL patients will respond to vaccines.  How do we know this?  Well, we know from experience that CLL patients do not mount much of a therapeutic response to other vaccines, like the flu vaccine or mumps vaccine, for example.  The reason is simple.  Vaccines need healthy population of b-cells to work with.  Darn, these are exactly the cells we do not have, either because they have all become cancerous, good for nothing CLL cells, or in an effort to reduce CLL cells we have been through therapies that destroyed all b-cells, cancerous or otherwise. Bottom line, you would be foolish to think this is a slam dunk and your own vaccination will protect you against COVID-19 infection.

Does that mean you should refuse the vaccination altogether, if you are offered the opportunity?  I guess not.  My hero and heart-throb Dr. Anthony Fauci puts it this way:  immune compromised people are less likely to mount a robust response and get high degree of protection from the vaccine.  It may be muted response at best.  “But every little bit helps and something is better than nothing”. I cannot fault that mathematical logic.

CDC guidance has been confusing at best on this once in a lifetime healthcare crisis.  The latest missive from them says if you have particularly severe allergies or autoimmune diseases, you should probably avoid the vaccine.  (Question:  does autoimmune anemia or autoimmune thrombocytopenia, where red blood cells and platelets, respectively, are destroyed by CLL patients’ own messed up immune systems  count as contra-indication to the COVID-19 vaccine?)  This question has not been answered, as far as I am aware.  No one has gone into the weeds that deep to give us guidance.

CDC issues COVID-19 vaccine guidance for Americans with HIV, Guillain-Barré and other underlying conditions


Published: Dec. 30, 2020 at 8:38 a.m. ET

By Meera Jagannathan

Adults of any age with certain underlying medical conditions are at increased risk for severe illness from the virus that causes COVID-19

Yeah, but we can wait for “herd immunity”, right?

Herd immunity, as the name suggests, is when everyone around you, “the herd” around you, has been vaccinated and there are very few people left to spread the disease around. The bad news is that we are messing up the distribution and roll out of the vaccine shots.  If technical development of the vaccines was done at warp speed, getting the vaccines administered to US citizens is happening at a snail’s pace.  Bad public health policy, poor leadership, rampant distrust of science in the general population – I can go on and on.  Someone calculated that at the pace we are doing vaccinations right now, it will take almost a decade to get herd immunity.  You guys are up for that?  Strict social distancing for the next ten years?  Even with a new administration in place that works out the logistic kinks, it will be well into the New Year (summer, maybe early fall) before we can hope to see large percentages of people vaccinated.

What’s Truly Terrifying About the Slow Covid-19 Vaccine Rollout


A cursory glance at country-by-country covid-19 vaccinations shows the U.S. well ahead of other countries. But dive a little below the surface and the data tell a different story. While more than 2.1 million people have received their first covid-19 vaccine shot, more than 9.3 million doses lay waiting to be shot into American’s arms, according to numbers from the Centers for Disease Control. At the current rate, the U.S. will take a decade to hit the critical vaccination threshold for us to safely move past this mess.

Given the average age group of CLL patients, most of us have grand-kids we love.  While kids are themselves not at grave risk of COVID-19 complications, they do get infected and lord knows they spread it around.  I used to call them cutest little germ factories.  Right now, COVID-19 vaccines are not approved for kids, rightly so.  What that means is that your social distancing is most specifically directed against you hugging your grand-kids, until the vaccine has been approved for them too and they have been appropriately vaccinated.  And that adds even more months to your personal quarantine and lock-down period.

How bad can COVID-19 infection be? Is this a lot of fear mongering?

Then there is the most dangerous medical nonsense that has been spread around, that COVID-19 is just like the annual flu, nothing to worry about.  That is just not true.  The mortality is much greater with COVID-19.  Many more  people will get hospitalized with serious complications and many more people will die because of COVID-19 than caused by modern annual flu.  And how do CLL patients in particular fare if they catch COVID-19?  It is a scary scenario:

Outcomes of COVID-19 in patients with CLL: a multicenter international experience



Given advanced age, comorbidities, and immune dysfunction, chronic lymphocytic leukemia (CLL) patients may be at particularly high risk of infection and poor outcomes related to coronavirus disease 2019 (COVID-19). Robust analysis of outcomes for CLL patients, particularly examining effects of baseline characteristics and CLL-directed therapy, is critical to optimally manage CLL patients through this evolving pandemic. CLL patients diagnosed with symptomatic COVID-19 across 43 international centers (n = 198) were included. Hospital admission occurred in 90%. Median age at COVID-19 diagnosis was 70.5 years. Median Cumulative Illness Rating Scale score was 8 (range, 4-32). Thirty-nine percent were treatment naive (“watch and wait”), while 61% had received ≥1 CLL-directed therapy (median, 2; range, 1-8). Ninety patients (45%) were receiving active CLL therapy at COVID-19 diagnosis, most commonly Bruton tyrosine kinase inhibitors (BTKi’s; n = 68/90 [76%]). At a median follow-up of 16 days, the overall case fatality rate was 33%, though 25% remain admitted. Watch-and-wait and treated cohorts had similar rates of admission (89% vs 90%), intensive care unit admission (35% vs 36%), intubation (33% vs 25%), and mortality (37% vs 32%). CLL-directed treatment with BTKi’s at COVID-19 diagnosis did not impact survival (case fatality rate, 34% vs 35%), though the BTKi was held during the COVID-19 course for most patients. These data suggest that the subgroup of CLL patients admitted with COVID-19, regardless of disease phase or treatment status, are at high risk of death. Future epidemiologic studies are needed to assess severe acute respiratory syndrome coronavirus 2 infection risk, these data should be validated independently, and randomized studies of BTKi’s in COVID-19 are needed to provide definitive evidence of benefit.

Blood (2020) 136 (10): 1134–1143.

For those of you who wish to read more about it, here is a link to another very credible article:


Is there a silver lining to this review?

Silver LiningIs there anything you can do to give yourselves a little extra protection?  Just in case you do get exposed, in spite of your best efforts at social distancing etc.?  Aha.  Now we get to the crux of my article.  My boss once told me to never bring a problem to his attention without having a solution (or at least a partial solution) to the problem in my back pocket.  I do have what I think is a partial solution.  I will be the first to admit it is at best a partial solution.  And it will take your effort to understand it, explore your options and put it into practice.  As someone said, you don’t get what you deserve in life, you get what you negotiate. Step one, read and understand.

The POTUS Protocol

As the name suggests, this is the protocol used to treat President Trump.  Almost immediately after he felt the first symptoms of COVID-19, he was taken by helicopter to Walter Reed Hospital where a team of top notch doctors took care of him.  Based on public reports, I understand he got Remdesivir, convalescent plasma and monoclonal antibody cocktails directed against COVID-19.  He may very well have been given other drugs such as prednisone.  Heck, for all I know he got a tall glass of carrot juice as well.  His color was a little off?

For our discussion purposes, let us put aside the possible administration of prednisone and carrot juice.  The POTUS Protocol rests on three pillars:

  • Remdesivir is an anti-viral drug
  • Convalescent plasma – as the name implies, it is plasma donated from recovered COVID-19 patients
  • Monoclonal antibody cocktail from Regeneron

Each of these drugs has its own strengths and weaknesses.  There will be a second article where I will discuss these and other drugs proposed for the treatment of COVID-19 in detail, for now I don’t want to get sidetracked.

The POTUS Protocol worked for the POTUS, it got the president back into the thick of election year politics.  While President Trump is no spring chicken and has less than healthy lifestyle habits, he has one huge advantage over you guys.  He does not have CLL.  He is not immune compromised.  His immune system works about as well as any other 75 year old obese man, unlike you guys who are “special”.  How are CLL patients likely to respond to the full strength POTUS Protocol, or even parts of the therapy combination?  Here are two scenarios I would like to bring to your attention.

Scenario one:

Let us consider the case of a hypothetical CLL patient (“Steve”) in his early seventies. Recently he has been under treatment for his CLL with Rituxan.  He responded as well as most patients do to Rituxan.  In other words, the drug helped reduce the number of CLL cells in his body, but not entirely eradicating them.  As most of you know by now, it is impossible to get the coveted “pcr negative” response to Rituxan.  In layman terms Rituxan can reduce the total number of CLL cells in the body, but not completely eliminate them. As the Rituxan concentration in patient’s body goes down gradually over time, the CLL cells will make a comeback and grow their numbers.  CLL and COVID-19 virus have all the time in the world, they can wait it out.

In spite of his best efforts, Steve got infected with COVID-19.  Initially, his doctor was reluctant to hospitalize him.  His symptoms were minor and tolerable.  The hospitals were over-crowded and staff over-worked.  So Steve was told to manage his symptoms as best as he could, at home.

As the COVID-19 virus grew in his body, zillions of copies of the virus created over time, his symptoms got worse and his doctor decided it was time to do something about it.  By this time he was shedding copious amounts of virus and too infectious for his oncologist to treat him as an outpatient in his office. He was hospitalized and given the POTUS Protocol.  Sure enough, the three drugs reduced the number of viral particles in his body and thereby reduced the symptoms as well.  After a few days Steve was discharged and told to manage the residual symptoms again from the comfort of his home.  Pretty much what you have probably experience after your first CLL therapy with Rituxan or some other combo.  Cancer cell load goes down, and with it the symptoms (swollen lymph nodes, for example), and you are told to go home.  Enjoy your remission, such as it is, for however long it lasts, live to fight another day.

I want you to understand the difference between what happened to the POTUS when he got the POTUS Protocol, and what happened to our hero Steve.  President Trump recovered.  He did not just improve his symptoms, his body’s own immune system provided enough support and help the drugs, and as a consequence COVID-19 was eliminated from his body.  He tested negative for the virus in subsequent tests and for all practical purposes, he was cured.

Not so in the case of Steve.  The three drugs did the best they could. They reduced the “viral load” in his body by a significant amount, enough to improve his symptoms.  But no full cure, since the drugs did not get the assistance they needed from Steve’s deficient immune system.  By the time he was discharged from the hospital, COVID-19 was still present in his body, fighting a long drawn out brawl with the drugs.  Since these drugs last in the body for several months and continue working over that period of time, a stalemate of sorts held for several months.  Over the next several weeks and months he tested positive for COVID-19, even though his symptoms were better than before he got therapy.

Time went by.  Little by little, the drugs of the POTUS Protocol gradually wore off in Steve’s body.  And, once this happened, the virus gained the upper hand.  Steve’s viral load sky rocketed, his symptoms came back big time.  To make a sad story short, Steve was hospitalized again and passed away from COVID-19 complications.

End of the story, right?  No, not by a long mile.  Forgive me for being a little callus, but this is when the case history becomes really interesting / dangerous.  You see, they monitored Steve and the particular version of COVID-19 he had.  Over those several months of infection, his body struggled with a low level COVID-19 infection.  Not quite killed outright, the remaining virus particles had a comfy warm body, lots of cells to infect, plenty of time.  And pushed around by the POTUS Protocol drugs, the virus did what viruses do, mutate and change itself a little bit at a time, to try and avoid getting killed. Once the drugs wore off in his body, the new, mutated version(s) of COVID-19 came roaring back.  By the time Steve passed away he was shedding copious amounts of the new mutated version of COVID-19, with as many as 23 or more mutations compared with the previous version of the virus.  For comparison, corona viruses accumulate about one mutation per month or longer.  Steve’s body grew a massively mutated version of the virus in just a couple of months.

While “Steve” is a hypothetical CLL patient, I have not made up the case history.  You must have heard of the “new variant” of COVID-19 that was originally identified in the UK, and now detected in many more countries, including the USA.  As far as we know, the new variant is far more infectious, passing from person to person with greater ease.  Experts rate its infectiousness at anywhere between 50-70% higher than the previous version of COVIS-19.  It is quickly becoming the big bully on the block, replacing all previous versions of the virus.  Does the new variant kill higher number of infected patients, or target a different age group?  Does the new variant get around the vaccines we have, becoming resistant to them before we have a chance to get everyone vaccinated? We do not know the detailed answers yet, but experts have not seen any evidence of these catastrophic developments – thus far.

That takes care of that, right?  Not quite.  With hospitalizations at unheard of levels, ICU beds in critically short supply, exhausted medical staff doing the best they can, quality of healthcare has begun to suffer.  More people will die, not because the new variant is more deadly (we hope it is not), but because as more and more people get infected with it,  needing hospitalization and skilled medical care at a time when we are struggling to provide either of them.

LA buckles under COVID-19 surge as bodies pile up and hospitals resort to desperate measures

L.A. County hospitals hit breaking point: ‘No one would believe this is in the United States

Real life version of Scenario one:

Here is the link to the UK case where a real NHL patient gave birth to the new variant of COVID-19.  As I have discussed many times in my earlier articles, Non-Hodgkin’s Lymphoma patients are like kissing  cousins of CLL patients.  There are some differences, but both are b-cell cancers.  They share many of the immune function deficits common to both cancers.  Both use many of the same drugs.  The UK patient was under therapy with Rituxan, for crisssakes!  You can find dozens of articles on the origin of the UK variant.  I have given below a layperson review of very credible article in a prestigious journal.  I chose this article because it is easy to read and understand by non-professionals.  Please take the time to read it. I am not kidding when I say your life may depend on it.

U.K. variant puts spotlight on immunocompromised patients’ role in the COVID-19 pandemic


By Kai Kupferschmidt Dec. 23, 2020 , 2:30 PM

In June, Ravindra Gupta, a virologist at the University of Cambridge, heard about a cancer patient who had come into a local hospital the month before with COVID-19 and was still shedding virus. The patient was being treated for a lymphoma that had relapsed and had been given rituximab, a drug that depletes antibody-producing B cells. That made it hard for him to shake the infection with COVID-19.

The patient, who died in August, 101 days after his COVID-19 diagnosis, despite being given the antiviral drug remdesivir and two rounds of plasma from recovered patients, which contained antibodies against the virus. When Gupta studied genome sequences from the coronavirus that infected the patient, he discovered that virus had acquired several mutations that might have allowed it to elude the antibodies.

The new variant, along with research by Gupta and others, has also drawn attention to the potential role in COVID-19 of people with weakened immune systems. If they provide the virus with an opportunity to evolve lineages that spread faster, are more pathogenic, or elude vaccines, these chronic infections are not just dangerous for the patients, but might have the potential to alter the course of the pandemic.

This last bit I highlighted raised alarm bells in the medical community.  Try to imagine what will happen when a CLL patient (or NHL patient, or any other similarly immune compromised patient) gets infected with COVID-19, tries to take care of it at home until the viral load gets very high and as a result symptoms become too much to tolerate.  If the patient is then hospitalized and treated with some version of the POTUS Protocol and discharged when his symptoms become manageable, just like my hypothetical patient “Steve” or the UK case described above, these lingering cases of COVID-19 become Petri dishes, human laboratories for incubating new variants of the disease.  Perhaps the next variant such a patient incubates will not be just more infectious, perhaps it will also kill more kids.

This is the nightmare scenario that prompted me to write this article.  Not only is the COVID-19 very dangerous to our people, but if they are partially treated and allowed to have months of low level disease, the danger is now multiplied.  True, the immune compromised patients are obviously at great risk once the protocol drugs stop working.  But even more alarming is that such patients are a huge risk to the greater community around them.  How would you like to be the unwitting incubator that created a new and even more deadly version of COVID-19?  As one of the experts described it, such patients are akin to multi-drug resistant TB patients – hugely feared by epidemiologists as a very dangerous class of patients, to be handled with full hazmat gear under total quarantine.

Scenario two:

Thanks for sticking with me thus far, reading this horror story.  Here comes the silver lining part, I hope it makes it worthwhile.

Once again, let us imagine another not-so-hypothetical CLL patient.  “Diane” has had CLL for almost 20 years, been through several therapies, latest being maintenance therapyinfusion with Ibrutinib.  She is obviously immune compromised and needs to be very careful not to get infected.  Over the years, Diane has learned to avoid infections, all infections, not just COVID-19, like the deadly plague they are to her.  Also over that time, she learned about IVIG therapy (intravenous immunoglobulin therapy) from her friendly neighborhood patient advocate.    Diane is fortunate in having  good insurance and an oncologist willing to work with her.  She negotiated for getting regular IVIG infusions, every three months.  IVIG therapy depends on plasma donated by healthy donors.  The donated plasma is rich in antibodies against common pathogens going around the community.  IVIG therapy has been around for decades, and over that time, we have become very good at purifying it, extracting the precious antibodies form the donated plasma.  Getting regular infusions of immunoglobulins meant Diane had extra protection against common infections – common indeed but that can pose serious risk to her in her immune compromised state.  Her two decades with CLL would have been a lot more dangerous without this extra bit of protection offered by IVIG.

Let me be very clear about this point.  Diane’s best and strongest option is to practice social distancing and self quarantine as much as she can, in avoiding COVID-19 or any other infection for that matter.  But there is ample literature that supports use of IVIG therapy in providing extra level of protection from infection in immune compromised patients.

Hmmm.  If IVIG helps immune compromised patients from catching common garden variety infections, can convalescent plasma help high risk patients such as Diane from catching the COVID-19 in the first place? That little bit of extra protection, coupled with strong quarantine and social distancing measures might just keep Diane safe.  If she is able to get the infusions repeated every few months, she might even be able to ride out the virus raging out there, until we actually get herd immunity and all of us heave a big sigh of relief.

Unfortunately, convalescent plasma is in short supply.  Bummer.

But we have two more options.  The first option is monoclonal antibody cocktails, made by Regeneron.  Just like Rituxan – the synthetic anti-CD-20 monoclonal antibody made by Genentech, Regeneron has come up with a cocktail of anti-COVID-19 antibodies.  To underline the point I am trying to make, unlike “Steve” who was treated with these drugs after he had been infected for some time and had very high viral loads, setting up the nightmare scenario of a virus that was not quite killed and allowed to linger and mutate for months, I am suggesting using the monoclonal antibody cocktail as prophylaxis – as a way of preventing infection in the first place – in high risk patients like Diane.  Treat immune compromised CLL patients with the Regeneron monoclonal antibody ocktail therapy before they get infected with COVID-19. 

OK, I agree not everyone can negotiate getting the Regeneron antibody cocktail ahead of time.  These are overwhelmingly dangerous times and everyone is asking for help. What would have happened if “Steve” from our first scenario had been given the monoclonal antibody cocktail very early in his COVID-19 nightmare?  Heck, what if he got the monoclonal antibody cocktail as soon as he developed the first symptoms of COVID-19, just like President Trump was?  If Steve got lucky, it might have helped bring about a full cure.  In cases where the patient has just been infected and still has very low viral loads, it may have been enough.  With vastly smaller hordes of virus to handle, even one of the components of the POTUS protocol may have been enough to clear the virus completely, fully cure Steve  – we can hope.

You don’t have to take my word for it.  This time around I chose a professional grade article to make my case. JAMA (Journal of American Medical Association) is about as credible as it gets.  Monoclonal antibody cocktails prevent COVID-19 infections, if given as preventatives in uninfected patients, or very soon after infection.

Monoclonal Antibodies for Prevention and Treatment of COVID-19


June 15, 2020
Mary Marovich, MD; John R. Mascola, MD; Myron S. Cohen, MD

The coronavirus disease 2019 (COVID-19) pandemic has created a worldwide crisis and inspired an urgent search for prevention and treatment of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection. Attention has focused on the development of vaccines, new antiviral agents, and convalescent plasma infusions. Monoclonal antibodies have received less attention even though neutralizing antibodies are a key component of protective immunity for most viral diseases. Neutralizing monoclonal antibodies to COVID-19 have the potential for both therapeutic and prophylactic applications, and can help to guide vaccine design and development.

JAMA. 2020;324(2):131-132. doi:10.1001/jama.2020.10245

Even if you cannot wade through the medicalese yourself, this and many more articles like this may be good to have in your arsenal, when you try to negotiate with your doctor to get Regeneron monoclonal antibody cocktail as regularly scheduled  infusions – similar to the IVIG therapy some of you have been getting to prevent garden variety infections.  Many of you have been getting regularly scheduled IVIG therapy, to prevent infections before they have a chance to gain a foot hold in your body.  What I am suggesting is no different.  We are targeting a particular virus, with a targeted monoclonal cocktail.  Same logic as in IVIG therapy.

How easy is it to get Regeneron’s monoclonal antibody cocktail therapy?

MABBelieve it or not, physicians are complaining that not enough patients are being prescribed this potentially lifesaving drug.  Reason for it is very simple.  Like “Steve”, most patients get to the hospital after they have struggled with COVID-19 infection for a while on their own.  By the time their doctor suggests they need to get hospitalized, their virus load is too high for them to be treated by their local oncologists in their satellite offices or outpatient clinics.  Once they are that sick, these patients have no choice but full blown hospitalization.  And, as we all know by now, hospitals and medical staff are overwhelmed these days.  In many cases “triage decisions” are being made, care being rationed to patients who have the best chance of survival.  Trust me, you don’t want to go there.

And then there is the huge worry now about treating immune compromised patients like “Steve” and the U.K patient with therapies that only partially control the disease, letting the corona virus stew around in their bodies.  Perfect scenario for more mutations to take place.  As you can see from the article below (and many more like it that you can find by searching), we have not figured out the optimum way of using this precious drug.

Only one covid-19 treatment is designed to keep people out of the hospital. Many overburdened hospitals are not offering it.


Dec. 31, 2020 at 10:00 a.m. EST

As of Wednesday, the federal government had allocated 550,000 doses to states and territorial health departments, which had distributed 378,000 doses to health-care facilities, according to the Department of Health and Human Services. But only 20 percent of the supply had been used, HHS said.

Putting it all into simple actionable items:


Let me start with the important disclaimers.  I am not a medical doctor.  All I can do is put credible medical information in front of you, hopefully in a manner that you can read and understand.  I cannot make medical decisions for you.  Only you and your doctors can do that.

What I am trying to do however is present  a potential way of avoiding COVID-19 infection in immune compromised CLL patients. All of my information is based on credible professional articles.  I have presented links to some of them.  You can find many more by searching the internet. Here is a bullet point summary of what I am proposing.

  • Quarantine, socially distance, wear a mask, wash your hands and do all the things you know you are supposed to do. No ifs or buts, these are the first and most simple things you can do to keep yourself safe.
  • If you are offered COVID-19 vaccination, you probably should accept it. The risk is low, and as Dr. Fauci puts it, even a little bit of vaccine response is better than no vaccine response.  Get the vaccination, but don’t put too much hope into thinking it will protect you from infection.
  • If you have good insurance and good relationship with your oncologist, please see if you can schedule regular infusions of the Regenron monoclonal antibody cocktail. It might help you not get infected in the first place.  A few months of protection from each infusion, repeated every 3 months or so, and you may get to the other side of this scary time in one piece.  It may well help you sail through to a time when herd immunity becomes a reality.
  • If in spite of your best efforts you get infected, it might be a good idea to react promptly. Getting some version of the POTUS Protocol very early in the COVID-19 infection may make all the difference.  Wait too long, you may end up like that NHL patient in the U.K., the unfortunate man that will go down in history as the first patient to help incubate and spread a more dangerous variant of the virus.
  • Doing your homework ahead of time is what is going to make the difference. Can you imagine explaining all this to the ambulance crew or the harried ER doctor if / when you finally call 911?  Get your ducks in a row, well before that point. Know what you want done, negotiate it ahead of time, make sure your doctor and family members are aware of all of it. Make it so.


I need your help.

Do you have contacts among any of the CLL experts at the elite expert centers such as M.D. Anderson, Mayo Clinic, Ohio State University Hospital, UCSD Hospital etc.?  Please bring this article to their attention.  I am not looking to short circuit the experts, on the contrary I welcome their comments and their guidance.

Over the several years of my retirement, we have lost touch with many of our loyal members. Some have passed away, others have changed their email addresses and we can no longer reach them.  I would like a vigorous debate of this article and what it is proposing in the patient community.  Please post links to it in the various patient chat rooms, discussion boards etc.  I would like to think we can reach many more CLL patients through your help.  We are all our brothers’ keepers.  I have done my job. Now it is your turn to do yours.  It was never about just me and my efforts, CLL Topics has always been a community effort.  Together, we made a difference back then.  Let us do it again.  This time the stakes are even higher.

CLL patients are not the only immune compromised people out there.  While I have written this article from the perspective of a CLL patient advocate, one of the pivotal parts of my proposal rests on the experience of the NHL patient in the U.K.  If you are an expert at navigating the social media, this may be a good chance to get the word out to as many similarly immune compromised people as we can.

I realize times have changed and we might get a different class of readers than the ones you and I have gotten used to in our CLL Topics, a patient community website. If some of the comments are offensive, please remember not to feed the trolls.

I fully understand only a small percentage of immune compromised patients have access to the kind of therapy options I am proposing here.  If you are one of the many people with poor quality healthcare, no insurance to speak of, barely making ends meet and struggling to feed your family – this whole article is a waste of time for you.  Please accept my heart-felt apologies.  I tell myself it is worth saving even a few lives, even just a few.  That does not really help the heartache I feel.

If you want to reach out to me personally, you can send me an email using our Contact Us page. If you have my old email address on file, please note it has changed — the .org ending has changed to .net.  (My daughter Radha is still our webmaster.  If you have website issues, please reach out to her through the Contact Us page, and her email also ends in .net).

I have no doubt I will get a lot of emails.  I will try and answer as many of them as I can.  Please forgive me if I do not get to yours quickly, or it falls between the cracks.  If you post your question on the comments section, it makes my life easier.  I can post my response once and everyone can read it.

In a week or so, I will publish my second article describing each drug component of the POTUS Protocol, as well as all the other drugs that have been proposed to combat COVID-19.

From my heart to yours: Happy New Year, stay safe, stay smart.  I will see you guys at the other end of this tunnel.  It will take some time, but it will get better.  We just need to hang in there until then.

Be well,