Greetings. 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!
The 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
https://earther.gizmodo.com/whats-truly-terrifying-about-the-stumbling-covid-19-vac-1845967591
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
https://ashpublications.org/blood/article/136/10/1134/461426/Outcomes-of-COVID-19-in-patients-with-CLL-a
Abstract
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.
https://doi.org/10.1182/blood.2020006965
For those of you who wish to read more about it, here is a link to another very credible article:
https://ashpublications.org/blood/article/136/10/1115/463533/When-CLL-meets-COVID-19
Is there a silver lining to this review?
Is 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
https://www.latimes.com/california/story/2020-12-31/l-a-county-hospital-hit-breaking-point-no-one-would-believe-this-is-in-the-united-states
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 therapy
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
https://jamanetwork.com/journals/jama/fullarticle/2767383
June 15, 2020
Mary Marovich, MD; John R. Mascola, MD; Myron S. Cohen, MDThe 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?
Believe 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.
https://www.washingtonpost.com/health/2020/12/31/covid-monoclonal-antibodies-unused/
Dec. 31, 2020 at 10:00 a.m. ESTAs 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.
Editorial:
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,
Chaya
RSS Feed
97 comments on "Avoiding COVID-19 Infection"
Oh Chaya! We who remember you and PC are grateful for this discussion. Always great information, in readable format.
Hi Sue. Thanks. You should get a prize for being the first reader to post a comment. I am really looking to get a vigorous discussion going. I hope many patients will speak up, add their voices to the choir.
Thanks you for sending this. Will take it to all of my Doctors to help me negotiate. I do take IVIG every 5 weeks and this article will help if I contract the virus….Thanks again for your ideas. As I am 89, guess I’m a prime target as I’ve also had lung cancer.
Yes, I read it all and can see the prize information you have given us. Have contacts at MD Anderson and UT Southwestern in Dallas. Will see what I can do.
Fran Deen
FranDeen@tx.rr.com
As a 16 year CLL patient on IVIG therapy, I’d like to add that the donated IgG
from which the infusions are made come from 1.5-2 year old donations and, hence, contain no COVID antibodies. Maybe in the future that might change but not for now.
Thanks Chaya. I had FCR 5 years ago and still in remission at 71. I hadn’t realised how dangerous Covid was for us CLL’s. Will definitely take better precautions from now on. Will send you article to my Onco. Cheers from Melbourne, Australia
Thanks for sharing. And good to hear from you.
Funnily enough having heard about a monoclonal antibody study that will hopefully provide protection fir a year i posted about it just the other day. You may be interested to have a look.
Thanks Fran. You are the kind proactive and involved patient that will get this ball rolling. Thank you.
So happy to hear from you again. You are the only voice that seems to synthesise all the diverse information out there and bring a considered overview that has the right level of detail for laypeople to consider their options – there’s little to bridge the gap between academic articles for hematologists and over-generalised public websites that state the obvious.
I had no idea until I read this that vaccination would be less-than-effective for me but that’s very valuable to know. And my default position is always to manage as long as I can without intervention – not the best strategy if I was infected with COVID it seems. At the moment we are very fortunate in Queensland, Australia that the pandemic is contained but I’m very aware that it takes little for it to resurge and we cannot be complacent with precautions.
I don’t even know if Regeneron is available to me here if I need it but it’s something to discuss with my oncologist when I have my regular check-up this week.
Thank you again for your insight and care.
Hello Chaya,
I am not known to you. Diagnosed in early 2014, it was late spring of 2014 when i found your site and that of your husband’s. I was thrilled to find information and from there you two launched me to other sites and people who taught me so much. I have CLL. I have Amyloidosis. I have Multiple Myeloma and even another, not named group of clonal cells. Had a stem cell transplant for myeloma last year and on a maintenance therapy.
I practice saftey measures, get stricter guidance from my wife, and yet i still take a calculated risk occasionally. I am a social type, yet i do not feel trapped at home.
Your remarks above will forever resonate with me as you helped shape the new me. Thank you and I will share your message.
Happy New Year!
Tom, I am not suggesting regular IVIG will help with Covid-19. I am suggesting the new Regeneron monoclonal antibody cocktail which is specifically designed and targeted against the “spike protein” of the COVID-19 virus. Garden variety IVIG therapy is given as an analogy. Hope that clarifies the issue.
Wow. What a blast from the past to see something from the CLL forum pop up in my email feed! I remember sending you the poem, “Do Not Go Gentle into That Good Night” when PC passed away. It wasn’t long after that my beloved Jackie also passed away. That was 10 years ago.
I cannot expand much on what you have written other than this…
I was a member of the clinical trial for the Moderna vaccine. So was my new wife. I received the final vaccine over four months ago. It was confirmed by an independent antibody test. My wife received the placebo. Last week we were notified she will move to the front of the line to get the real thing as a way of thanking her for her participation.
Here is what i know about the vaccine. It is safe. It works. As reported, the first shot will give you a very sore arm. The second shot will cause flu-like symptoms for less than 24 hours. Do not expect to feel well on the day following the second shot. As suddenly as the flu-like symptoms appear, they will disappear. You may actually feel better than normal on the third day following the second shot; just as reported by Trump after his treatment with Regeneron. It may also be due to the lessening of the psychological strain of knowing you no longer have to worry about Covid.
As an interesting side note, and you will hear it here first, I was (seemingly) cured of a skin allergy that I had that was caused by a dermal adhesion glue used for a Type 2 continuous glucose monitor. I was no longer highly allergic immediately following my first shot. I reported the interesting fact to Moderna. I could only wonder what the vaccine might do with regard to GvHD? GvHD is what finally led to Jackie’s death.
In any case, my recommendation is to receive the vaccine ASAP.
I am glad to hear you are still doing well.
Sincerely,
Bruce Taylor
Dearest Chaya, Your support was a lifesaver soon after I began this journey in 2004, and here you are again with facts and science we need. I’ve been fortunate to see 2 specialists in 2020. One, Dr. Kipps at UCSD, suggested that at some point my bimonthly IVIG would include naturally-occurring Covid-19 antibodies,I suppose a version of herd immunity moving into IVIG. The other, Dr. Sharman in Oregon, has already mentioned the possible efficacy of monoclonal antibodies on infection. Thank you so much for sharing the data I’ll need to be proactive. Stay safe!
Thank you SO much, Chaya, for pulling together the information in this article and putting it out there! I am so appreciative of your dogged pursuit of relevant information when the situation in the U.S. has been a total nightmare and each of us is trying to chart a path of informed action/risk assessment without a coherent public health policy re: COVID nationally (and without the kind of synthesis you have just provided!) Thanks you, thank you, thank you once again for your caring and looking out for the CLL community!
Welcome back Chaya. I have missed your thoughtful informative articles. Thank you for sharing your insights with us again. I will definitely be addressing your suggestions with my oncologist next month during our visit. Again, thank you for blessing us with your time and energy, for shining a light on this complicated issue in a dark time.
Paul Lilly
Dear Chaya, As a CLL newbie, I know I was not alone in grieiving your retirement in 2013. It is terrific to read your distinctive warm and honest perspective again. I am in awe of your synthesizing skills. I remain watch and wait, but your article helps me better shape my questions to my healthcare providers, thank you.
Per your request, i have sent your article to my team at UCSD, my local oncologist and PCP at Scripps Mercy, and friends with assorted immunosuppressive diseases around the country. I assume you have sent it to Dr. Kaufman at the CLL Society.
I can’t tell you how good it feels to know you’re in our corner again, thinking through the questions you know we’d have.
True
Dear Chaya
Thank you very much for coming out of your retirement to write this.
I think of you often and have fond memories of those old days.
Keep safe and well I have also stepped down from acting CLL life but like to keep up to date
Best wishes
Chonette
Dear Chaya,
Great to read one of your lucid posts after so long.
I fully agree that using monoclonal antibodies for passive immune prevention makes sense for immune compromised CLL patients who are less able to produce antibodies on their own. I also agree that because the timing of the infusion is critical and can be difficult to co-ordinate, it is best to have a plan in place before you need it. I do.
The data on our responses to other vaccines is discouraging (ie: 28% response to hepatitis B vaccine). And only 14 of 21 CLL patients developed antibodies in response to COVID-19 (Anti-SARS-CoV-2 antibody response in patients with chronic lymphocytic leukemia https://www.nature.com/articles/s41375-020-01030-2). However, there are almost no data on the efficacy or even the immunogenicity of the vaccines in CLL. CLL Society is working with others to remedy this. We assume our response will be less predictable, but we don’t know. The few anecdotes I have heard are encouraging with strong antibody formation post vaccine, but as Dr. Chesson said the plural of anecdotes is not data.
The long acting antibody preexposure trial (not yet recruiting in the US but open in the UK) seems encouraging and most sensible but the trial design is flawed that I and others are trying to remedy.
Working with our science team, CLL Society is pushing for all CLL patients, after consultation with their doctors, to get vaccinated regardless of disease or treatment status and discuss anti-SARS-CoV-2 antibodies early in the diagnosis. As you quoted from Fauci, some immunity is better than none. And maybe consider the long acting monoclonal antibody trial as an alternative or addition.
Thanks.
Stay strong, we are all in this together
Brian
Brian Koffman MDCM (retired) MS Ed
Co-Founder, Executive VP and Chief Medical Officer
Website: http://www.cllsociety.org
Wow, so nice to hear from Chaya. Most pragmatic advice a person can get for CLL patients. I learned a ton from you years ago, 2008, and your info helped me wait long enough to get Imbruvica treatment and not get treated via IV chemo. Still on Imbruvica since week after it was approved in 2014. My Onco dR had not known about the new targeted BTK oral treatment.
I have also sent a number of CLL patients you old site so they could learn about CLL & understand it due to your very pragmatic articles. Thank you Chaya and hope all is well with you. Regards, Dan here.
Chaya
If you get time could you comment on vitamin D supplementation as a preventative measure. I am a 54 yr old stable CLL patient and currently taking 5000 iu a day. It does seem deficient vitamin D is a factor for outcome.
Thanks for jumping back in to help. We are thankful for you.
Doug
To answer several personal emails succinctly, yes, I am recommending you discuss with your doctor and try to schedule Regeneron’s monoclonal antibody cocktail infusions on a regular basis. An ounce of preventive is better than coping with the disease after getting infected.
As for the other two drugs in the POTUS Protocol, convalescent plasma is in short supply and hard to get hold of. The anti viral drug Remdesivir has a complicated risk profile – I will be discussing that in my next article, wait for it.
If you do catch Covid-19 before you can get Regeneron’s preventative in place, I urge you not to try and deal with COVID-19 on your own. Get therapy as soon as you experience symptoms. The idea is to nip it in the bud, not wait until it becomes a monster and the drugs are unable to eliminate the virus. Remember the UK patient who incubated the new and more dangerous variant. You don’t want that.
As always, talk to your doctors, get their advice.
chaya
so good to hear from you, espeically about this timely and inportand topic. I was originally diagnosesd with stage 4 cll nearly 15 years ago. Back then, you were the “guideling light” that helped us (my wife and me) get through the challenges. nearly 15 years later i am still in cr, but my immune system is still surpressed and i have been prome to upper and lower respiratory infections. For the past 15 years i have been receiving ivig infusions rouotinely, so your recent articleis very timely, important and “right on target” for me. Thank you. I hope that you and your family are doing well during these challenging times and i hope that you do send follow-up e-mails/updates, as we trust you and your perspectives. Wishing you a very happy and healthy 2021. My sincere appreciation! Alan.
Thank you Chaya for all that this took to compose. Your email was a surprise but certainly welcomed.
I was diagnosed with CLL in 2008 and told I was stage zero, that I would probably die with it and not from it. I haven’t seen an oncologist for 8 years, but just keep tabs on my slightly above norm lymphocytes as seen in my annual CBC. Since I’m feeling fine, I saw no need to continue with an oncologist, BUT now I suppose with Covid lurking about, I should check in with one to see if my immune system is compromised.
Thank you again. I shall check in to this site for updates.
Doug, vitamin D3 supplements are a good idea. Heck, even Dr. Fauci recommended it.
We have several articles on importance of this “Sunshine vitamin”, even before Covid-19 came along. The reason is simple. CLL patients are prone to get secondary skin cancer, and it is important that you guys limit your uv exposure, stay out of the sun. Since lack of sun exposure drastically reduces Vitamin D3 levels, you need to take a daily supplement of it. Your level sounds about right.
Dear Chaya, thank you so much for this information in these dark COVID-times. Very recent I’ve had my 6-month’s check-up and CLL is still in complete remission. Bloodvalues were complete normal. Last treatment (RFC) was in 2016.
Regarding immunity, I want to mention that in 1978 I was vaccinated with the BCG-vaccine, a protocol when starting as a hospital employé. So was my wife. All those 42 years we were never bothered by any flew.
And now recently a scaled-up study is imposed in The Netherlands to find out how much a BCG-vaccine effects on the impact of a COVID-19 infection. It is well known that the BCG-vaccine boosts lifetime your immune system.
I’m nearly 67 years old and CLL was diagnosed at the age of 57. To keep my immunity on level, I daily take vitamine D + C and zinc as a supplement. Of course there is daily frood.
Your article woke me up and now I have to make up my mind what I additionally have to do besides social distancing, etc.
Wishing all the good for everybody.
Hans
Wow! Chaya, great discussion. I will forward to the docs for debate. Happy New Year! Andrew
Dear Chaya – We are in your debt! My loved one passed away of CLL in Nov 2013, age 57. Your website was invaluable to us. Welcome back from retirement!
Welcome back, Chaya!
You’re back!!!! And with reasonable and sensible advice. How I’ve missed you!. I am currently on IVIG infusions and will be discussing the Regenron antibody with her at my next appointment. I, too, have wondered if prophylactic monoclonals would be helpful. In the meantime, I will get the vaccine if offered.
PS – Fauci IS a heartthrob. I’m so glad his voice is better.
Chaya
So great to hear from you again. Thank you for this very informative article..so much to consider and take in and honestly much more information than I’ve received from my MD’s. Greatly appreciate your taking time to provide this and hope 2021 is a great year for us all
thank you so much for this! my husband was saying to me you need to have a plan in place in the event that you get covid. now i know what it should be. treat early and with rengeron. thank you and be well.
one question i have though, is in light of the recent mutations that have emerged, how effective will regenron continue to be? i worry that eventually the monoclonal antibody will no longer work. they’ll need an updated version of it, right?
Welcome back Chaya. I will be sending my Dr. an email on Monday and open a dialogue with him. I remember why you retired, but am really glad you decided to come back. Please have a Happy New Year.
So happy you are back with a gold mine of information.
When you retired, I was so sad, as you helped my husband and I get through the initial diagnosis of CLL.
He is still stage zero from 2006 and has been taking green tea tablets, vitamin D and other vitamins. Your warning about dealing with Covid early will be passed on to his doctors both at the VA and local.
I want to thank you for the clear explanations of CLL and Covid infections. The death rate is shocking and will make us reevaluate our safety protocols.
Welcome back and I look forward to your next article. You truly are an angel to us all.
Welcome back Chaya,
Riveting article. Read like a thriller!
Great info that confirms what I have been thinking all along.
It would be great if you could address 2 aspects:
– ‘Scalability’ of producing MABs on a large scale
– Some of the investigational antibodies such as VIR-7831 and its ability to evade mutations?
Dear Chaya, Thanks for taking the time to write this. It is very useful and I plan to discuss it with my dr at Columbia Presbyterian.
So glad you are back! We met several times in Columbia, Md and I have truly missed your important contributions.
Please continue- your input and research are like shining lights in these uncertain times.
So good to hear from you, Chaya, making good understandable sense as usual. I see Dr. Byrd at OSU and will be sure to have a discussion with him and my local oncologist. I see them alternately, 3 months apart, and their facilities have infusion capabilities. Sounds like a possibility. Hoping they will help me convince my insurance company.
Looking forward to your next article.
Happy New Year, everyone!
Hello Chaya, it’s so good to hear from you again! I felt such a loss when you ‘retired’, as since my CLL dx 2010, (still W&W, treatment naïve) you with your unique ‘easy’ style of explanation really helped me (and lots of others) to understand CLL. We’ve missed you!
There have been many changes since then and I thank you for what you propose. It’s brilliant that you’ve returned, chosen to be involved and especially at this time when we really need all the help we can muster. I will do what I can, though I’m in the UK, thankfully with Prof Adrian Bloor at The Christie as my CLL specialist. I’ve been in London since the beginning of the pandemic and Adrian Bloor’s referred me to the renowned Prof John Gribben (Consultant Haematologist at Barts) as I’ll be staying here now. I will contact them.
I look forward to your next article.
Take care and I wish you a Happy and Healthy New Year.
Oops…. in my comment of January 2nd, 2021 at 7:16 pm:
‘….any flew’ should be ‘….any flu’ of course.
Sorry, english is not my native language.
Hans
Thank you so much for this beautifully written piece, it may be scary in parts, but it’s always better to be informed.
Have you any views on the use of Ivermectin (oral or topical versions) as a prophylactic or for treatment for COVID-19 ?
Thanks again
Mat
Welcome back Chaya.
I have followed CLL Topics since my diagnosis in 2005 and I send my heartfelt thanks for your informed information and editorials. You have always made it easy to understand the medical jargon in journals.
Your Covid posting is well timed as we in the UK are in a difficult situation. Lots of very useful advice.
Best regards
for 2021.
Garry
Chaya
Many thanks for putting this article together.
I do miss your old site with the regular updates.
Take care.
Hi Chaya,
Thanks so much for the post. As usual, it was easy to understand, well researched, and thought provoking! We spoke nearly a decade ago when I searched for a BMT donor. Since that time, I’ve continued to be treated by Dr. Byrd at OSU using a couple of drugs on trail (that have been fantastic, BTW). I’ll certainly bring this up with him and his staff in my next visit, but my guess is they are already inundated with questions which your post has raised. Thanks for continuing to think of us. This really was helpful. All the best to you and your family for a wonderful new year.
Chaya,
Wonderful to hear from you with your wise words as always. We met when you kindly came all the way to the UK to talk at one of our CLL Support conferences, organised by my wife, Tricia.
Thank you for ‘sticking your head out again’. Really valuable advice for so many.
Kindest regards to you and your family.
Brian Gardom
Thanks so much Chaya. Your article was timely. I now realize I had an unrealistic vide on what to expect from vaccination when it becomes available to us. The basics are the key to survival: masks, social distancing, washing of hands, etc.
I am thankful for the additional perspective and reinforcement of why we must focus on basics.
Tim
Chaya, So good to hear from you again. I will bring Regeneron at my next Hem/Onc virtual appointment in a couple of weeks. I don’t expect to get very far with it, but you don’t know unless you try
john
Dear Angel Chaya,
It is so great to hear from you!
You have helped educate me through the care of my husband since 2006.
We do appreciate your great efforts to have us plan ahead with this virus.
Looking forward to part 2.
Stay well, dear teacher!
Patt
Great article, thanks for taki g the time to do this.
Where does bamlanivimab figure in possible options for treatment in mild to moderate (pre-hospitalization)?
Superb, Chaya ! You saved me in 2011, directing me to experts in my “hello” to cll.. I will surely reference
this review with my current team at NIH where I am 4 years into the solo acalabrutinib trial. I will also send it to my friend with nonHL. Finally, to our sons for the best, most readable explanation ever of CLL and its immunity issues. Stay on touch. You are a treasure!
Bud
Great responses you guys. Thanks for the warm welcome. It feels like going back home after many years.
I got a lot of personal emails, wading through them will take time. Here is a response to a question that came up more than a few times.
Should you get the vaccine when it is offered to you? YES. Please do get it. Are you going to mount a robust response to the vaccine, enough to protect you from catching COVID-19? Devil is in the details and your mileage may vary. Here are some of the details:
1. I made it clear in my article, GET THE VACCINE. It might help. Low risk, worth getting it for whatever benefit. Dr. Fauci’s comment is right on target. Every little bit helps.
2. Remember, there are two shots to the vaccine. Even “normal” people cannot hope to have decent protection until the second shot has had a chance to do its work. Don’t be in a rush to declare victory. COVID-19 is a sneaky enemy.
3. Are newly diagnosed, or still in W&W untreated patients, or those that have managed to avoid chemoimmunotherapy regimens such as Rituxan, FCR, PCR, CAR-T, stem cell transplants etc, or treated but only with Ibrutinib or venetoclax likely to have better response to the vaccine? YES.
4. The reason is straightforward. Your immune function is less likely to be damaged and has a better chance of responding to the vaccine.
5. It is not a question of either / or scenario. Get the vaccine, hope for the best. Practice social distancing, masks and other stuff, to the maximum. And, if you are lucky enough to have access to it, negotiate and get regular infusions of Regeneron’s monoclonal antibody cocktail. It is what I call a belt and suspenders approach. That is what I would recommend to my husband PC, if he were still alive.
It is very likely that infusions such as garden variety IVIG, Regeneron’s monoclonal antibody cocktail etc are administered in outpatient clinics or your oncologist’s back office. That is, if you schedule them BEFORE you catch the corona virus. Chances of getting infected in these remote locations is low. I hear oncologists are really hurting for work and funds.
But if you wait until you have been infected, especially if you wait until you have heavy symptoms and your viral load is quite high, you will be going to crowded ER and hospitalized. At that point the therapy options available are less likely to help. UK patient scenario, if you get my drift.
Moral of the story is this: Do every little bit that helps. Belt and suspenders approach is recommended, and sooner rather than later.
Wow. A most-pleasant blast from the past. My spouse was dx in 2008, and is doing well after two rounds of Gazyva + Venclexta (was MRD- for 3 years but relapsed and repeated regimen this year. Now in CR while staying on VEN for 2 years.
I was always grateful for your CLL input, Chaya. And now, this! Yay! I am compiling some notes about next steps, including checking where to get the Regeneron cocktail in our area, so that we are ready to roll if needed. Will bring this up at next CLL check in with my spouse’s hem/onc locally, and with our UCSD team.
Will look forward to learning more about bamlanivimab, too. And will wonder (along with others) about the variant and any tweaks to the MAB they will need to make to adjust for that, if any. THANK YOU!
Thank you for this, Chaya. It’s good to hear from you again. Happy New Year.
Lawson Mabry
Thanks Chaya for this post. One important factor is the treatment the patient is receiving. Your fictional patient Steve was on Rituxan. I was a subject in a randomized trial on the impact of ibrutinib on antibody response to vaccines. 42 subjects with CLL were randomized to receive ibrutinib concurrently with the pneumococcal, tetanus/diphtheria and influenza vaccines (Arm A), or the vaccines first followed three months later by ibrutinib. In Arm A, 15/16 had an antibody response to pneumococcal vaccine, versus only 3/13 in Arm B. Response was lost after a year. Both groups responded to Influenza B, but for some reason Arm B responded better to Influenza A vaccine. Response to tetanus wasn’t listed in the abstract.
conclusion from this small trial – BTK inhibitors may improve immune response to some vaccines, even before the patient is in remission. Clearly more research is urgently needed, as Brian said. Mel
https://ashpublications.org/blood/article/134/Supplement_1/1759/427799/Final-Results-of-a-Phase-2-Trial-of-Early
Sorry here’s the link to the trial I mentioned
Chaya,
Your email in my inbox brought a smile to my face – so glad you are doing well!
It has been 10 years since my SCT for high risk CLL and I am doing amazingly well – no relapse and no GVHD! I feel truly blessed. My docs will not call me cured and say I’m “a little bit” immunocompromised, though I am basically fine…
I will absolutely share your email with my docs at Mayo.
Stay well,
Jayne
Mel:
you have a valid question, and I have posted my comment on it above. Please read the details there.
cll123
Chaya, I apologize for my previous post above which has a number of typo’s. I read your article immediately after receiving it in my email at 4:10PM EST, then posted a reply ASAP. Was/am excited to have you back in the mix. I communicated with you for years and had to guide my Onco Dr to NOT start IV Chemo with FCR in 2011-12 since his treatment protocol was treat once WBC’s reach 100K. I convinced him that we do not need to treat based on WBC’s alone (I learned that from you & also from the many folks in Ibrutinib trials).
Once I started Imbruvica on 4/1/2014 (using it ‘black label’ since I had never been treated for CLL, and I’m in the low risk bucket (another item I learned from you). I had 4 serious adverse effects, and the Onco’s told me to stop the Imbruvica, but I ignored the stop since I had info from many trial patients and I knew about the adverse side effects even if the Onco’s did not. I’m still on the Imbruvica and down to 1 140mg dose/day.
Thanks so much for posting how covid-19 interacts with CLL. The 33% fatality rate is very enlightening. Now a problem for me. My 43 year practicing RN wife has refused to take the covid-19 vaccination which her office has set up for all their front-line workers. I mentioned your information about 33% fatality rate, but she again refused the vaccination (consperacy theories, etc). So, if she contracts covid-19, I’m probably toast.
Regardless, thank you again for coming back to help CLL folks deal with their CLL & covid-19. Last night I sent your link to a number of CLL patients because I’m a professional scientist (Career Exxon Geologist) and your information makes perfect sense to me. I remember your career was with Mobil in their research lab.
OK, thanks again Chaya – so glad to hear from you, as are so many other CLL patients. IMHO you are the ‘Horse Whispered’ of CLL. Cheers, Daniel here.
Hi Chaya,
Thanks for this wonderful article. My group will be happy to know that you’re back. Finally, something positive has come out of this pandemic!
Cheers!
Linda
Chaya,
I can’t express how excited I was to read your name! I jumped to your article and as always was thrilled to see such great information. Am so glad to hear you and Raya are working/volunteering your services to cll again.
When I was first diagnosed in 2005 your writings and findings were my holy grail. I based my treatments on your articles and info thru phone calls. Thank you, thank you for returning. This is huge!
Hoping peace, happiness and good health to you and Raya in the new year.
Linda
Hi Chaya,
A million thanks for this so timely information, it woke me up!, COVID is out of control in the third wave here in Ireland. I
I am supposed to start VO in mid January, but that doesn’t look like a good idea now. I will certainly show my doctor your
article.
Wishing you all the best.
M. Connell
Dear Chaya:
My husband with CLL stage 0 was very sick on our trip to Greece in 2018. He had all the symptoms of current COVID/SARS but it was a year before this outbreak. He was then tested for flu and was negative. It took weeks for him to get better.
The tour we were on had people from China and around the world.
Do you know if the first SARS virus is the precurser to the current COVID 19?
Would he have any immunity to the current version?
Thank you for your info and welcome back to the CLL community.
Oh Chaya! So so good to hear from you. As always you make terrific sense. I will pass this on to my local oncologist and Internist. Lots of food for thought and action. Thank you so much for reemerging. Fondly, Elaine Jacobson Silver Spring
Ibrutinib for 18 months then off it for 20 months as an experiment because it was causing severe photophobia.
I’m feeling good but my wbc is slowly rising (20.3). Normal blood tests except for wbc and Lymphocytes. My doctor says I’m in “uncharted territory” and is leaning towards starting Ibrutinib again.
I prefer not to and am wondering if you have an opinion on this matter.
Grateful
Healthy 84 years of age.
Chaya, here’s a list of CLL doctors posted on the excellent website from the CLL Society.
https://cllsociety.org/toolbox/cll-doctors/
Ditto’s re your comeback – read everybit as soon as got. Diagnosed in 2008, stage 0, got in NIH History Study – told my version not likely to progress. Get tested every 6 months, see oncologist every 12 months – very little change since 2008 – no symptoms. Doc says my immune system not yet significantly impacted so only think about CLL every 6 months. I tried to be pro-active with oncologist and PCP to be quick with response if COVID symptoms – w/o much comfort 6 months ago.
At that time I was trying to get preventative prescription of Hydroxychloroquine and have prior approval/prescription for 200MG/day prescription to use immediately at potential onset. In my opinion, the “anti-Trump” political virus seems to have also infected much of the medical/science community so I no longer feel can trust/believe anything on news programs. However the few scientists willing to put themselves out there on Hydroxychloroquine still seem credible to me but my doc’s seem disinclined to consider, despite my wishes (until something clearly better available). I’ll be exploring new info in your article – but I’m hoping your non-Politically Correct style will enable me to get another Hydroxy opinion from someone like yourself I find more believable/trustworthy. Hoping you will share in upcoming article on all potential treatments.
I will be discussing this and all the other drugs that have been proposed. My honest take on things, independent of politics.
Welcome back. Very informative article as usual. I have sent it to my doctors at Northwell Health in NY.
I had four Rituxan treatments 1.5 years ago. Are you of the opinion that the reduced immunity is permanentl? Or dare I hope that my immunity has rebounded.
What an amazing article and followed with so many facts behind what you say. I must admit it did put some fear in me.
I do not think it is realistic to be able to get that infusion by just asking my oncologist. She is simply wonderful but I think it is not a protocol, so who would make the decision? Would insurance pay for this?
I am going to forward to the NIH and my oncologist at John Hopkins.
Thank you for so much knowledge and effort for us. You have sowed your seeds, now let us hope it reaches the right people so it can be used.
I am wondering like Nica how to get oncologist to doe this. ?? So many drs don’t seem receptive to patients input of their ideas. For my husband I think your right on track but asa patient not sure what will help get this in place for husband, Thank you for your great research on this, Mary Hamilton
Hi Chaya and happy to hear you are back providing us with valuable information.
From the following link I read that Regeneron Pharmaceuticals, the company that manufactures the cocktail may be able to produce 300,000 units in the next few months so the chances of getting it are very low. The cost is estimated at over $6,000 per dose so unless other labs come up with similar cocktails the idea of using it as prophylactic has extremely low odds.
https://www.cbsnews.com/news/what-is-regeneron-covid-antibody-cocktail-trump-covid-19/
Welcome back, Chaya! Such a pleasant, helpful surprise to see your email in my inbox! I read your articles faithfully back when my ex-husband, Gary, was struggling with CLL; you always had very helpful information to pass on to all of us. Thank you for caring for this vulnerable group, then and now – we appreciate you!
Over on Blood Cancer Uncensored I have updated my own article on monoclonal antibodies (great minds think alike as I had published a day or so before you Chaya). Now includes details on how your doctor can go about getting ahold of the Regeneron mononcolan antibody in the USA and elsewhere in the world. As well as how to volunteer for a new long acting monoclonal antibody study. see https://bloodcanceruncensored.com/volunteering-for-a-monoclonal-antibody-covid19-clinical-trial/
https://www.gsk.com/en-gb/media/press-releases/vir-biotechnology-and-gsk-announce-global-expansion-to-phase-3-of-comet-ice-study-evaluating-vir-7831-for-the-treatment-of-covid-19/
Adrian:
Very happy to have company in my proposed preventative use of man-made monoclonal antibody cocktails (Regeneron and others) to get CLL patients a little extra protection.
Logistics, insurance, cost and good communication skills – these are all going to be important. Some few will be able to benefit from putting a plan in place, BEFORE they get infected. For sure it is NOT going to happen when / if that emergency 911 call becomes necessary and the ambulance crew deposits the patient in a crowded emergency room.
A lot of the personal emails I received are on the subject of vaccines. My comments below are a repeat of what I have already written. But as I learned over decades of being a teacher, you tell the story, repeat it, and then discuss it several more times. That is how information gets from my head to yours.
If you are offered the COVID-19 vaccine, PLEASE TAKE IT. This is a no-brainer. As a CLL patient your response to vaccines is not likely to be as robust as a young person in the prime of their life, no cancers in sight. But as Dr. Fauci spells it out, every little bit of help is gratefully accepted. GET THE VACCINE!
Now for some of the background information. Both the Pfizer and Moderna did copious clinical trials before they got emergency approval for their vaccines. Thousands of patients were enrolled in the clinical trials. Did you know NOT ONE OF THE VOLUNTEERS IN THOSE CLINICAL TRIALS HAD CLL?
Makes sense. The manufacturers are looking for efficacy of their products in the vast general population, not specific sub groups of people with particular health issues. That is why they did not include pregnant women, kids, blood cancer patients etc in their trials.
So, we are basing our hope for at least partial response to the COVID-19 vaccines based on how CLL patients respond to other more common vaccines. How well they respond also depends on their particular situation, where they are in their own CLL journey. Have they just finished FCR or Rituxan therapy? Bummer. Both of these and other CLL therapies deplete b-cells, critically important cells needed for vaccine response. Recently diagnosed, untreated (or gently treated) and otherwise fit CLL patients probably have the best shot of benefiting from the COVID-vaccines. But let me repeat: every little bit of help is needed and appreciated.
Are there downside risks to getting the vaccine? Recently there have been reports of high level allergic responses to COVID vaccines, in a VERY SMALL PERCENTAGE of patients who got the vaccine. That is good news and it is the reason why people like Dr. Fauci are recommending everyone get the vaccine, if it is offered to them. Life is all about weighing risks and rewards. The risks associated with COVID-vaccines are small and the rewards can be substantial. GET THE VACCINE!
More caveats. The Pfizer and Moderna vaccines are both mRNA vaccines. This is the first time such vaccines have been used in modern history. These are not the normally used “live but heavily neutered virus’ vaccines used in the past. The clinical trials conducted over the last year have shown a very high level of effectiveness of both these mRNA vaccines, in “NORMAL” POPULATION GROUPS. But I have not come across any credible information regarding how CLL patients respond to mRNA vaccines. We can of course hope to be pleasantly surprised.
Are your risks of dangerous allergic reaction higher? We do not know. The damped down immune systems of CLL patients may actually reduce that risk. On the other hand, CLL folks are at risk of several auto-immune disease (AIHA, ITP come to mind – where red blood cells and platelets are attacked by the patient’s own body). Does this mean your risks are higher? We do not know.
I am all for the glass half full approach. It makes sense. But I also believe in getting extra protection when I can, what I call my belt-and-suspenders approach. That is the whole point of this article. What say you?
It was so good the hear from you again, a great article from you again lots of research on your part. I have been giving myself Hizentra SubQ for at least the past 8 years, I hope this will afford me some protection
Stay well and strong
Chaya!!!!
Oh how I have missed you! Sedona is not the same without you here. I had a 10 year run with ABT-263, pre-drug to Venetoclax. I now am doing Ibrutinib. I also do IVIg every 2 months. I will ask my doctor about the Regeneron. I also will email him the link to this article, or take a copy of it to him this month.
When the pandemic is over and you want to visit AZ again, let me know! We can go hiking!
Missed you so much,
Lori Dobbins
I was diagnosed with CLL in March 2013. I found your website later that year. I was searching for answers. I just wanted to let you know that even though you said good bye in June of that year the information you left on the website helped me greatly. Thanks for your return and update. God Bless,
Thank you Chaya. The timing was perfect, get to see the hematologist next month. I will send your article to him. Ironically him and I were discussing this about 4 years ago but I decided to wait. Not anymore, if given the chance. However there is something else I have been thinking and worrying about. Something I consider bad news. I am also wondering if I am the only one who is thinking this far ahead, never seen anything about it. This is the scenario. More and more people are getting vaccinated. Naturally these people will relax the rules because they can’t get sick (let’s assume all this). It is my understanding that the people who were vaccinated can still be asymptomatic carriers. In other words: the more people are vaccinated, the more dangerous it will be for people who are immune compromised, because of the relaxed lifestyles! Am I wrong here?
Chaya, it is so great to have your voice back in the conversation again! A lot has changed in the CLL world (mostly for the better) in the intervening years but your perspective has been greatly missed in the middle of all of it.
I asked the good Dr. W to weigh in on your missive and while he thinks your approach is a great outline for a clinical trial, right now the reservation is about the availability of and the restrictions applied to the Regeneron cocktail — they cannot prescribe it at MDACC outside of FDA regs. My local onc has a similar take on it, if a bit more skeptical of its potential effectiveness in this setting. I am awaiting a response from my team at Mayo as well. In any case, trying to get the word out!
Thank you again for this surprise, coming out of retirement to once again support us out here, perhaps if only for a little while!
“Some few will be able to benefit from putting a plan in place, BEFORE they get infected. For sure it is NOT going to happen when / if that emergency 911 call becomes necessary and the ambulance crew deposits the patient in a crowded emergency room….”
I’m hearing the way to get this is probably from your CLL specialist (or via their recommendations
) using the exact ctieria for the emergency use authorisation in the USA. And it’s just possible that outside of the USA your doctor may be able to apply for a compassionate use program THEY not one of us should email mailto:CompassionateUse_Requests@regeneron.com but supplies are very limited so having a clear story would help. In my case I’d say “highly unlikely to make antibodies as remains profoundly low on lymphocytes, hypogammoglobulinaemic and recently had a completely flat response to a test vaccine. Was planning to be shortly starting on IVIG”. A story like that with a recent positive PCR swab and symptoms would be more likely to get compassionate use than say someone who’s newly CLL diagnosed who probably will make antibodies. And talking of which getting a negative antibody result to a COVID19 vaccine only strengthens the case for monoclonal antibodies on infection. I do believe that many CLLers will actually respond really well to this new technology. Maybe even most, especially the watch and wait crowns and I would be rushing to get that vaccine and/or potentially getting into the Lilly long term monoclonal antibody study.
Chaya, Thank you for returning your extensive insight, experience, and informative style to the CLL community. As a relatively high risk 13q, un-mutated, with increasing P53 deletions indicated from late 2011 diagnosis, I have experienced a full range of treatments from FCR (2012) to Ibrutinib with Rituxan beginning 2014.Q2 on a “length of efficacy” trial to Venetoclax upon return of the CLL beginning 2Q.2018 to a Stem Cell Transplant (MUD) in 2Q.2019 given P53 and NOTCH1 genetic risks. I am now approaching 2 years out from transplant and nominally “cured” as my donor immune system matures and feeling quite well even though my white cells and neutrophils run along 80% of low normal and only occasionally require a neupogen (zarxio) boost. I get iViG monthly.
This substantial and continuing history with MDAnderson positions me to introduce your article and queries to both my CLL and transplant doctors and, importantly, their support staff. This evening I sent the following e-mail to my primary doctors which I realize does not raise the “vaccine effectiveness” points or full range of possibilities for accelerated intervention or prophylactic use of modern agents. Nonetheless, I wanted you to know that I really appreciated your article, have passed it along to my contacts in both the CLL and SCT departments. If I receive any notable response, I will pass that along if and as appropriate.
Question on Immune Compromise and Covid Risk and Prophylaxis
_______________________________
To Dr. A on Stem Cell Transplant Dept. and team, CC: Dr in CLL Department,
There is much concern and discussion among the immune compromised community about Covid risks and vaccines. I recently received the attached article from a CLL community leader who has a substantial following in the CLL community. While I recognize that I personally am nominally in the post-CLL community after a successful bone marrow transplant, I think the article raises interesting and potentially important questions that may apply to the post-SCT community as well. Accordingly, I though I might pass this along to you for attention and possible response at some point.
Before noting the questions, this is a link to the Chaya discussion which is designed for lay readers. However, the discussion does link to some relevant peer-reviewed papers which may be of interest give your patient community.
https://updates.clltopics.net/4936-avoiding-covid-19-infection
The particular questions that relate to my own situation include the following:
(1) The discussion suggests that a compromised immune system may reduce the effectiveness of Covid vaccines to induce anti-bodies and a fully effective immune response. This effect is referenced to the B-cell suppression effect of CLL maintainance meds such as ibrutinib and venetoclax. I understand that post-transplant, the T-cell recovery takes some time (and my own may be lagging). The question is whether vaccines are likely to be less effective in immune-compromised persons such as the post-transplant population in addition to the CLL population.
(2) The discussion references a materially higher hospitalization rate and mortality rates for immune compromised CLL patients as compared to the general population based on a systematic review of some 98 cases. While the post-CLL component of the post-SCT population is relatively small, I wonder whether the level of immune performance for the post-SCT population (recognizing it changes/improves over time) is different than the data and reasoning noted for the CLL population. Do you have information on how much greater risk the post-SCT population is?
(3) The discussion references several small studies indicating that various monoclonal anti-body therapies may be indicated very early in a confirmed infection and/or on a prophylactic basis for immune-compromised populations. It also notes the benefit of iViG and, possibly, other advanced therapeutics (e.g. Regereon, etc.) on a prophylactic basis having some positive influence for management of Covid risk.
(4) The discussion references the prospect that the population with low immune function could have difficulty clearing Covid infections with the result of supporting Covid virus mutations that could become problematic to the general population. Apparently, there is some linkage of the more-transmissable variant to a blood cancer patient in the UK as an example of this phenomena.
I recognize that you all have limited time and formal role for parsing such information and concerns. However, given the discussion and interesting points noted – including many supported by well-structured (albeit limited) observations for what is a new disease and risk — I thought I would pass this along for your awareness. I would welcome any comment or direction to articles that may speak to the particular risks and or response strategies that those of us in the immune compromised community should engage.
Best regards, Jim Harlan
Jim:
Thank you. I could not have said this better.
I believe Dr. Bill Wierda of M. D. Anderson has also been contacted by one of our patients, for his response to the recommendations in my article. Here is my understanding of his take on my recommendations. This is second hand information folks – please keep this mind. I do not want to put words into Dr. Bill Wierda’s mouth. (Hello Bill. Glad you still remember me).
1. Quarantine, avoid infection, do all you can to protect yourself. How can anyone disagree with this commonsense recommendation? You will not find a single doctor that does NOT recommend it. Guaranteed.
2. Get the vaccine when it is offered to you. Total agreement, risks of COVId-19 infection far outweigh any concerns regarding the vaccines. “Every little bit of protection helps” – Dr. Fauci.
3. If you get infected with COVID-19 in spite of your best efforts, do not try to manage the problem on your own, seek the advice and help of your doctors right away. Again, agreement.
4. Plan ahead of time, don’t leave your game plan to the last minute. Emergency crews, ER staff and hospitals are under a lot of stress. This is good advice to everyone, not just CLL patients.
So, no argument on any of these four recommendations.
As expected, my recommendation of prophylactic administration of Regeneron’s monoclonal antibody cocktail is controversial. RIGHTLY SO. This potential use of the drug falls outside of current FDA authorizations. Yes, I would love to see a clinical trial start at MDA, Mayo, Ohio State, UCSD – any one of these expert centers – that looks at use of monoclonal antibody cocktails in immune compromised patients, as a prophylactic, a way of protecting the patient from getting infected in the first place.
We are living in unprecedented and dangerous times. We are making decisions based on incomplete information, which introduces its own level of risk.
Drugs are used outside of the strict guidelines of FDA approval in cases where the physician thinks their “off-label” use is justified. They are also used in “compassionate use basis” by special dispensation of the company making the drug. Neither of these is something that should be undertaken lightly, and both will take a lot of careful communication between patient, doctor, company and regulatory agencies. I have no illusions that it will be easy to put this into practice – and, with all sincerity, it should NOT be put into practice without careful due diligence. Devil is in the details. Lets not get cocky here.
But I am very happy to see the idea is being discussed. That was the aim of my article, bring this out into the open, get the experts talking about it. As they say, this is a fast evolving area and we all need to stay sharp.
Chaya:
The CLL team at Mayo, including Dr. Call, has apparently been inundated with requests to review your information. They were also pleasantly surprised to see you back in the loop! Mostly they believe you are on the right track and agree with Dr. Wierda’s response. Since the limited Regeneron supply is regulated by region and they can’t prescribe it “off label” in a prophylactic manner, their best recommendation for me was to immediately contact my local care team in the event I get COVID, to see about being put on the cocktail at that time. Once you become a COVID patient, it becomes much more straightforward to potentially get that Rx.
Obviously we all do what we can to avoid getting COVID in the first place, and perhaps down the line those of us who get regular IvIG infusions will get some of those antibodies anyway. Unfortunately at this time I have now heard the same thing from MDACC, Mayo, and my local oncology team about the availability of Regeneron’s MAB cocktail for those who do not already have COVID.
As an aside, for Mayo’s CLL patients (and those with other hematological cancers), they are seeing a COVID mortality rate somewhere south of 30%. They recently just published an article related to that data and I will have to look that one up.
Green Bay T:
Excellent advice from Mayo – as expected. Hello Dr. Call. It has been awhile.
Yes, you should try to get your local care team into the loop as soon as possible, see if you can get the monoclonal antibody cocktail prescribed as soon as you test positive for COVID-19. Of course, that may be a hypothetical situation since you may totally avoid infection by taking good quarantine precautions – a far better option.
Things change over time, and they are changing quickly these days. Keep an eye peeled for changes in the FDA guidance on the subject as well as availability of the monoclonal antibody cocktail. Early bird catches the worm.
Relatively new to this web site and found your information interesting and helpful. I have CLL and now thrombocytopenia. I was in the hospital in February with no platelets and had a series of four retuxan infusions. So far my platelets have been hovering over 100,000. The doctor is not yet prescribing any treatments for me. I do plan to show him your info but won’t be seeing him for three more months.
I did not like hearing about the vaccine not really working for us but thank you for the information for now i know to be a home body for a good deal longer.
By the way, I too am a duplicate bridge player. I only have about 160 points so am still a newbie, but it is helping me stay sane during this epidemic. So far, I mostly play at the Sacramento, CA virtual club.
I followed up with my oncologist/heamatologist this week and he said that while there are definitely those who don’t mount an antibody response to vaccines (particularly those in current treatment), if you have good globulin levels, it will definitely benefit you. My globulin is okay and he said most ‘watch and wait’ CLL patients are advised to have flu vaccine, pneumonia vaccination and now CLL. I’ve never done the flu or pneumonia but will be getting the CLL one. :)
Chaya! I hope you are well. I followed every article once my husband was diagnosed in
2008. I am thrilled to read another extremely valuable synthesis of what’s known.
Thank you for coming out of retirement to help us navigate this extremely dangerous
complication to being a CLL person. All my best.
Welcome back Chaya, you are our CLL Cavalry!
My understanding is there are several trials recruiting here in UK for monoclonal antibodies. Hopefully these drugs will then be funded by NICE.
The thought of staying indoors for another ten years is unbearable so I’ll be asking my consultant about MAs at my next blood test.
Thank you so much for caring Chaya.
Oh Chaya, it was so nice to stumble upon your voice of reason and clarity sprinkled, as always, with humor once again. I have been looking for information about the impact of covid on cll and wondering about the possibility in the future of covid antibodies in ivig treatments.
Though I have not posted comments in the past, I frequently read and reread your articles.
Welcome back.
Chaya -How lovely to see you back, with your sensitive, well researched article. Must be 15 years since we first met in the UK at Howard’s.
I am approaching 10 years post BMT so some of the immune response info relevant although the guidance in the UK via Anthony Nolan charity is I should have the vaccine. And will be following up with my team this week as I am probably in the 3rd wave of vaccinations.
On vaccines I’d just like to say that close family members are crunching the numbers on the trials for approval soon (working in mainland Europe) with another crunching numbers on Phase 1 treatments for covid in the UK. They are working 7 days a week, 12 – 14 hours a day right now and through most of last year. Taken next to no holiday (vacation). Please be assured that they wouldn’t be telling me to have the vaccine if it wasn’t safe. Although they are not at all impressed professionally with deviating from trial protocols so soon ie extending the interval between 1st and 2nd vaccine which is what is happening in the UK. This is from a ‘good practice’ point of view rather than a view on whether the vaccine will work immunologically.
So let’s hope we get on top of this darn virus. Good luck everyone – but as Chaya says, by preparation and planning you can help tilt the luck a little more in your direction.
So comforting to be back in contact. I am an information freak and followed along with your website after I was diagnosed going on 15 years ago. I have the very best markers with my count never above 20-25K.
I signed up for the NIH “natural history” clinical trial and am hoping they will use the cohort to check CoVID infection and mortality rates among the variety of “wait and watch” patients. Have you heard anything about that?
and THANKS!
Brought to tears today after receiving my vaccine! It may not protect me perfectly, but it will be a vital part of my protection. I can handle the rest by wearing my mask, and continuing all my previous efforts. Thank you again for all your information in helping all of us with CLL/SLL.
Chaya,
I am so happy to see you. How I have missed your voice. I credit your experience and advice to helping me n0t just survive, but thrive. Modifying my career. Moving to Houston. I am sure I am not the only one. I will continue reading as long as you continue writing!
OMG .. my dear friend and mentor and life saver. I am preparing a presentation for the women of my college class of 1965 on how to advocate for yourself as a patient, and those people who profoundly impacted my life. You were on that list, so I searched my mail archives for your name and discovered that you had come out of retirement. I must continue preparing, but will then happily go down the rabbit hole reading all of your posts and the comments. I was just thinking earlier today that we needed your wise voice. Facebook CLL groups are not functioning well, IMHO. Thrilled to see you and hear your voice.
Chaya, Great post and great to hear from you again. This website is on my favorite list and we hope to hear from you every once in a while.
Leave a Comment