How to decipher a letter from the haematologist?

[dirtbiker]

How to decipher a letter from the haematologist?

I have had a series of recent blood tests and was unable to speak to the haematologist due to Covid. I have spoken to my GP but I am afraid I am still confused.

My results show...

"haemaglobin 142 g/l, lymphocytes 7.3 x10.9/l, neutrophils 2.7 and platelets 192"

The further, recent blood test (6 weeks later) shows an increase in lymphocytes to a figure of 11.2

The letter says " Cell markers are suggestive of monochlonal B Lymphocytosis with CLL phenotype"

The GP tells me I am fine and the condition is benign requiring 12 monthly check ups. I am not sure if I have CLL?

Dr Google seems to have confused me.. can anyone help explain please?

Thanks..

[AussieNeil Partner Administrator]

From ncbi.nlm.nih.gov/pmc/articl....

"Monoclonal B lymphocytosis (MBL) is defined as the presence of a clonal B-cell population in the peripheral blood with fewer than 5 × 10^9/L B-cells and no other signs of a lymphoproliferative disorder. The majority of cases of MBL have the immunophenotype of chronic lymphocytic leukemia (CLL)."

From that, I would infer that your monoclonal B-lymphocytes account for less than 5 of your total lymphocyte count of 11.2. Further, per that paper, you most likely have high-count MBL, "which progresses to CLL requiring therapy at a rate of 1% to 2% per year". Hence the annual check-ups.

I hope that you can soon confirm that with your haematologist. Note that per that paper, you still have a degree of immune compromise, so take care to minimise your risk of infection and do get all your non-live vaccinations up to date as soon as you can.

healthunlocked.com/cllsuppo...

Neil

[WalkTheLine in reply to AussieNeil]

Hi Neil

I really hope dirtbiker found your reply helpful but some of us need a more simplistic set of definitions and interpretations. Many of the posts on this site are helpful in a way and certainly well intentioned but often we are faced with a whole series of acronyms and figures which, unless you are familiar with the context, are meaningless. What is needed is a web page We can go to listing and explaining all the terms in basic English, and the normal levels for the parameters and what it means to be above or below.

Kind regards, Martin

[AussieNeil Partner Administrator in reply to WalkTheLine]

Perhaps these posts from our Pinned Post section healthunlocked.com/cllsuppo... can help?

Lab Test information and reference 'normal' ranges:

healthunlocked.com/cllsuppo...

Common CLL related acronyms and definitions: healthunlocked.com/cllsuppo...

The CLL Society website has a very good glossary.

Thanks for raising this matter. I hope anyone feels that they can ask for further clarification if an answer is too technical. The difference between MBL (low and high count), SLL and CLL is unfortunately rather technical.

Neil

[WalkTheLine in reply to AussieNeil]

Thank you

[dirtbiker in reply to WalkTheLine]

Martin, thanks for your insightful comments which do indeed reflect my frustrations at being unable to comprehend the information I am being presented with. I have read quite a lot now and I think my situation is as follows...

My blood has stuff in it that helps fight infections.. this stuff has gone wrong and some cells are not being replaced properly hence the increase in lymphocytes. This increase,. in itself, is not an issue but it is evidence that my resistance to infections will reduce at a rate of about 2% per year. So I have what is called MBL now and this will eventually lead to CLL. CLL is a type of cancer. If the CLL does not kill me then a reduced resistance to infections will... but it may take a long time..

Is this anywhere near accurate?

Thanks

[WalkTheLine in reply to dirtbiker]

Love it, just at the right level everyone can understand. 😆

[Cottondove in reply to WalkTheLine]

I so agree...I too am confused!

[dirtbiker in reply to AussieNeil]

Many thanks Aussie Neil.. My apologies for my simplistic approach to what is undoubtedly a complex issue but may I ask for a bit more clarification please?

Is it safe to conclude, therefore, that I do not (yet) have CLL but it is a likely outcome?

The "odds" of progressing to CLL are up to 2% per year... so a maximum of 2 people in a hundred are affected? In other words after 50 years everyone gets it ... ?

What amount of lymphocytes in my blood means things are getting out of hand? I appreciate this will vary but google tells me 4.5 is normal and I now have 11.2 (up from 7.3 over a 6 week period) Is the rate of increase important or is it the actual number?

For example - if it gets to 20 do I start to worry?

Also what does "phenotype" mean in this context...?

I do not appear to have any symptoms with the exception of occasional bouts of extreme tiredness/lethargy.

Thanks again for taking the time to respond...much appreciated.

[AussieNeil Partner Administrator in reply to dirtbiker]

A phenotype in this sitiation, is a set of observable characteristics that are used to distinguish between possible blood cancers. CLL is just one of a number of Non-Hodgkins Lymphomas where there's a excess of clonal (i.e.) duplicated and in this case cancerous B-lymphocytes. These cells are only slightly larger than red blood cells and in the blood, they don't stick to anything else and are dormant. They are also outnumbered by red blood cells by around 1,000 to 1. So they can get really, really high without much of a concern with this leukaemia/lymphoma. It's when the CLL cells infiltrate the bone marrow (disrupting blood cell manufacture) and cause nodes and the spleen to swell (cancerous behaviour), that they begin to impact on our health. The highest lymphocyte count I've heard of with CLL was 1,400. We have some community members still in watch and wait with counts over 400.

CLL specialists hence aren't concerned with high lymphocyte counts, but how fast they are growing. They start to look for confirming evidence that treatment is needed when the count doubles in under 6 months and the starting count was over 30.

You are pretty well right in your understanding of the rate at which high count MBL changes to CLL.

Don't worry about the steep learning cure. The biology of CLL is very complicated. Just keep in mind that when you ask a question, you do have to already know a fair bit of the answer to understand more.

Neil

[Newdawn Administrator]

Hi dirtbiker,

This is like a foreign language when we are first diagnosed and we all started somewhere. I thought a lymphocyte was a Star Trek species when I was first diagnosed!

You’ve got an understanding of the basic principles there and I’m adding an old but still very relevant on MBL by Dr. Sharman in the hope it helps you further to understand this.

cll-nhl.com/2013/07/monoclo...

It’s sometimes said that most people with CLL will have started off with MBL but not everyone with monoclonal B cell lymphocytosis will go on to develop CLL. Lymphocytosis is too many lymphocytes and it can happen normally when we have an infection. That’s a very normal response. When there isn’t an infection to explain the rise over time and it doesn’t drop, the doctors start to look for other reasons. In your case they’ve found MBL but cannot tell you with certainty whether it will develop into full blown CLL. Incidentally your other blood results are fine.

In a sense you’re on Watch & Wait before the real Watch & Wait actually begins and I know that’s very hard. Perhaps harder than being told you definitely have CLL and wait it out to see what kind you have and how fast it will progress. The fact that it’s not galloping just now is a really good indicator. I’m pretty sure I had MBL for years before my actual CLL diagnosis because I have the blood results going back years.

With CLL, it’s kind of like having an army that keeps increasing in size but the new recruits are all unwilling conscripts who can’t fight properly but still keep joining! So we gather lots of these useless non fighting soldiers who are really the malignant B cells and they attract more malingerers. The treatments we have are to flush them all out and let the Army (our bodies) start again building fighting soldiers (healthy lymphocytes). That’s where I am now as my useless B cells have been chased out by Ibrutinib and killed off by Venetoclax. I’m now waiting for my bone marrow to start it’s healthy recruitment plan again with elite soldiers! 😉

With MBL, that process may have started but the flawed recruitment process isn’t totally established and there’s still a healthy army of cells holding their own. Nobody can say whether that will continue but in truth, it sounds like your tests have established the tell tale signs of CLL ‘brewing’. The tests have shown cells that are looking too much alike (monoclonal) just like that band of useless ‘soldiers’. I understand the frustration too that the process cannot be halted at this stage.

You’ll be monitored from now on and you could be one of the lucky ones that have a very indolent course. We’ve had people in this position where it meanders on for many years so try to avoid labelling yourself or waiting for ‘the shoe to drop’. You’ve got a few dodgy cells but you’re not unwell and life is for living!

I know that’s a bit simplistic but hope it helped a bit.

Best wishes,

Newdawn

[WalkTheLine in reply to Newdawn]

A nice summary Newdawn, well explained. Thank you

[dirtbiker in reply to Newdawn]

brilliant...

...thank you so much for taking the time to help me understand. I think the combination of different explanations has helped the penny drop for me and it now feels like I have a basic understanding of what is going on! I "feel" a bit more "in control"... even if I am not!! LOL...

I have a motorcycle that needs riding today..

[Lookintomyeyes in reply to Newdawn]

I would like to thank you too,found it very helpful.Many thanks.