Understanding cbc

[Jemisavs5]

I am struggling to interpret my CBC. Which is the number that I monitor for doubling time? Is it the lymph# or lymph%. What about the beta 2. My lymph % is 60 and my Lymph # is 11. My neutrophils % are dropping they are 26 is this bad My doctor said he didn't want to see me for 6 months as I am now on w & w for a year now I insisted he see me on 3 months as it makes me feel better Any advice?

[Oleboyredw-uk]

Hi, Absolute Lymphocyte Count, normally shown as Lymph or ALC (varies from place to place) is tracked by doubling time. Some places privide the % number and you have to work back to ALC, hospital I attend doesnt give % just the absolute so I dont have to do the maths.

If you do not do it already I'd get blood results and track them.

Different people have different views on checkup times, I'd feel happier knowing my doctor thinks 6 months is sufficient based in my experience of my doctor but cannot comment on yours as Zi've not met them. You could ask for second opinion if it makes you happier.

Regards, rob

[Cllcanada Top Poster CURE Hero in reply to Oleboyredw-uk]

In your report lymph# is your absolute lymphocyte count or ALC. It can move around and haematologist don't start looking for lymphocyte doubling time until it gets up around 30K, then most patients go on a closer active surveillance, 3-4 months...

~chris

[Jemisavs5 in reply to Cllcanada]

Thank you! At least now I have a better idea which to look at.

[AussieNeil Partner Administrator]

Forget percentages and look at absolutes for all white blood cells. Percentages are helpful to doctors for patients without leukaemia to gain a quick overview of a patient's white cell type balance. When you have a large excess of a specifict white blood cell type (and growing continually as we do with CLL), looking at percentages can easily give you a false idea of the absolute number of other important cells (like your neutrophils). Most likely the only reason your neutrophil % is dropping is that an increasing proportion of the 100% white blood cells is comprised of CLL cells; the absolute number of neutrophils probably hasn't changed. When you are faced with an infection, it's not the percentage that counts, but having required numbers of white blood cells to overcome invading bugs.

By 'beta 2', I presume you mean B2M (Beta-2 microglobulin). This is one of many prognostic blood tests for CLL and is only done occasionally if at all.

healthunlocked.com/cllsuppo...

Neil

[neurodervish]

Hi there,

First, what amazing support from an amazing group of informed people! I am so grateful to you all.

Just want to add that Brian Koffmans's project at CLLSociety.org has a section explaining CBCs, complete with a downloadable Excel spreadsheet where you can type in all your numbers. cllsociety.org/toolbox/keep... There is a spot at the top of each column with a question mark, which you can click on to get info about what each thing means. Awesome!

[AussieNeil Partner Administrator in reply to neurodervish]

CLL Support Association (of which this site is their on-line presence) provides a similar page explaining common blood tests and includes blood result tracking spreadsheets for both Excel and Open/Libre office which are supported by community members:

cllsupport.org.uk/cll-sll/s...

Both the above spreadsheets and the one on the CLL Society website are later versions of one provided by Chaya Venkat on CLL Topics/Updates and both have columns for tracking B2M. The CLL Society one doesn't have as much detail as the spreadsheets provided via CLL Support Association. Open/Libre office is a high quality and free office suite that provides all that most home users need in an office suite which maintains compatibility for older documents with new releases by adhering to the Open Document standard.

Neil

[Jackistired in reply to neurodervish]

I have an Apple computer and am having a problem getting at the CBC downloadable spreadsheet from cllsociety.org/toolbox. Is there an Apple version of this somewhere?

[Jackistired in reply to Jackistired]

xcel spreadsheet for blood counts for Apple computers- cllsupport.org.uk/cll-sll... site has version that works on Apple computers - I could not figure out how to access cllsociety.org version.

Thanks AussieNeil for answering my question before I asked it.

[AussieNeil Partner Administrator in reply to Jackistired]

Yes the Open/Libre office version (.ods extension) works on Apple, Windows and Linux computers.

[Cllcanada Top Poster CURE Hero in reply to AussieNeil]

I just want to add that there are free versions of Excel on most mobile devices, as well as Google Sheets App... for Apple and Android mobiles...

The current CLL spreadsheets work on these, I have them on a number of devices...

~chris

[neurodervish]

Thanks Neil. What a great resource! My one problem with the cll society spreadsheet is that the docs are locked and, once you add in all your data, you can't modify any typos. Even if you 'save as' a separate doc, they're still locked. Are the ODS docs preformatted to automatically convert percentages?

[AussieNeil Partner Administrator in reply to neurodervish]

I think you should be able to unlock the CLL Society spreadsheet, but check out the alternative, because I designed that to work both with absolutes or calculate them from percentages for both lymphocytes and neutrophils. Check out columns H and J (shaded) on the CBC_CBE tab.

Neil

[neurodervish]

I did check it out and it looks really comprehensive. This is such a great resource. Again, thank you!

[wmay13241]

Here is a great, free website that helps you understand lab tests. It is searchable by tests, conditions/diseases, and screening: labtestsonline.org/map/aindex/

[Cllcanada Top Poster CURE Hero in reply to wmay13241]

Labtestsonline has a very good App as well for mobile devices... iOS, Android and Kindle...

[Hidden]

Quit wasting your doctor's time with unnecessary visits just to "make me feel better." He has people who are really sick who need his time.

A lymph absolute of 11 is low for CLL, a good case of the flu can drive it that high. Start to worry when it gets to the 20~30 range. And even then *how*long* it takes for that to happen is what is important. Doubling time is an important indicator of how aggressive it is. Mine took 6 years to start doubling.

If you want an undate every 3 months go get your own blood test run and compare your results. You don't need a doctor for that.

Your *percent* neturophils are dropping, your body is pumping out more lymphocyctes and the percentage is calculated from each of those divided by all the component cells in your bloodstream. It doesn't necessarily mean your body has fewer neutrophils; look at the absolute counts.

[Jemisavs5 in reply to Hidden]

Lab rat you don't really know me and to think I want to waste the doctors time is really not nice to say. I am newly diagnosed and have enlarged lymph nodes all over my entire body. Golf ball size under my arms that keep me awake at night. Large ones in my groin causing lower extremities to swell. I can't walk up the stairs without getting out of breath Meanwhile just last year I ran a half marathon. I have lymph nodes all over my neck and it hurts all the time. I just had two abnormal mammograms and went through painful biopsies. I am a single parent with four children in college. I can't afford a richters transformation. I hope you now have a better understanding of why I would like to be seen more regularly. Hope all is well with you.

[Newdawn Administrator in reply to Jemisavs5]

Hi Jemisavs,

It's clear from this additional information you've provided why you're understandably concerned. It's not only about the numbers particularly where there's bulky nodes which can impact on organs and cause severe discomfort and restrict mobility. Being newly diagnosed your anxiety levels must be intensified.

No member has any right to suggest you're wasting your doctor's time particularly without being in full possession of the whole picture.

I wish you well and I hope you can receive the right level of medical oversight to help maintain the decent quality of life you have every right to!

Newdawn

[Jemisavs5 in reply to Newdawn]

Thank you Newdawn!

[Peggy4 in reply to Jemisavs5]

Hi Jemisavs. Don't worry about seeing your Dr. It's not all about our bodies, our minds are important as well. Our psychological state impacts very much on our physical wellbeing. The fact that I was allowed to discuss my Anxieties with both a very understanding GP and consultant helped me tremendously to come to terms with it all.

Peggy

[tubbing in reply to Hidden]

I'm a "lurker" (I think that's what they call people like me. I get a lot of help without often commenting) but I think if you need reassurance you should get it. we often waiting over an hour after our appointed time when we go for check ups but I don't moan (well I do but I'm British) We never feel rushed in our appointments and can spend time/ask whatever questions bother us and if that applies to everyone else I am happy to wait so if you've a concern you are not wasting the drs time

[MsLockYourPosts Passed Volunteer in reply to Hidden]

Totally inappropriate comment from "Hidden". Took your name off? Smart patients are involved in our care, and sometimes that means assessing our personal needs at any point along the way. A doctor who thinks you are wasting his/her time is not worth your time! A good hematologist does more than ordering labs, poking at lymph nodes, and telling us when to show up again.

[ballyhoo]

I think when your doc said 6 month check up that sounds great. Best wishes to you and all.

[BeckyLUSA]

I am on an every 3 month blood work schedule, but only see the dr every 6 months unless the intervening blood work shows something really changing quickly. They would call and get me to come in if something has gone up too quickly. You might want to try that angle.

[carnvellan]

Hi jemisave - see the medics as often as you need. I saw the consultant in leukaemia a couple of weeks ago on a 6 month review and will not be seen again for 12 months unless I bring it forward. That suits me fine as I call the specialist nurse and my GP whenever I want and they are very helpful and co-operative. I keep a record of my blood results using this site's excel spreadsheets and follow the conversations here. Don't hesitate to see your doctors and nurses. It's your life. And congrats on the half marathon.

[Peggy4]

Agree with the 'waiting' bit by 'tubbing'. I am given a time for my appointment but told that there will probably be a wait. This, I am happy to do as it means that someone will have that little extra time if needed to explain something or put their minds at ease. My consultant at my first appointment even took the time to ask my daughter who accompanied me how SHE was feeling about it all.

Peggy