CLL Medications and Corona Virus

[wizzard166]

I read a fascinating transcript of a moderated meeting between a Patient Power host and three very talented CLL Specialists. It had to do with the latest CLL Medications being considered at possible treatments for non CLL Corona Virus victims.

In essence they were saying that the medical community is interested in the CLL medications possibly having a positive effect with the more seriously ill Corona Virus cases. Now get this - the reason is because of the effect these drugs have on lowering the body's immune response to infection. They are talking about the CYTOKINE STORM in Covid 19 patients due to their super strong immune system acting up and attacking the body's own lung tissue cells. The CLL Novel Targeted Theraputic drugs like Imbruvica have the reverse effect of restricting this Cytokine Storm; thus, lowering our immune response.

Doctors begun to wonder why some young and otherwise healthy people are dying from the shut down of the Respiratory system, and they have hypothesized that it could be that their immune response is too strong. This led to some doctors wondering if medications that suppressed the immune system might actually save alot of these patients.

I'm not by any means suggesting that us CLL patients, especially those on the Novel Targeted medications, might be safe going around without Social Distancing, but I thought this might be a fascinating thing to read. This is the link to the article for any of you interested: patientpower.info/chronic-l...

When I read other articles written by doctors about this concept of strong immune systems being a possible cause of bad COVID-19 lung problems, I actually began to wonder if my low immune system might protect me. I guess that is absurd, but then again read this article and see what you think.

Carl

[Hidden]

healthunlocked.com/cllsuppo...

[cajunjeff]

We have been discussing this on here. The theory makes sense, that is, that some of the most damage covid does in its later stages is as a result of an overactive immune system releasing a cytokine storm that causes a severe inflammatory reaction in the lungs. Ibrutinib and Calquence are drugs known to inhibit this reaction. So it’s a bit ironic our suppressed immune systems might even help us.

Right now it’s mostly a theory that has to be proved in clinical trials. It has promise. It doesn’t sound like Ibrutinib would keep us from getting covid and suffering symptoms, but it might make covid more manageable and keep us off a ventilator. It is mostly people who are having these severe immune reactions that have their lungs fill with fluid and need mechanical assistance to breathe.

I’ll take any bit of hope or good news there is out there and this sounds like a reasonable theory.

[wizzard166 in reply to cajunjeff]

I like your thinking Jeff. I had read that an overreactive immune system might be causing the most severe reactions to the COVID-19 before this panel group discussion on Patient Power. It immediately made sense to me, and I began to fantasize that maybe I could actually suffer a COVID-19 illness and survive.

When we think about who is hit the hardest and the least. Here is a FACT - THE LOWEST INCIDENCE OF DEATHS FROM COVID-19 IS CHILDREN. CHILDREN HAVE LOWER IMMUNE SYSTEMS THAN ADULTS; IN FACT, WEAK IMMUNE SYSTEMS. Hmm, now what might that tell us?

I'm not suggesting that CLL patients can now go outdoors without worry, but I'd be fascinated to know the % of total patients who have died with COVID-19 and the % of CLL patients who tested positive and died with COVID-19. Either that or some other statistical study that measured the effect of COVID-19 on CLL patients. I've wondered alot in fact if I was exposed and had an attack and beat it in three days. I havent been tested, and when testing for the antibodies is available easily I really want to take one. If in fact I have anitbodies to COVID-19, it would certainly enhance my thinking that weak immune systems actually help chances at survival with this bug.

Anyway I guess I have too much time on my hands, so my overactive mind is just enjoying itself.

Carl

[AussieNeil Partner Administrator in reply to wizzard166]

Hi Carl,

Children's immune systems are not lower than adults, it's a bit more nuanced than a high/low comparison and their immunity is better described as being immature. They haven't yet developed the humoral immune defenses that an adult has (i.e. a range of antibodies to previous infections), but they actually have higher counts of the different white blood cell types which reduce over time. See the table entries for white cell counts and the individual white cell counts here: healthcare.uiowa.edu/path_h...

Per Why do some people with coronavirus get symptoms while others don’t?

theconversation.com/why-do-...

Children have immature immune systems, but one hypothesis to explain why they don’t seem to get as sick with COVID-19 is that their innate immune response to coronavirus is greater than in adults.

This may lead to a reduced viral load – the quantity of virus particles that survive in the body – because they’re able to clear the virus more quickly.

Immunity wanes with age as reflected in the amount of bone marrow allocated to producing white blood cells, lymphatic tissue in the throat reduces (which is why swollen tonsils are more of a problem in children than adults) and the thymus gland, where T cells are educated, also shrinks as we get older.

Neil

[wizzard166 in reply to AussieNeil]

A bit beyond my total knowledge base to fully respond, but it seems to me to be a complex thing. For one thing it is obvious that having lived far fewer years a young child would have far less antibodies to various different bacteria and viruses than a young adult. For another thing it is true that the Bone Marrow has a greater cellularity in a very young child than in a mature adult. The level is 100% at birth and decreases with age; such that, a 70 year old would have 70% fat and 30% cellularity; thus a number of 30 compared to the 100 at birth. When I internet searched who has a greater immune system, children or adults, I came up with adults which is why I had that hypothesis. So I'm not sure what the truth is; however, isnt it true that the greatest deaths and dangers with regular Flu is little children and older people?

[AussieNeil Partner Administrator in reply to wizzard166]

And there we have the quandary. We don't have immunity to new flu virus strains, yet we have the difference in fatality rates with age between the flu and SARS-CoV-2.

Neil

[lexie]

CLL low immunity as a super power, tempting but I've got no interest in testing that theory.

[newyork8 in reply to lexie]

Indeed...more importantly we wouldn't do well with the pneumonia with low immunity!

[wizzard166 in reply to newyork8]

Hey New York I hope you are alright. I know how hard NY was hit, and I actually waited until the last week approaching March 31 to cancel a trip with my wife there. I only grudgingly gave it up, because I love visiting New York, but I had to face the reality of the situation.

I have had Pneumonia five times lifetime, and my last was in 2016. I actually had it three times between 2014 and 2016, and the last incident in 2016 led to me seeking out a hematologist after discharge. She has followed me since then, and finally gave the diagnosis of CLL in April 2018. So of all people I've worried alot about COVID-19, and have been staying indoors for the last six weeks. My trip to the City was to be a three night add on to a visit to my CLL Specialist in Boston on March 31. I gave up on the New York segment first, held on stubbornly to the Boston part, and finally gave in and cancelled Boston too within four days of the trip. My Immune system has below normal readings, even though I'm still early in the game of Watch & Wait. So even though a lower immune system but likely not one that is below normal is probably good for beating COVID-19, I wouldnt want to try exposing myself to it with a bad immune system.

[Big_Dee]

Hello wizzard166

This is one trial I will not do. Thanks anyway.

[wizzard166 in reply to Big_Dee]

Good idea Big Dee. I'm not planning to run out and test it either; however, it does lift my spirits a bit to learn that lower immune system response is actually better than too strong an immune system response to this potentially deadly Corona Virus. That doesnt mean that better off will mean the virus won't hurt you.

[bennevisplace]

I'll have an Imbruvica & Coke please!

BTK inhibitor seems to have worked in one study of mice dosed with the H1N1 virus. It may be many months before we see how well it works in humans with the SARS-CoV2 virus. Astrazeneca are the first off the blocks and have only just started recruiting for their Calavi trial. Meanwhile Covid patients have been receiving the drug off-label, anecdotally with some success.

Regardless whether you're on Ibrutinib, Alacabrutinib, another drug or no drug, CLL means you're extra susceptible to Covid and if you get it the infection will almost certainly be severe i.e. with virus in the lungs.

[wizzard166 in reply to bennevisplace]

Yes I read about the Imbruvica and Coke. They were speaking about those who cannot swallow anything at the current time, and how to get the imbruvica into them. They have tried grinding the Imbruvica pill and mixing it with Coca Cola, because the high acid level in Coca Cola (you know how teeth disolve in regular Coca Cola if left overnight) helps to totally disolve the pill.

[bennevisplace]

Leaving my teeth in Coke overnight?? I'll take your word for it. I believe it will dissolve a nail in a few hours.

When my son was little he was way too fond of the stuff and knowing he was squeamish about dirt I told him that Coke is made from ditch water (a colour match). He never touched Coke after that, and many years later when the truth emerged he forgave me the white lie.

[wizzard166 in reply to bennevisplace]

keeping kids away from all sugar soda brands are a wise idea. Sugar is a poison. I learned years ago when trying the Atkins Diet that it is Carbs (of course sugar is the worst carb) that cause fat deposits and clogged arteries and not fats. Yes it is the fat that is deposited, but it is the carbs that cause the deposit. If you leave out carbs the body will use for energy or eliminate out of the body the fats. Carbs cause insulin to be released. Insulin's main function is to get sugar out of the bloodstream (because sugar is a poison). Insulin has a second but little known function; Insulin is the substance that causes fats in the blood stream to be deposited everywhere in the body (including arteries). When I did the Atkins legit at age 60 I at tons of fatty everything, and proteins, but only 28 grams of carbs per day. In two months I lost fifty pounds, and my Triglyceride's went down from 200 to 59. So much for fats causing arterioschlerosis, it is carbs.

[Packers46]

Interesting theory, but like others I'm not going to be a test subject for it. I'm going to keep staying in and try to keep from getting it as best as I can.

[81ue]

Long ago there was a clinical trial, but I can't figure out what the result was of treating CLL with hydroxychloroquine aka Paquinil

clinicaltrials.gov/ct2/show...

[AussieNeil Partner Administrator in reply to 81ue]

Good find. It was only a small trial with 22 participants completed 10 years ago. It only stabilised CLL in those with mutated IgHV

ashpublications.org/blood/a...