Analogy

[CountryHarbour]

I like analogies but haven't come up with a good one that explains CLL blood results. I understand CLL really well and all the leukemias actually as my research started back when my mom had AML..but it'd be nice if there was an analogy for those that don't know about it

[BigfootT]

I think cajunjeff had a good one in one of his great posts about a nice healthy lawn being crowded out by weeds. If you think of the CLL as crab grass it works pretty well. Looks like grass, but not exactly what you want in your healthy lawn.

Bigfoot

[Newdawn Administrator]

This may be much more simplistic than you’re seeking CountryHarbour but this is an analogy I penned many, many years ago at the start of my CLL ‘journey’ when I found people utterly perplexed about it.

I described CLL like this to a couple of relatives.

‘It’s like living in a house that looks and seems strong and sound but, without obvious detection, the foundations (immune system) is crumbling. Unfortunately each brick that crumbles creates another weakness but there’s no way of stopping the decline until the whole foundations are in danger of collapse. CLL carries no prospect of remedial work. Only complete underpinning will work and even then the foundations can never be assumed to be fully strong and restored.’

Newdawn

[Spark_Plug]

I love analogies as well.

I tried to explain it to my buddies this way, if you're at work or a bunch of you are together trying to help someone move. There's always someone who shows up gets in the way and you find hanging around the coffee and doughnuts but not doing anything useful.

That's what my B cells are doing a lot are showing up not working, not getting out of the way and my healthy blood cells are having trouble getting the work done.

Take it for what it's worth... 🙂

[AussieNeil Partner Administrator]

I like the analogy introduced by Chris Dwyer, Cllcanada who was given the CLL Cure Hero award for his efforts supporting those with CLL. Chris used an army analogy, with the different white blood cells performing various defensive roles. The B and T cells (adaptive immunity) are directing the rest of the white blood cells on how best to fight the enemy. In this analogy, B cells work by specifically identifying the enemy troops and either neutralising them, or directing other white blood cells to fight and subdue them. With CLL, we get an increasing predominance of B cells, which don't function as they should, but just confuse the rest of our protective army, by shouting confusing messages to other white blood cells (cytokine signalling), wearing them out and making them less effective, so it takes longer and is harder to fight off infections. B cells also interfere with the production of supply materials - not only replacement white blood cells (neutrophils) to fight the invading forces, but also platelets (for repair) and haemoglobin (for supplying energy - oxygen).

Neil

[Newdawn Administrator in reply to AussieNeil]

I was trying to find that one Neil. We miss the wisdom of Chris every day.

Newdawn

[BigDee in reply to Newdawn]

hello Newdawn

He was indeed a CLL Cure Hero, never a complaint, just the CLL facts.

[Ironj]

I tell people that having Cll is like having high blood pressure or diabetes. If you need to be treated for it there meds to keep it under control. I say it’s really just a blood disorder I don’t say it’s cancer.

Thanks John

[Newdawn Administrator in reply to Ironj]

I can understand why you feel more comfortable describing CLL in that way John but I don’t agree with the rather benign comparison. Like many, I also have high b/p and diabetes as well as CLL but CLL is a blood cancer and as such it’s a malignancy. As CLL progresses, I’m not sure it would help others to appreciate its potential potency by describing it as a chronic condition that is very easily contained.

However, in the very early stages and with very indolent CLL, I can understand people using that description.

Regards,

Newdawn

[MisfitK in reply to Ironj]

I also used analogies when diagnosed with CLL (and now with MCL, yeah, I just tell folks it's full blown blood cancer especially b/c I'm on forever treatment).

My analogy was always CLL is like HIV/AIDS. People get that folks can be okay while it's HIV, but when it blows up to AIDS, things are really bad. However, just like AIDS, sometimes you can get pushed back to the HIV status with serious treatment and keep going for many years on regular treatments and observation. This analogy also helps them understand the serious immunocompromised nature of the disease (and the possible body rundownness/fatigue of the disease), even at the "HIV" level, which HBP and even diabetes really don't convey.

Funny enough, when I was at urgent care Wednesday (this will be another 1st and another post), the lab tech had never heard of MCL. So, damn, people in medicine don't know my current cancer, so it's time for buy some awareness shirts for the family to wear around here (the guy knows now, but if folks in medicine don't know what it is, then regular folks don't have a prayer of knowing)...

[Skyshark in reply to MisfitK]

When labs state "Lambda without restriction" and the consultants go along with it, it makes me wonder just how many haematologists have any clue about CLL let alone rarer blood cancers.

The 2018 iwCLL guidelines say, "The clonality of these B lymphocytes needs to be confirmed by demonstrating immunoglobulin light chain restriction using flow cytometry." and "Each clone of leukemia cells is restricted to expression of either κ or λ immunoglobulin light chains."

There is no such thing as "Lambda without restriction", it means the two (or more) clones need to be isolated and tested individually. If at Dx the Kappa clone is 8% of the free light chains then 5% del(17p)/TP53mut is just 0.4% of the overall CLL cells. "No worries" but that's the one that should be worried about. (Interchange Lambda and Kappa for "Kappa without restriction".)

ashpublications.org/blood/a...

[LeoPa]

It is an immune system deficiency. Our ability to fight off viruses is reduced because of it. So we have to avoid infections as much as we can. That is about all anybody who does not have it needs to know about the condition. More of an explanation than an analogy though.

[Notmuchenergy]

I say it’s like running a car on rubbish oil. At first all seems ok but gradually the engine will seize up

[Smakwater]

On a side note, my favorite analogy of the forced mental state brought on by a CLL diagnosis was stated by our friend sepsur.

Sepsur likened having CLL to the the sword of Damocles.

whisperingbooks.com/Show_Pa...

JM

[BigDee]

Hello CountryHarbour

I tell people that I have a blood cancer and more specifically cancer of the immune system. As long as they keep developing new chemo treatments, I can live with it.