Leukemia And COVID-19

[wizzard166]

I wanted to get the link to this article on our site the moment I read it this Morning. I've seen so many questions about whether or not CLL patients are at more risk with COVID 19 than other people, and how we would fare if we contracted this new bug. I think this article is a huge step forward to answering that question, even though I hope or wish it were not true. Here it is:

washingtonpost.com/health/2...

[Newdawn Administrator]

Looks like the one that was posted earlier wizzard.

healthunlocked.com/cllsuppo...

Newdawn

[hsouter]

Yes. This quote is particularly troubling:

“The newly published study on cancer patients and covid-19 showed that patients with leukemia, lymphoma and myeloma — all diseases in which cancer attacks the immune system — were among those with the highest rates of severe problems.”

Let’s hope more research comes out soon and a vaccine to which CLL patients respond well....

[FRL0612 in reply to hsouter]

Does anyone know whether or not the vaccine, once produced, will be live, or will we need to wait even longer for a non-live version🤔

[KatieBlue in reply to FRL0612]

It is unknown. Also unknown is how long immunity, whether from a vaccine and/or exposure, will actually last, or even if a vaccine will work at all. Too many unknowns.

I too am concerned as many are calling for immunity passports in order to go out (to work, groceries, be in public) and those who aren’t able to take certain vaccines will have a lot of anger directed towards them.

[Big_Dee in reply to KatieBlue]

Hi KatieBlue

So the hysteria has reached the point that they are returning to the old days of banning leapers.

[KatieBlue in reply to Big_Dee]

Yes, not even a grace period for shouting “unclean” I’m afraid.

Within a day or 2 if the revised mask recommendation I watched video a man being forcibly removed from a Philadelphia metro bus for not wearing a mask. One officer grabbing leg from outside, 2 officers inside and 5-8 or 9 more milking around once they pulled him off. So I can’t begin to imagine how vilified those who are unable to have a vaccine will become.

I’ve done various screenshots along the way. I should have saved the link of an outraged social media post about not buying or selling, no travel without proof of vaccine.

And conspiracy theory or not, there are companies / Educational institutions working to create bioIDs that can’t be forged nor forgotten at home.

sciencealert.com/an-invisib...

[Emerfly in reply to FRL0612]

I asked that same question on a CLL WhatsApp group last night , also if they find a treatment will it work on the immune compromised ? No one knows , we are in unchartered territory is my own conclusion from what I’ve been reading .

[albie58]

Good Morning!

Where is the actual link to the ASCO article as I'd like to see the actual stats and those patients with leukemia, who had Covid. Also hoping they have more than just 18 patients that are being reported on. Thanks!

[wizzard166 in reply to albie58]

The article is referring to a study in Wuhan that involved over 500 patients. The study with 18 patients was one done here in the US. I wouldnt pay any attention to a study with so few as 18 patients, but the one from China is certainly valid with over 500 patients. It actually had 105 Cancer Patients and 536 Non Cancer Patients, and the death rate apparently was three times as high in Cancer patients; in particular those with Blood Cancers such as Leukemia.

[Newdawn Administrator in reply to wizzard166]

I be interested in the additional factors such as advanced age and co-morbidities. Generally concerning however but not surprising.

Newdawn

[Justasheet1 in reply to Newdawn]

Newdawn,

This post explains our situation very well unfortunately.

healthunlocked.com/cllsuppo...

Jeff

[wizzard166 in reply to Newdawn]

I'm sure that the older patients, and those with Diabetes and Heart, have even higher rates of serious problems with COVID. If the grand total had 3X the incidence of serious response to COVID, than the group you mention is likely 5X

[Hidden]

death rates 3 times higher would be about 10 percent. That still meant 90 percent survived.

i also suspect this is close to other co-morbidities/old death rate.

this is like a drug headline when a study says a drug is twice as likely to have harmful effects then the fine print says normal IS 1 PERCENT- so the drug makes it 2 percent.

think about it.

[wizzard166 in reply to Hidden]

I think the article didnt say death rate, it might have been serious harmful and fatal response to COVID. Your thoughts on ten percent death rate is kind of interesting, in viewing it as fine because 90 percent didnt die, but it lacks an understanding of the total effect on society regarding inability of the medical system to handle that load at one time, in addition to the economic affect on society. If you havent noticed, at the present much lower rate of fatalities, the effect on our medical system and economic effect on society has been beyond Traumatic. We have put hundreds of billions on dollars into the system twice, and it doesnt seem to be solving the problem. Then again maybe the headlines, or media exageration, is at it again and things are really fine

[Hidden in reply to wizzard166]

i think you misunderstand. I'm not poo=pooing people dying. i'm just saying the death rate for older people/and one with co-morbidies/old is just about the same.

it is what it is -we are what we are.

[schmitthj007]

Thanks so much. Read the article and the study that was cited. This is very preliminary data but the best we have so far. Included were 105 patients with cancer and matched (reasonably well) with others having Covid 19 but no cancer. Only 9 patients were classified with blood cancer and we do not know what kind or at which state. Of course a lot of data we would like to know is not there and we cannot draw too many conclusions from that. Mortality among this group was very high with 33%. But it also means that 2 out of 3 survived. I honestly thought mortality rate would be higher. Again we cannot draw too many conclusions for us from this paper.

Best

Heiko

[wizzard166 in reply to schmitthj007]

Thanks Heiko. I didnt know that only 9 of the 107 patients had blood cancer. Maybe I read the article too fast, or you found that data in another article on the same study. I put up posts on articles I see that I feel can be usefull to our Members, and especially if it looks like it includes newer data and information; such as, the Washington Post story last week on blood clots. All of a sudden for many days after that article, the television coverage was discussing young adults with strokes due to clots. I thought this article on cancer patients and percent with higher rates of fatality was good to be aware of. All I know is I better stay inside as much as I can now, and be really careful with distancing when the local governments start saying it's alright to go to restaurants and movie theatres again. Maybe I, and many of us, better be careful about getting too close to too many people during the early days of loosening the standards.

[AussieNeil Partner Administrator in reply to wizzard166]

I would not pay much attention to any CLL data from China, because CLL is much more rare than in Western countries and the CLL genetics slightly differ: ncbi.nlm.nih.gov/pmc/articl.... Interestingly, despite the slight genetic difference "Asians including Japanese immigrants to USA continue to have a low incidence of CLL".

[Big_Dee in reply to wizzard166]

Hello wizzard166

The CV-19 is just one of many things which CLLers can contract, so I am doing the same things I did before CV-19 to protect my self. Wash hands, no handshakes, no hugs and stay away from coughing people. I will still be going out into public, but armed with sanitizer. Blessings.

[Newdawn Administrator]

The Chinese have already postulated that it appears to have been a different strain there. As Neil says, hard to rely on this data. Statistically, I’d be amazed if 9 of the patients had CLL because it would be an over representation here let alone in an Asian country with a much reduced incidence.

Newdawn

[bennevisplace]

Heiko beat me to what I was going to say but I'll say it anyway. For those with CLL this may be the best comparative study yet, but it's no reason to panic.

3 deaths out of 9 patients with lymphoma, myeloma and leukemia doesn't tell us which patients have or had CLL - maybe none - or anything about disease stage/ frailty/ comorbities.

No denying a compromised immune system makes us more likely to catch coronavirus - IF we are exposed to it, and right now I would be a racing certainty. But our shielding behaviour, honed by acute awareness of our extreme vulnerability, makes it unlikely there will ever be a large enough sample of CLL patients in a single Covid study to show how well or badly we as a group fare once we have the virus, let alone what are the decisive variables within our group. It's still quite possible that other things being equal a weak innate immune response makes many of us less susceptible to ARDS, the main cause of death in Covid cases.

[Justasheet1 in reply to bennevisplace]

Without functioning lymphocytes to make immunoglobulins, we’re not likely to fight this off well. Everyone needs to stop comparing each other to others.

If you have CLL and your Iga and Igm is low, be vigilant.

Jeff

[bennevisplace in reply to Justasheet1]

Amen to that!

[PaulaS Volunteer]

My home city is supposedly a "hotspot" for Covid. Latest figures show a total of 1928 confirmed cases of Covid, and 193 hospital deaths. (City's total population is about 730,000).

But my haematologist - who sees all the CLL patients hospitalised in the city, told me last week that he'd had "several" CLL patients with Covid, and all were recovering.

Whatever the statistics might show, that doesn't seem too bad to me. It won't mean I'll be less careful about social distancing etc, but I found it somewhat reassuring.

Paula

P.S. I made a big mistake with the figures when I first posted this. The figure of 1928 is confirmed cases, not deaths. Hospital deaths were only 193. My apologies - I have now corrected this.

[Justasheet1 in reply to PaulaS]

Amen to that too!

[stewie]

Hi wizzard166

Hope your well read the study a while ago and I didn't take much from it at all , as case study's go it's not one I would worry about it's pretty poor and lacking real detail , that said we know we are at a higher than others but what percentage that is compared to other groups time will tell to early at the moment we must remember it's killed around 2000 + people with no underlined issues . My consultant told me a couple of his patients had just recovered from covid 19 both were hospitalised but both now discharged

Stay safe

Stewie

[Jonquiljo]

When it comes to bad scientific data, it really gets my fur up - and this article wins the prize as one of the biggest pieces of junk ever published. I am surprised that a excellent news outlet like the Washington Post wrote about it. Then again, there is a scarcity for news and pretty much anything about COVID gets published these days. Let me outline all the bad parts of what this article are all about - and I take this from the original article (not the Wash. Post synopsis) see cancerdiscovery.aacrjournal...

1.) Never trust an article where there are almost as many authors and institutions as there are test subjects. It wasn't quite that bad - but dozens of authors means to me that it was a social media piece, not a scientific study.

2.) Never listen to China (or Chinese data) about COVID. Their data is filtered by the Chinese government (among other things).

3.) The study had only 105 cancer patients, of which ONLY 9 had any form of blood cancer. 9 patients! To top that, CLL is a lot less common in China than in western counties. In the midst of the 9 myeloma and lymphoma patients, were there even any leukemia patients? Were there any CLL patients? With a sampling of 9 people, no data can be that significant. Does anyone even know if CLL patients get diagnosed at early stages in China? It is, after all, a rare disease that is expensive to diagnose, let alone treat.

4.) All 105 cancer patients came from Wuhan, China - the epicenter with the highest death rate. Wuhan was also the place where the hospitals were totally inundated and overwhelmed with patients. In Wuhan, a much higher percentage of the population died because the hospitals had an overwhelmed ability to take care of them. This alone skews the numbers in a very unpredictable way.

5.) The authors even admitted that, "data collection and research activities were not a priority of the hospitals." A tiny sample spread over 14 hospitals that were probably too busy to even collect proper data for the study. They were too busy trying to save lives - not collect data.

I could go on ... but I think I have said enough. This article belongs in the trash bin, which is where my copy will go. At first glance, something coming from the Washington Post seems like it will be credible. If you then go to the original article and read what was done - it becomes likely that the Washington Post did not scrutinize the data that they were reporting. wizzard166 - I really would not sweat over the data presented by the Washington Post or these authors. I'm sorry if reading this stressed you out! I think the information that PaulaS posted above is far more accurate and reassuring than any after-the-fact data compilation from Wuhan.

Frankly, I think - in a couple of months time - the anecdotal data coming from this forum will likely have a lot more to say than these 38 author (I counted them!) articles using very poorly collected minimal data. Yes, some good people with CLL have succumbed to COVID-19. Then again, a lot of people without CLL have lost their lives to COVID-19 as well. Good luck to all of us!

Jon

[Vakraas]

I think others have covered most of the points I would make, but just to join the chorus:

The article outlined the most extensive study of its type undertaken so far, so shouldn't be dismissed out of hand, but there are clearly serious issues with assuming its applicability to CLL patients:

1) It makes no attempt to distinguish between types of blood cancer, or between stage of cancer, never mind between the different types of acute and chronic leukaemia.

2) The sample size of blood cancer patients (9) is very low.

3) The sample is geographically narrow.

4) I've had the opportunity to discuss my own situation (W&W for 14 years; CLL very stable) with my haematologist (Dr Follows; Addenbrooke's, UK) via an e-mail exchange, and his statement was that while he couldn't go against government advice to shelter and self-isolate, and he was also careful to note that he wasn't in a position to offer certainty, he had been in contact with colleagues in northern Italy to discuss their regional morbidity rates, and based on the information currently available to him, he didn't currently think I was at more risk than any other healthy 51 year old male.

Now, I understand that everyone will want to take point 4 with a pinch of salt. CLL patients are a heterogeneous bunch, and what applies to one person doesn't necessarily apply to others. Also, I'd always recommend caution about relying on a personal anecdote from an anonymous internet poster (which is what my point 4 is). Nonetheless, based on the information available to me, I don't think the Post article and associated study are robust enough to replace the expert advice on my personal situation from my haematologist.

At best, the cited study suggests that cancer patients are a bit likely to die of COVID-19 than patients with no underlying health condition; which I hardly think is the shock of the day (and given how COVID-19 typically kills people, I doubt anyone needed a clinical study to conclude that lung cancer patients were likely at risk). But it also suggests that the overwhelming majority of cancer patients will recover, and it's functionally useless for differentiating between different types and/or stages of cancer.

[claree_ford]

Yes, I understand what you’re saying about point 4 - but, trusting that you have reported correctly what was said (which I’m sure you have), I do trust Dr. Follows - not my consultant, (know him personally, first of all as a medical student - him, not me!) and even with all the back pedaling I would happily take his word for it as being more likely to be true than other sources.

Let’s hope we all keep well and none of us have to find out whether we are more likely to develop complications from Covid19.

Keep isolating and keep well.

[PaulaS Volunteer]

Abject apologies - I made a big mistake with the figures when I first posted my reply to this post. The figure of 1928 is confirmed cases, not deaths. Hospital deaths were only 193. My apologies - I have now corrected this.

I still find it encouraging though, that my haematologist had "several" CLL patients with Covid and all had left hospital and are now recovering at home.

Paula

[jerard59]

I know I one NHL patient on WW that has survived Covid-19. He is 58 with no symptoms and is active and fit. While it knocked him on his butt he never needed hospitalization and has fully recovered. So Covid isn't a instant death sentence. Just practice social distancing, good hygiene, wear a mask whenever near people and stay positive if you get it and by all means keep your specialists in the loop with any fever during this pandemic. Stay safe out there.

[Emerfly]

Thank you for sharing . Knowledge is power , nothing that surprises me but it’s disheartening nonetheless

[DGG1931]

My doctor at MDANDERSON said I had a 5-10% chance of dying if I got COVID-19. And I have no other health problems besides CLL. Started Acalabrutnib in February and responding well to that with no side effects.

[Newchallnge]

Thank you. Does anyone know whether there is a risk level difference between those on watch and wait, on treatment or post treatment? I assume the more the CLL has progressed the higher the risk?

[AussieNeil Partner Administrator in reply to Newchallnge]

I would agree with your assumption, but our degree of immune compromise is as individual as our CLL. I would expect that those of us with more severe hypogammaglobulinemia (low IgA, IgG and IgM immunoglobulins) would be at greater risk, as we rely on our lymphocytes to protect us from viral infections. How well we function with low immunoglobulin counts and to what extent CLL suppresses our T lymphocytes are also important factors. (CLL drives T lymphocytes into exhaustion).

During and post treatment, our risk would be expected to be initially higher, then gradually improve as and to the extent that our immune system recovers. That again would be different for each of us, depending on our treatment type and how our CLL has affected our healthy lymphocyte production and function.

Neil

[Sam-1]

This is really disturbing, the patients like us with cll or lymphoma are at higher risk from corona virus, my point , we at this.com , we are belong to B cell lymphoma, chronic cases , not other kinds of leukemia or cancer , most of us not on chemotherapy, also we receive igG immunoglobulin iv or subQ plus the BTK inhibitors like calquence, the later is protective against cytokine storm which we hear it is the major source of serious damage to the lungs and heart etc. any one of the group have comments will be very helpful.