Hello everyone, I don’t post often, I was reading and from why I read CLL patients in W&W or non treated had a 40% fatality rate with covid-19. This has something to do with people being treated actually we’re better off as the medication worked as anti-inflammatories.
Any input?
Thanks
Chris
Data I’ve seen about CLL and Covid indicates that the high mortality rate (33%) is of those that are hospitalized. In other words, there are no data regarding the potentially much larger group of CLL patients that get Covid 19 but are never hospitalized. This inherently biases this number since the real denominator of all CLL patients that contract Covid is unknown.
I’ve also seen it stated (Dr. Anthony Mato) that the risk for mortality of hospitalized CLL patients may be similar or “slightly higher” than non-CLL hospitalized Covid patients.
If you go to cllsociety.org (Dr. Brian Koffman) you will see he has a good summary and links to recent papers regarding recent retrospective studies supporting those numbers.
Also not a great difference for those hospitalized CLL patients on BTKi treatment.
*Edited to correct CLL society URL
The following was posted by AussieNeil on that subject.
healthunlocked.com/cllsuppo...
I wouldn't suggest trying to get treatment without CLL Dr. pointing to reasons of need treatment, however.
With your CLL being as indolent as it is, and your not having any B symptoms, (you report blood levels are good and no enlarged nodes and feeling well.) you have the possibility of a long-term---many years of living well without treatment.
I have been 20 years without treatment (first diagnosed at 60) and am only now having some issues pointing to my need for treatment---spleen is crowding my stomach and I am having some pain in that area. As a 13q14.3 delete and mutated patient, I have been one of the 30% who have had an indolent CLL.
I saw both of my oncologists during the virus lockdown, and they gave different answers to this very question. My Ormond Beach FL doc said I'm not immunocompromised and was no more vulnerable to Covid19 than anyone else my age. The doc at Moffitt said I am immunocompromised, and would fare worse with Covid19 than others my age (71). I have no idea which answer is correct, assuming that one of them is.
Very interesting. I can't get an answer either. Has anyone got an answer?
Listen to the Doc at Moffit.
I think it’s worth saying a couple of things. I say this in more detail in my previous posts on the data such as it is.
1. Some people with blood cancer will get mild or even assymptomatic disease and so recover.
2. Some people will get more severe disease, report it to their blood cancer doctors and in this group maybe 30-40% will sadly die.
There is a lot of confusion about precisely which patients do better and which worse. Some data does suggest a higher risk for those in watch and wait BUT what is often missed is that the reason for that might be those people are likely to be more careless about catching the disease and so if they catch it they might have been exposed to a higher dose of virus initially. The so called virus load.
So we can’t be confident that whatever stage of our illness we are at or whatever treatment we are in that we will do well if we catch COVID. Some drugs do suppres our immunity which in the early stages of an infection might make us worse. But in the later stages it is possible the same drugs might help stop the over reaction. But we do not know for sure in an individual patient if the balance of a medication will be helping or not. We need our immune Systems to regulate well. Ours do not. Not least because from very early on we become impaired at making new types of antibodies.
So the short answer is to take as many steps as we possibly can to avoid catching this dissease. And if you are in a high incidence area especially that would mean not going out of your house for any reason except medical appots and perhaps a socially distanced walk or meet up where this happens outside and more than 6 feet apart. At times we in the uk were officially adviced not even to do that! Definitely no shopping and know going inside bars or restaurants. A recent case in Scotland had THIRTEEN people all infected from one evening in a small bar. bbc.co.uk/news/uk-scotland-...
No doubt if they’d been sitting outside each six feet apart that wouldn’t have happened.
So if you absolutely must be indoors with other people then mask, gloves, hand washing, only use paper to dry your hands and use a clean towels to shower, be aware of toilets, keep six feet apart from others but don’t rely on that only indoors. Do also have windows open right next to you to maximise fresh air (maybe also a fan to push the air from the window to you). I’m wondering about face shields too now you can buy them. But if you use them use them in addition to a mask not instead as alone they won’t work.
So the idea is be very wary of catching this thing. Imagine every person you meet has it and every surface you might touch is contaminated.
But if someone is unfortunate enough to catch it do remember that most people will recover even if they have CLL.
We can massively impact
Hi Chris,
Did you see this information on the CLL Society newsletter/website, like I did? The figures gave me (carer, not patient) quite a fright, too: 33% and 37% percent of *hospitalised* patients sadly die. However, to put this into perspective:
- these are the numbers for *hospitalised* patients only.
- the figures for one of the study (the one of patients mostly in Italy and Spain) were based on a survey among oncologists, i.. only those patients who explicitly contacted their oncologists because they had Covid would have been counted. Mild or asymptomatic patients are probably underrepresented.
- the figures are for the early phase of the pandemic, physicians have since gotten better at treating patients.
- and finally, compare the figures above to those for "all comers" from German hospitals: 25 % of hospitalised men died, 29 % of hospitalised women (I'm German, these are the official figures.). So the risk for CLL patients would seem to be elevated, but not hugely elevated.
That said, each and every death is a tragedy. Keep safe and healthy everyone.
Bettina
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