CV-19 Any stats!

[Estate1]

Curious if there’s any information about numbers of CLL’rs infected with Covid 19 ?

[JigFettler Volunteer]

This an interesting question.

Strictly, than answer should be zero.

I know its not. We have had Covid infected CLL patients in our local hospital. (1 was 85yrs, recovered)

There are other questions too.

Of those with CLL who get infected, how do they get on?

What is the incidence of a cytokine storm in CLL Covid patients? Is this less than in non immune compromised patients? Its important - as its what kills and what much of the treatment development is aimed at.

No forgetting that some of the trial treatments are also use in the treatment of CLL (!)

However, I guess there is a low probability of getting useful data. The numbers likely to be low, countries count in different ways, and the whole issue of other underlying conditions will fog the stats. A patient with CLL, and diabetes for example - will be different to one without diabetes, but has say a heart condition, etc.

Theoretically - we must be more likely to get Covid and likely to do less well then those with out CLL. Perhaps less inflammatory reaction - maybe more sepsis.

Its complex.

I have looked for data - but as yet found nothing useful.

Focusing my efforts in not getting it.

I await other contributions with interest.

Jig

[Estate1 in reply to JigFettler]

Thank you Jig...best to protect oneself from contracting the virus period ...that is the job at hand. Best practices etc

[AdrianUK in reply to JigFettler]

If you read the medical literature and search the news articles as well as the forums there is definitely evidence of some CLLers even in watch and wait sadly dying from COVID19. Others who get sick and even needed a ventilator but recovered. And others who had relatively mild disease tho a lot of those dont have a confirmed result they are just "Sure" they had it. I even suspect that when antibodies are tested it will turn out a few of us might even have had it assymptomatically. Just no way of knowing which group any individual will be in. But if you look at one of my old posts there is a growing evidence based that whatever is happening regarding shielding there are still too many blood cancer patients in general ending up on itu and dying compared to the numbers in the population. Blood Cancer UK did a review of that data which I then commented on. Shielding would have REDUCED those risks so the fact they still put blood cancer as the highest risk group up there with organ transplants says everything we need to know sadly. Hang in there everyone.

[JigFettler Volunteer in reply to AdrianUK]

Of course CLLers will be exposed to all the non-CLL vulnerabilities data tells us about, in addition to CLL imparted risks.

It stands to reason we are more likely to get Covid.

As for protection against the Cytokine storm, what does so much damage, I've not see reliable data as to whether we are protected. Theoretically postulated our immune systems not up to producing one. Notwithstanding that CLL is itself a heterogeneous condition.

Jig

[Shedman]

There is a data analysis from a group at Oxford, looking at NHS data of COVID19 mortality.. possibly only England NHS [the health service is not a uniform thing across nations of UK, nor are databases properly inter-connected]

The data analysis is specifically attempting to disentangle the data: distinguish between factors [I forget the correct mathematical term for this.. ‘independent factor analysis’ ?]

Eg. Look at relative risk of age versus diabetes versus haematological malignancies..

— and in that last category, one immediately realises why this is not exactly going to help us CLLers.. haematological malignancies is too broad: acute myeloma seems almost certainly a worse comorbidity factor..

I should ask One of the authors whether he can or has got a more detailed view on CLL specifically.. — in fact, it’s already been asked.. finer detail is likely as moe data emerges..

So we’d best look at the generality of this pre-peer review paper with caution and a broad sense of it’s possible truths..

The data analysis so far puts haematological malignancies on a scale of significance.. the highest end of that scale assesses them as highly significant factors versus CoVID19 (as compared to other factors)

[Jonquiljo in reply to Shedman]

Most of us with CLL are "sheltering" or "being shielded." It's likely hard to get data if we are all staying out of harms way. That's probably a good thing.

[Shedman in reply to Jonquiljo]

Good thing? Too right!

However, today was my consult day, so telephone consult it was.. and it was the turn of senior consultant. I’m a soft touch; no matter how tough (kid gloves mostly, but..) she has been with me from time to time, I very much warm to her

..interesting chat. She affirmed that UK (England?) CLLers are intended to be shielding at home through end June, but that she was very much for life proceeding.. that living a full life matters..

Her further points were, paraphrased:

- proviso: that she did not have a chronic illness [1st rate awareness.]

- that this was based on risk assessment..

- that risk assessment could only really come from a testing, tracing, isolating public health regime..

eg. If your region has only very few infections arising, that can indicate a low level of risk..

- she was not keen on my thoughts about full face masks, not in the long term..

- nor was she keen on the idea that people should isolate until a vaccine became available.. too unpredictable.

And I learned the most important thing: my lymphocytes are really low / predictably slow to rise after treatment

A thought occurred to me today: really effective (self-protective) face masks need to fit the face really well. This also makes them more comfortable.

At some point during lockdown I read about a clever husband making his care worker wife a custom, perfect fitting, face mask..

..if I explore / pursue some new areas of knowhow, I should include how to make custom face masks; if this pandemic teaches anything, it is that a well fitting face mask is a valuable item..

Stay safe.

[AdrianUK in reply to Shedman]

It is odd how everyone seems to be assuming a vaccine has to be months or years away. They are making tens of millions of doses of the Oxford vaccine right now and might be able to distribute them as soon as September depending on the results. Ironically we need the disease to keep spreading fast to prove the vaccine works. For me there aint no way I am moving into society till we have some more data about the vaccine. To stay put for a few more months seems a small cost to pay to guarantee making it out of 2020 alive.

[Justasheet1 in reply to AdrianUK]

Adrian,

Thanks for the positivity of your post.

Jeff

[Shedman in reply to AdrianUK]

I defer to the experts..

6 months appears to be a highly optimistic timeframe.

There is nil guarantee that a vaccine will successfully emerge.

I am not a negative person. I am not interested in false (unrealistic) optimism.. my life is happening, each and every day — I need to base my plans in a realistic framework; it will not be a problem if things turn out to be better — that won’t leave me unprepared nor disappointed.

—

Chat with consultant started looking very unrealistic - though she observed, very fairly, that she does not have a chronic disease..

..but in short order it was clear we were on the same page:

Life involves risk - decisions can/must be made relative to the risks..

In other words, the CLL community benefits greatly from a high quality test/track/trace system run by public health, as it enables us to assess the risk, eg. from CoVID19, in our local area.

UK looks likely to have effective test/track/trace in place sometime in September..

So? I will continue living cautiously through September, or, whenever the system is up, running and the data from it seems reliable.

—-

In spite of your vaccine optimism, perhaps because of it, you state that you won’t be exiting shielding “until we have some more data about the vaccine”

*not a competition, yet..*

..this makes me feel more optimistic about living life than you are..

- I don’t need see a vaccine (which might not happen)

- just need enough infection data to assess my risks of moving in situations outside of my home.

Currently I go out and about, but avoid people, avoid public transport, avoid pavements and populous places on still days when breath lingers..

To each their own approach.

[AdrianUK in reply to Shedman]

Ironically of course you and I are actually doing the same thing for slightly different reasons: waiting till September and assessing the situation.

I do appreciate the vaccine is not a guarantee but for reasons I will share in here over the coming days I believe actually that the oxford vaccine probably has the best chance of working and that if it doesn’t maybe -no- vaccine will work. And if that becomes the case clearly we all have to assess what to do about that since I for one am not going to be able to live apart from my family for ever!

So we wait to see if there is a second spike and if the vaccine does look like it will work.

The challenge with the vaccine study is actually that we have no guaranteed time frame on when results will become clear. It will depend on how effective it actually is and on what the rate of transmission is in the broader population.

In a breed of primates that can catch COVID-19 none of them caught the disease after being given the vaccine even when their cages were flooded with it.

If 0% of vaccinated humans caught the disease clearly we wouldn’t need that many of the control group to get sick to conclude that it was working.

Since those with immune compromise were not included in the study that extremely positive outcome does lie within the bounds of possibility.

But it seems much more likely that the vaccine would only work in some people. Suppose it worked in 70% then clearly we’d need to wait a bit longer since we’d be looking at detecting a difference in infection rates between the groups rather than none at all in the treatment group.

If there can be no vaccine than for sure the issue around our safety to come out of hibernation becomes down to the rate of infection locally for us.

So for example in the uk at the worst it was estimated that 1/40 people =0.025 as a decimal or 2.5% were carrying the virus at that point. Given our risk of dying if we caught the disease might be as high as 40% (this is probably too high but is based on the ASH data) it is understandable at that point we were told not to even leave our house. The chance that we might encounter someone who didn’t socially distance from us was too high.

I read somewhere that even at six feet their might be around a 1% (0.01 as decimal) risk of transmitting the virus (will try and find that again). Clearly at 12 feet that will be even lower and at the 100feet I aim for now on my social distanced walks the risk has to be effectively zero.

But let’s do some basic maths understanding these are very rough estimates being used for demonstration purposes Only. Please feel free to point out any errors in my thinking below and also understand that ALL these estimates are most likely completely wrong.

What I want to take away from this exercise is simply how the prevalence of disease in the population actually affects our risk more than our actual risk of dying if infected.

Put simply- if we never catch the disease we can’t ever get severely unwell from it. Obvious point I know but for me at least this exercise was helpful in thinking about whether I feel safe going walking in a deserted area at the moment.

The theoretical risk then of catching the disease from a single socially distanced encounter outside at the peak = risk of population member having the disease x risk of transmission from every six feet encounter = 0.025 *0.01 = 0.00025. Which equates to a transmission risk of each socially distanced encounter of 1/4000.

If you then factor in the death rate (if we believe it) then anyone you passed in a park at around six feet might have equated at that time to a risk of death of 0.4*0.00025= 0.0001 or 1 in 10,000.

Remember that’s the estimated risk of death of each socially distanced encounter outside. Clearly if you we’re walking in a crowded park and had 100 of such encounters (still at six feet) then the risk of transmission in that crowded park at that time would have in theory been 100*0.00025 = 0.025 or 2.5% and that would equate to a 1% risk of death which surely must be way too high an estimate you’d think even for 100 six feet apart encounters.

Given that clearly the risk is much higher for a non social distanced encounter, I have seen estimates of 50 x higher if you breach the six feet rule. But lets say instead it’s 10x. Well in that example in theory getting on a tube train with 100 other people would a much higher chance you’d catch the disease (i.e. 2.5*10= 25% ) and therefore arguably be left with the estimated personal risk of death from that train trip of 40%. *25% = 10%. Though to be clear that 40% is too high because it doesn’t take account that some people might get mild disease and not therefor be tested or identified.

But what does level of background population do for this very rough estimate?

Right now apparently the estimate is between 1/250 and 1/500 of the population being infected. Let’s see that that does to our risk if we take the lower estimate of 1/500 or 0.002 or 0.2%.

Each socially distant outside encounter then has a risk of infection of 0.002 * 0.01 = 0.00002 which is 1 in 50,000. That’s a huge difference from the earlier estimate. At that population rate you’d have to have a LOT of socially distanced encounters to make the chance of catching the disease be high.

On the modelled underground train the risk would remain higher however. Here we’d multiply that 0.00002 number by 10 as it’s not socially distanced and by 100 for the number of people we are assumed to be encountering. This would give a 1/50 chance on transmission for a Journey on the said train. And a theoretical risk of death directly from taking that journey of 0.008 or just under 1%.

As I say I’m sure all these estimates are wrong. So don’t build too much into them. I do hope that the more sophisticated models of this point that we all hope lay behind the most recent slight relaxing of shielding guidelines will be released.

But the following key points do emerge

1. The risk of a socially distanced encounter even outside is not zero even if you are at 6 feet though this must surely drop off as that distance occurs.

2. The chance of infection is hugely dependent on the rate of infection in the population.

3. Limiting the number of people you come into contact with even outside remains sensible. But clearly as the risks in the general population go down the risk of each individual encounter also goes down. Things like seeing a family member in your garden become reasonable things to consider.

4. Even at relatively low levels of infection in the population getting into a crowded non socially distanced space is likely to remain high risk for transmission for some time to come. Public transport looks to me like being out of bounds for us for quite some time.

[Jm954 Administrator in reply to AdrianUK]

References Adrian?

[AdrianUK in reply to Jm954]

The calculations are illustrative. I can’t seem to find the article I read about a 1% risk of transmission at six feet. And even if I could it might well be wrong. Please understand that all I’m trying to do here is demonstrate how hugely the risk will vary depending on how much you are exposed. Some of these numbers are found in the article I wrote on higher risk which is referenced.

The 40% death rate is for symptomatic covid 19 blood cancer patients reported to The ASH database linked on my high risk article. It is almost certainly too high as I think they people running that would agree. (Doctors will only get to hear about bad cases and are more likely to remember to report bad cases....)

The incidence of sickness being 1 /250 to 500 now and 1/40 at its peak in the uk was said verbally at one of the Uk press conferences I believe and it was also in the telegraph article that announced we could shield referenced in this post. It is of course an estimate also.

the one when they announced we could walk out. Would be nice to see their official calculations of what they think the risk is.

healthunlocked.com/cllsuppo...

[Jonquiljo in reply to AdrianUK]

I can confirm reading that transmission at 6 ft is about 1%. I guess that would assume a mask and depend on what the person (near to you) was doing. New studies are “finally” indicating that masks are a great help in not spreading the disease.

If someone was talking and coughing at you, I would guess the risk is higher. If the person was silent, then the rate would likely be lower. Silence is always better most of the time.

I do disagree with the 40% death rate number. I think reality is way way below that number. I recently had a consult with my CLL Dr - and (I don’t want to quote a private conversation with a physician), but he generally indicated that many CLL patients were doing better with COVID than expected.

Please also remember that the average age of people on this forum is likely lower than the average age of people when first diagnosed with CLL - 71 years old. Other co-morbidities likely have a big part in ability to recover from COVID too, and co-morbidities tend to accumulate with age.

I’ll leave it at that, since CLL patients are all different in terms of severity of their disease. I am early stage W&W - so my Dr just said don’t go out and do risky things - which I am not. He did not seem worried about me at all. And I am 67.

But, just from looking at the ASH numbers - it is clear that they are heavily skewed to what are likely patients with more advanced CLL - if even that. The numbers in the sample are so small that to draw any conclusions is almost impossible. As I said above, we’d know more if we all weren’t in hiding - but it is better to be safe than sorry.

I agree that it is best to wait for a vaccine. That wait may be long or not. The problem with vaccines is that they are given to so many people without the illness - that you need to make sure the vaccine is absolutely safe to a point. But the Oxford vaccine is one of, if not the top candidate.

[Jonquiljo in reply to Jonquiljo]

I need to clarify: The chances of having an infectious dose from a virus spewing person at 6 ft may be 1%, but the chances of anyone who is 6ft from you having the virus is much lower than that.

The 1% has been measured. The chances of being 6 ft from someone who can infect you is unknown, but small. It depends on where you are and what you are doing, I suppose.

I really wish that all our governments will get N95 production going so that not only will it be enough for hospital PPE, but for the population at large as well. It is 2020, and lots of the masks I see on the street are not going to offer much protection at all. N95's should be standard in all households.

[Mldeterm in reply to AdrianUK]

This is all so hypothetical and your math is off from the very beginning.

"The theoretical risk then of catching the disease from a single socially distanced encounter outside = risk of population member having the disease x risk of transmission from every six feet encounter = 0.025 *0.01 = 0.0025. Which equates to a transmission risk of each socially distanced encounter of 1/400."

.025 x .01 = .00025 which is 1/4000.

[AdrianUK in reply to Mldeterm]

Thanks... our own form of peer review! Have adapted the maths and the comments to reflect. I should have realised that there couldn't have been such a high risk of catching a single train even in the worst time. I think that the one thing this shows is kinda obvious really but that the less the population around us has COVID19 the lower our risk. I really hope that at some point a much better model of this is shared by the SAGE group and then we can really start to think at what point do we feel more safe to do some of the things we are not doing now.

[JigFettler Volunteer in reply to AdrianUK]

I fail to understand how such numbers help me as an individual. Catching Covid is binary. You get it or you dont. You cant get it a little bit.

The chance of infection is very low. If infected - the chance of a significant illness is high.

Outdoors is much safer than in doors where an aerosol suspension may hover for hours. Its the reasons I refused to get my bloods done during FCR with such low L and N levels.

I know our local Nightingale Ward is limbering up - as of today June 8. In some contradiction to the local lockdown plans.

Hey ho!

Stay safe stay lucky!

Jig

[JigFettler Volunteer in reply to Jonquiljo]

A very good point well made.

Jig