I must say, this article from Fred Hutch did nothing to brighten my day. But, it did make me wash my hands (yet again). According to Dr. Steve Pergam, clinical and infectious disease researcher at Fred Hutch, patients with hematologic malignancies are at greatest risk from COVID-19. Of course, CLL is specifically listed in this category, just to rub it in.
COVID-19 Particularly Risky for CLL Patients - CLL Support
COVID-19 Particularly Risky for CLL Patients
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Lily_Pad_Master
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Hi, Makes me sad and at the same time angry, we have enough to deal with. How is your treatment going?
Had trouble in the past four months with a sinus infection that won’t go away. Had sinus surgery last week. Went neutropenic a few times through this. Hopefully, the surgery has taken care of it.
Good luck Glenn i hope you heal soon.
Thanks, Sushi!
in reply to Lily_Pad_Master
my ex wife was found to have a sinus growth that was always infected for 20 years. It finaly was removed.
Lily_Pad_Master in reply to
Yikes. Awful. I’m assuming she felt much better afterward, yes?
Hi Glenn, were you able to get off the meds yet?
Hiya, Pete. Nope. Dang lymph node scarring. That standard will go by the wayside soon enough, but for now, it meant I couldn’t be listed as a complete response, even though I’m MRD- blood and bone. This bought with a sinus infection that pushed my immune system to the breaking point notwithstanding, I’m happy to still be on the meds because they give me a better chance at a deeper remission. I do see the finish line up ahead, however. Then, I’ll be on a safe Lily Pad having my medication holiday until the dang clones come back, at which point, there will be something new to send those clones back to the hell from whence they came!
Been off the meds since mid January. Going in tomorrow for first blood work. Hoping all goes well.
Good article. I far prefer the blunt truth to false homilies. It's the unsweetened facts that may well be the lifesavers.
Indeed. Glad you appreciated the post, sobering as it may be.
Great article. And I appreciated the practical advice on what we can do to keep our immune systems as strong as possible.
I need to stop biting my nails. That will be my downfall.
Scary article and there were only 18 cancer patients in this study and they may have had other co-morbidities.
I wonder how they drew their conclusions from that small a pool? Maybe because we’re at higher risk for everything?
Clearly our lymphocytes are depleted on treatment but if our neuts are good and our Igg’s are ok, I think we are at higher risk but it’s not as grim as this article leads you to believe, in my opinion.
Check out this link to my previous post article healthunlocked.com/api/redi...
Jeff
I think they drew conclusions because there’s just not a whole lot of research to go on right now, but that picture will change is the infected population increases exponentially. The article you posted is a good one in that it clearly explains why co-morbidities add extra risk.
So far, the prevention messages are clear. Forget the N95s. Wash hands, stop touching the face, have a barrier (like a paper towel) when touching any doorknob, and avoid crowds.
Sounds like my daily routine.
Just need to stop picking my nose.
I think the devil is in the details of this article and when I drill down on those details, it doesn’t tell me a whole lot I didn’t know before.
The article is largely based on a Chinese study where they looked at a relatively small sample size of 1590 people with corona. 18 of them had cancer, and they found that significant how? It’s just over 1%. I would ha e thought much more
Of the 18 they found them to be older, mostly smokers and a number with polyps. They admit this is way too small a sample size to draw any conclusions.
With no real data to support his claim, a doctor said those with blood cancers are most at risk. Okay, but we pretty much know already that people with blood cancer are most likely to have suppressed immune systems. I consider myself at more risk if I get corona than most. There is no data in the article to support that, but I don’t need data to tell me immune compromised people are at risk in any epidemic.
Just because we are in a high risk group doesn’t mean that we will all have some awful response to corona. The fact some 80 year old smoker in China struggles with corona doesn’t mean a 60 year old non smoker in early stage Cll will have the same or worse problems.
We have many people in here in watch and wait who are very healthy. Are they more at risk than an eighty year old with a pacemaker or with emphysema? Of course not.
CLL is too heterogenous to draw any blanket assumptions about how we will do with corona. We need to be smart. We need to take the same precautions others do. Those of us who get frequent infections, who have low wbc counts and who are older with other comorbidities need to be on higher alert and consider more drastic measures, even self quarantine.
It’s helpful article to post, I just hope people read it and the Chinese study before getting too worked up. We are all on a Cll spectrum with some on here with nearly fully intact immune systems and others very severely compromised. We have different risks and I think this doctor was making a generalization and speaking more about people with advanced blood cancers.
That’s no to say as a whole, those with blood cancers are at greater risk. I think we are. But many people on here are way better off than some elderly people living in nursing homes who have no reserve to fight a virus like this.
Jeff, not every article posted to inform is a “scream of panic” and, so far, I haven’t seen any replies to this post that suggest panic.
I posted this: (A) Because it is from a credible source. Not some fly-by-night YouTube channel or conspiracy theory rag. (B) Because it was, in fact *not* based on one study the Hutch doc himself said was flawed, but was based on three separate studies and, additionally, I’m guessing, on what he is hearing from his colleagues around the world and (C) Because the article hit me like a ton of bricks this morning. I asked my care team if I should be working in the office if I don’t have work that must be done at the office and they said “No. Work from home.”
I have been battling a sinus infection and neutropenia for four months now, so far, hanging onto my treatment by a thread, I suspect. Of course you are correct when you say there’s a wide spectrum of disease progression across all of us. You also say, on what appears, logically, to be the far positive end of that spectrum, that some of us have “...nearly fully intact immune systems.” Do you know for certain that a nearly fully intact immune system is sufficient for fighting off COVID-19? I know I don’t. I just know I barely make enough Neuts to hold off a sinus infection without Neulasta, but that’s just where I am right now with my treatment. With all due respect because you’re a knowledgeable guy and an important member of this community, when you say “I think those with blood cancers are at greater risk,” I prefer to defer to the doc at Fred Hutch and, most importantly, to my care team at Dana-Farber and accept that those of us with blood cancers *are* in fact at greater risk.
What does this mean in practice? If you work, run, don’t walk, to get your ADA in place. What is a reasonable accommodation for you if this virus continues its exponential expansion? For me, a reasonable accommodation is to work at home every day I don’t have an event I’m leading at work.
It means washing our hands after touching something. It means having a barrier between our hands and doorknobs. It means training ourselves to stop habitually touching our faces. It means I can’t go to that Talking Heads tribute band concert I wanted to go to next month or to the performance tonight at the New England Conservatory of Music.
I respectfully submit you are mistaken when you say there are no data to support whether any of us may be at greater risk from COVID-19. I’m not saying you are wrong, just mistaken. There are data, and the picture is evolving rapidly. This means the picture the data paint is still hazy, but through the haze, there seems to be a sense that hematologic cancers—cancers that attack the very immune system most needed to fight off a novel infection—pose the greatest risk. I’m guessing you are correct that those of us in watch and wait are probably likely to be at less risk than those of us in the middle of treatment with immune systems fighting to keep up. Does this mean they should be less vigilant?
The actual mortality rates are not yet fully known. But, that early flawed study that seemed to suggest a 1% increase in death rate can be looked at in one of two ways: “Well, it’s only a 1% increase” or “It’s a doubling of the low-end, conservative, estimate of the death rate. Does the flawed study suggest a rate that’s higher than it really is or lower?
The one true best answer for all of us isn’t going to be found in this discussion. It’s going to be found in the conversations we have with our a care team providers, and that, after all, is the main reason I posted this. Not to cause panic or even to gin up discussion here. Let’s all have the discussions where they matter. If you want to be sure, call your doc. They won’t have all the answers because no one does yet. But, they’ll point you in the right direction.
I've been following this John Hopkins CSSE site for up to date known stats on the virus in specific geographic areas
Hello, I am kind of confused by your reply. Maybe I did a poor job with my first response.
I originally wrote that I thought the article you posted was helpful. I did not question the source as not being credible. I do think the way the author the article implied that everyone with cll is in some ultra high risk category and that the data cited by the author he relied upon, did not support that.
The only data I saw was a Chinese study about 18 people in China who had cancer. I did not see any data specific to blood cancers. I do not think a small group of older Chinese people, many who are smokers, with various other cancers is a good control group to draw conclusions about folks with cll.
I did not see any data in the article specific to blood cancer. You say I am not wrong, just mistaken, a distinction that eludes me. I am no expert and get things wrong all the time, so I don't mind being corrected. Point me to the data. Corona is so very new, it would seem to me hardly enough time has passed where they would have studied it in connection with cll.
I did write that I do not need to necessarily see data to know those of us with cll are at increased risk with corona. I assume, in general, we are at increased risk with all types of infections, viral and bacterial, including corona.
My concern with the article is that some will interpret it as meaning among all the people in the world, those with blood cancers have the highest risk. I personally do not think those who are in watch and wait with normal neutrophil and immunoglobulin counts are at greater risk than elderly people in nursing homes.
Finally, in no way did I suggest that people in early stage cll be less vigilant. I did write that because we are so heterogeneous with our cll, the precautions we need to take vary from person to person. I stand by that. Some people on here have jobs and cannot work from home. Some might have a child getting married in another town. Some rely on public transportation to get to work.
I do not think someone in early stage cll in Atlanta needs to stop taking the bus to work because of a few corona cases in the city. Someone who has been having frequent infections and requires ivig infusions might consider more drastic measures, perhaps even going into self quarantine for a while depending on where they live. I don't think the person taking the bus to work is being less vigilant, certainly they would be at less risk if they never left home.
I still think the article you posted was helpful and hope I did not offend you by commenting on it. I could be both wrong and mistaken. I think if they do some retroactive study when corona is over it will show that in general, that people with compromised immune systems and other comorbidities were at most risk. And while I wouldn't be surprised if there is data to support the conclusion that among everyone in the world, blood cancers are most at risk, if there was such data in this article I missed it.
I hope you are doing well. I just got over a sinus infection as well and it had me feeling quite miserable.
Hey, Jeff. And I probably shouldn't have responded when half-asleep!
The article itself references the two other studies, one of which is from the Chinese "equivalent" of our CDC.
Personally, I don't know if I was "immune-compromised" early in my disease course and all counts were good. I never got a definitive answer from my care team. They told me I was safe to travel (planes and trains back then). But, they also wanted to be certain I received my flu shot every single year. I don't know about the course of the disease when it comes to the production of neutrophils and IGGs. Are neutrophils produced at the same rate when there is some impact on the bone marrow, but not enough to show in bloodwork? I mean, when it comes to neuts, it's all good until an infection comes along and they're not able to replenish as quickly. Does that only apply to that point in time when the bone marrow is fully infiltrated?
Every day here in Boston, there are new alerts, both through work and through my tertiary source, the media. People here are certainly being told how to manage their commutes on the crowded T and bus lines.
Assuming people who are recently diagnosed or in watch-and-wait are no worse off than anyone else when it comes to COVID-19, then I'd ask those of us in that category to do exactly what everyone else is being asked to do. Wash hands frequently, cough into your elbow, don't go to work if sick, avoid crowds, and use a barrier between your hand and a doorknob. Even if you won't get as sick as I might from the coronavirus, you might just be "the butterfly that flaps its wings there and brings the dang thing here!" It's all about the herd.
Finally, and this is probably the most important thing I have to offer people here who hold down jobs. Ask your doctor if she would be willing to support you in securing an ADA (Americans with Disabilities Act) accommodation. Your accommodation could be simply to work from home when your doctor advises based on local coronavirus trends. That way, you keep your job and don't get sick.
Thank you so much for your posts, you are so knowledgeable, thoughtful and insightful.
I often read but almost never post. I thought this deserved a post.
I am not greatly knowledgable with the medical side of my CLL, clearly not intelligent enough.🤪
To me it just seems that whatever the stats will be, we will still be no wiser as to what else may be underlying or how each individuals body will deal with whatever comes it’s way. I think that’s what scares me the most about this disease, I constantly feel like I am in a game of Russian Roulette.
Stay safe all follow guidance given and practice common sense approaches ... much love x
I'm not so sure about this article. It really tends to generalize and over-classify to the point where the data (what little there is of it) does not make sense. First of all, as @Justasheet1 said - there are very few cancer patients in the quoted study and they had a great deal of other co-morbidities.
Immune-suppression of CLL patients is highly variable. We all know that. Those of us with somewhat indolent disease (or early on in disease progression) may not be as immune-suppressed as people who have recently undergone treatment. The author is basically speaking to cancer patients as a whole - and does not look at different stages of hematological malignancies. Even then - no two of us has an identical disease profile. Disease profile is likely extremely important when looking at risks for Coronavirus.
This article makes the one mistake that I see in so many articles on Coronavirus - and it makes me angry. Greater than 50% of men in China smoke cigarettes (women do not). This is totally different than most Western countries. In fact, I have read that in excess of 40% or Chinese doctors smoke cigarettes, whereas (at least in the US and UK) that number is a few percent at best. Clearly smoking will have huge implications in the outcome of a respiratory illness. You simply can't mention it and proceed to ignore it when using data from China.
I guess what I am trying to say that while degree of immune-suppression is relevant, there are a whole lot of other parameters that can make this drug hit harder with certain patients.
We need some real information from someone focusing on CLL specifically. Unfortunately the US and UK have not enough confirmed cases to get to this point. The fact that researchers use confirmed cases is alone reason to be a bit skeptical of the data - as (overall) only very sick patients are tested.
Sorry, but at this point I really feel we do not have enough information just yet!
I agree with your criticisms of the article, as do the experts cited therein who acknowledge and appropriately qualify their statements. That is why I did not qualify my introduction of the article. I assumed that those who would read it would appreciate that these experts are saying "We don't know yet, but it seems like this could be the case." It's always important to read past the headline. Personally, however, when there's an infectious disease specialist and an oncologist/hematologist at a renowned cancer center that's at the epicenter of COVID-19 in the U.S. and they both say those of us with blood cancers *may* (emphasis on MAY) be at particular risk, I, personally, am not going to wait for more data. I'm going to take the precautions recommended by science as advised by my care team and, further, I'm going to do everything I can do *now* protect my job.
I'm not sure what we're debating. It seems in this environment, everything has become so binary "Yes it is! No it isn't" "You're wrong. No, you're wrong." Being angry at an article or one who posts it doesn't do anything. Hand washing does.
Lastly, for those following along, I can tell you I personally know almost next to nothing about this. Your answers aren't here, they are with your care team. Now might be a good time to check in with a few questions, particularly if you're concerned. You might just find your doc telling you what mine did when I was in watch and wait: "Go ahead, travel." Of course, this is a little different...And, it might also be a good time to have a confidential conversation with someone in HR (if you work) about the ADA (if you're in the States) or whatever equivalent there may be in your country.
Glenn,
Working Safely from Home
Glenn: I guess we are in agreement. All I am saying is that we have really crappy information to go on regarding CLL and COVID-19. We can talk to a lot of CLL medical staff and get a good assessment of how to manage our CLL. But, we can talk to that same staff and hear absolutely nothing reliable when it comes to how to conduct our lives today 3-10-20 (at least here in California).
CLL is very potentially life-threatening at some point in our lives. Now CLL seems possibly life threatening in our daily lives. We can’t live in a vacuum in these modern times. We can limit our activity (work, etc), but we still have the daily mundane things to do that are part of life - going to the market for food (or toilet paper!), bank, etc. Amazon can’t totally take care of our need to “get things” to deal in our daily life. Most of us to not have “staff” that can take care of all our daily tasks!
Travel - no. Cruises — definitely not! But we need competent medical advice as to how to conduct our daily lives - even in the shadows.
I personally am concerned because I don’t know how immune suppressed I am - if I am at all in the early stages of CLL. My blood counts have been low relative to most (ALC ~10K) - and I have not had a cold in 10 years or a flu in at least 20 years. No infections as well. But nevertheless, I still have CLL - at least for 2-3 years. So questions fill my mind .... If I go to the supermarket today, what risks am I taking? I know nothing of any risks of any activity. Life is risky and we act accordingly. BUT we know nothing ..... Buying a loaf of bread could be a simple boring experience, or it could be a major life risk.
My frustration is that I don’t know what to do every time I need to deal with society. All I read are really poor excuses for scientific evidence to describe my risk. I constantly see references to Chinese patient data that really don't mean much to me in this neck of the woods. Its not just that Fred Hutch article, but all of them. They all are so flawed that they don't give me any information to run my daily life. Daily life is essential. I can forego the concert or ski trip for now.
So, do I eat stale crackers, or get that loaf of bread? It all matters how immune compromised I am. We all have that predicament. This outbreak/pandemic is going to be with us for a long while. None of us can really say to hide for the next 2 months and it will all be over.
I really just wish that someone working on CLL would say something that addresses the problem. The key to all is our individual levels of immune suppression.
Given your consistently low ALC over what could potentially be 5 yrs, no lymphadenopathy and no history of recent infections, I wouldn’t be disproportionately worried if I had those levels. Presumably your neutrophil level is normal along with your immunoglobulins? Any serious co-morbidities such as Diabetes, cardiac issues, hypertension, smoker?
You’re not in the over 70 higher risk group and seem relatively well. I’m naturally only giving my impression based on the information you’ve given, but your immune suppression doesn’t sound significant presently and your CLL is pretty indolent. I wasn’t even diagnosed until my ALC was over 12.
Unless you’re in a high risk area I’d say get your loaf of bread confidently and wash your hands when you get back! 😉
Best wishes,
Newdawn
Agreed! Buy the bread. Back away from folks who are coughing/sneezing/etc. Do your best to avoid touching your face and keep that cellphone clean. About the only thing I'd modify over what Newdawn wrote is that I, personally, would wash my hands before leaving the supermarket. And, I'd be sure to open that restroom door with a paper towel as a barrier between myself and the handle. And if they don't have paper towels (weren't air dryers a lovely idea?), I grab toilet paper. And, for those public places that have not yet figured out they need to have a waste basket near the inside of the bathroom door, I (a) throw the paper towel on the floor and (b) ask to speak to the manager to have them move one into position!
Ooo air dryers are not such a lovely idea LPM (or was that intended to be irony?).
‘Air hand dryers suck up fecal matter from the bathroom air and spray it onto users' hands, a new study published by the American Society for Microbiology found. ... Researchers found only six pathogens in bathrooms with towels for drying compared to 254 in bathrooms with hand dryers.’
The hands are not actually a risk until they come into contact with the eyes, mouth, nose etc. Apparently we touch those over 90 times a day without realising. The virus can’t penetrate intact skin so hands off the orifices at all times. That’s when a mask works! 😊
Regards,
Newdawn
OK, so this is officially the most disgusting thing I've heard all day!!!! I had no idea.
We’ve discussed it on here before actually and there’s lots of evidence to suggest hand driers are not hygienic 🥴
Newdawn
As of 8 months ago - ALC has been low. I’ve been “borderline” pre-diabetic, but never beyond that. I’m in good shape, but about to turn 67 — inching close to the over 70 age demographic. But with a physically disabled wife - it is all on my shoulders to make life happen here. Get sick - no ... I don’t have that luxury. I haven’t had that luxury in years, which is why I’ve been lucky to have not run into much illness.
But thats my point about many of us. We are being fed data from China - and not very good or recent data at that. Their data is suspect both politically and scientifically. Then again, even the US seems to be making testing a near impossible task. Without data, we have to stick to what is known. But I could go on for hours talking about how inappropriate the Chinese data is to most everyone else.
I guess I’ll get that loaf of bread - knowing full well that it is always a risk. (Not worth the waste of time to go out for toilet paper!) Oh yes, ex-smoker here - though I haven't had one since 1988 (31-32 years). Having been a smoker years back, I can see how the Chinese population will be targets for respiratory viruses a lot more than non-smokers.
I guess my concern for all of us is that our treating physicians spend a little time assessing our risks. This has become in March 2020 - up there in importance with treating us. COVID-19 has changed the clinical concerns for CLL. Those concerns are not just going away when the weather gets warm.
Thanks. Useful article.
To the general discussion I will add this. And this is how I understand it. I could be wrong. With everything I have read and heard about CLL, unless you have been tested and know your immune system is not compromised, you should assume it is compromised.
BeckyL
Hi Becky. I hope you are doing well. Things good?
When I first started being seen at Dana-Farber in 2013, about a month after my initial diagnosis, my doc said a few very memorable things: (1) If I didn’t know you had (then described as) small b-cell lymphoma, I wouldn’t be able to tell from your bloodwork (2) Yes, as a consultant who travels, you can continue to travel, just use good hygiene like everyone should and (3) In response to my wanting to know if I had a compromised immune system, he was equivocal. Probably, I did not have a compromised immune system. And, what was also true was that my immune system was probably already infinitesimally beginning an initial slide toward some sort of empirically verifiable—even if only technically—diminishment.
I’m 100% certain there is no one in this CLL community here who can tell us where that critical point is where we may be more susceptible to harm from a virus that has never before been inside a human host than are others who do not have CLL. I’m not dissing this community: I’m also 100% certain there’s no one outside of this CLL community who could tell us.
Thanks, Glenn, doing ok except for seasonal allergies starting up early! I agree up to a point. I just think in the present environment, knowing we have CLL, if we don’t know our immunity level, we should use extra caution in going about our daily activities. There is no way we can live in the world and be germ free, and we can make ourselves crazy trying to be. As others have said, hand washing and not touching our faces is the key.
Great article! Thanks so much for this update.
I am a lii
Hello
When I was diagnosed in Oct last year my specialist told me to keep a distance from people when speaking to them - stay away from people with coughs and colds - do not go to any big social gatherings and as germs are mostly passed through hands keep them clean.
This is the main advice for COVID-19.
Take care and stay safe x
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