Secret Handshakes
I want to let you in on a little secret: the medical jargon that patients find so intimidating is just that – jargon. Plumbers have their jargon, accountants and engineers have their versions, doctors’ jargon is no different. It is a short hand way that the members of the club talk to each other, because they all know what the jargon means, it saves time and it makes for efficient communication. It also has the added benefit of shutting out riff-raff like you and me, cloaking often very simple concepts in awe inspiring mystery. In reality, it is often nothing more than the ’secret handshake’ you must know before you are a full fledged member of these exclusive clubs. After reading these series of articles I promise you will be able to understand every single last number on your latest CBC report. This first article of the series will focus on lymphocytes, one variety of white blood cells.
CBC
There it is – the very first acronym we will de-mystify. “CBC” stands for complete blood counts. Yes, it is a blood test, but I would hardly call it complete. But we will let that pass for now as unjustified self importance.
Before we discuss the results on your CBC, it is important to know a little bit more about blood – you know, that gory red stuff that oozes out when you cut yourself. Since CLL is a blood cancer, it sort of makes sense we understand a bit more about blood, you think?
Blood is made up of a clear liquid called plasma, with a bunch of cells floating in it. In general terms there are three types of cells: red blood cells, platelets and white blood cells. Red blood cells carry oxygen and I will write a lot more about these very important cells in a later article; we have discussed platelets before, they help clot blood so you don’t bleed to death every time you nick yourself shaving; last but by no means least, white blood cells are the ninja police force that help keep your body free of germs and other pathogens.
Blood = plasma + white blood cells + platelets + red blood cells + a few other cells.
White blood cells are awfully important. Without these fearless warriors patrolling every nook and cranny of our bodies looking for foreign invaders, we would soon succumb to every viral, bacterial and fungal infection out there. Without them our bodies would be so much dead meat, spoiling in the heat unless refrigerated. I know, that is a gross image but it is also a very accurate image.
If you were to take a few tablespoons of fresh blood, put it into a glass tube and spin it around really fast in a centrifuge, all the cells in the blood would settle to the bottom of the test tube and a clear liquid will be on top. In between the two layers will be a thin boundary of off-white grubby looking stuff, called the “buffy coat layer”. The liquid above is plasma (mostly water), and it makes up more than half of the blood by volume. The thin buffy coat layer contains all the white blood cells and platelets. Red blood cells settle to the bottom and this layer is slightly less than half of the total blood volume.
The lab tech draws your blood, puts it a little tube that then goes into a machine about the size of an office Xerox machine, and in a few minutes the machine spits out a sheet of paper with the numbers of these three types of cells (white blood cells, red blood cells and platelets) and a few more details. That’s it, that is a CBC test in a succinct nutshell.
Just a decade ago it used to take a lot more time and effort, lab techs squinting into microscopes to actually count the cells manually. Nowadays this test is completely automated and dirt cheap; which is why insurance companies don’t complain about paying for it and so many more CBC tests are ordered by doctors. Some researchers think the number of people diagnosed with CLL each year is increasing simply because more people are getting an annual medical check up that includes a CBC
White Blood Cell counts
Or WBC, if you prefer acronyms. There are three main kinds of white blood cells. (I am ignoring eosinophils, basophils and monocytes for now. Their numbers are small and not all that relevant to us. I will discuss them briefly later in this article). There are B-cells and T-cells. Both of these are generally lumped together as lymphocytes since they like to hang out in lymph nodes. The third type of white blood cells are called neutrophils. Older labs may refer to them as “segs” or “bands” or “granulocytes”. Don’t let that spook you, same thing little difference. So, here are the first shortcuts to understanding your report:
White blood cells = B-cells + T-cells + Neutrophils
Lumping together B-cells and T-cells, this becomes
White blood cells = Lymphocytes + Neutrophils
Absolute Lymphocyte Count
Now you are ready for the next three letter acronym, ALC (absolute lymphocyte count). It is nothing more than the name implies, the total number of lymphocytes (B-cells plus T-cells) in the sample of your blood. Since CLL is a cancer of B-cells and the cancerous B-cells grow out of control as the disease progresses, it is understandable that patients get a little fixated on the WBC and ALC in their lab reports. Understandable but not really recommended. We will discuss that point later in this article.
(CLL is a B-cell cancer most of the time. There are a small percentage of patients with a type of CLL associated with T-cells. Not my sand box, we do not really discuss T-cell variant of CLL on this website).
Sometimes labs report the ALC number directly. Sometimes the report just gives the WBC and the percentage of lymphocytes; you need middle school math to sort it out, to calculate the ALC. Here is an example.
WBC is reported at 27.8K and the percentage of these white blood cells that are lymphocytes (“%lymphs”) is reported at 75%. How many lymphocytes are present in this case? What is the ALC?
ALC = WBC x % lymphocytes.
(Remember, 75% expressed as a fraction is 0.75)
ALC = 27.3K x 0.75
ALC = 20.5K
See, piece of cake. Same way, if your report gives the WBC and the ALC, you can calculate the percent of lymphocytes by plugging into the same equation.
ALC = WBC x % lymphocytes
20.5 = 27.3 x % lymphocytes
% lymphocytes = 20.5 / 27.3 = 0.75 or 75%
Importance of ALC
As we said above, ALC is the sum of T-cell and B-cell counts. Since we are talking of B-cell CLL on this website, as your disease grows it makes sense that the cancerous CLL cells will increase in number and therefore your B-cell counts will increase, which in turn will increase the ALC. It is unlikely a big change in your ALC is due to huge increase in your T-cells or healthy B-cells (see exception below), therefore it is reasonable to attribute almost all of the increase in ALC to increase in cancerous CLL cells. One of the functions of the periodic CBC is to monitor the rate at which ALC is increasing, since this is an indication of the rate at which the CLLL cells in your blood are increasing. Patients with indolent CLL are usually asked to get their CBC done once every 3 or 6 months. Patients with a shorter fuse and more rapidly progressing disease may need to get it done each month or even more frequently.
Lymphocyte doubling time
One of the guidelines physicians use in monitoring progression of CLL is to look how fast the lymphocyte counts are increasing. The measure used is the time taken for ALC to double. Doubling time of one year or more is considered hallmark of a slow, indolent disease. If the ALC doubles in a matter of a few months, we are looking at a more aggressive disease. The shorter the time it takes to double the ALC, the more aggressive it is.
When considering doubling times it is important to use common sense. If your ALC was 4.1K (4,100) in July and it went up to 8.3K (8,300) in August, should you freak out? Is that a doubling of time of just one month? Should you write out your last will and testament? In one word, the answer is NO.
First, 3.1K and 6.2K are both within the normal range for ALC even in healthy individuals. Second, even the best maintained CBC machines run by the most talented and conscientious lab techs have a built in error. In my experience, the numbers reported can be off by as much +/- a couple of thousand. If the numbers in July and August were actually 6.1K and 6.3K instead, well within the known built in error of the test, there is not so much to get excited about, right?
Because of the built in errors (we discussed some of the trivial reasons why lab counts could be off in our article on “When platelet counts start dropping”), I strongly urge you not to get fixated on every little blip up or small drop in your lab counts. The sensible thing to do is plot your data on a chart, look for overall trends. You can do it with a simple piece of graph paper and a pen, or you can do it on the computer, downloading the free-of-charge “Your Charts” spreadsheet program we supply on www.clltopics.net
So when should we sit up and take notice? If the ALC went from 50K in July and 100K in August, now that is worth talking to your doctor about; that is a significant jump, not explained by a simple built in fudge factor in the machine doing counting. It might be worth getting the CBC done more frequently in future to keep an eye on things. It could be that you had a mild infection of some sort, and your body correctly increased the number of white blood cells in your body to fight the infection, hence the sudden rise in ALC from 50K to 100K. If this is the case you will be relieved to see the ALC trend back down to its baseline once the infection has resolved. If on the other hand the march upwards in ALC is relentless, month after month, then it is safe to assume it is really due to increasing CLL cells in the blood.
I am always bemused when patients write to me bent out of shape because their ALC “jumped” by a few points. One patient held the unshakable opinion that his latest herbal treatment is curing him of his CLL, since his ALC count dropped from 27.3 to 25.1 in just one month! WOW! That is more than 10%! At this rate, in a few more months, it will be down to normal levels and he will have been cured. Not so quick my friends. This kind of a drop (or increase) is well within the normal variations in ALC counts and it is foolish to consider it a cause for celebration (or despair).
There is another reason why ALC can go up suddenly. Some drugs, such as steroidal drugs (prednisone, dexamethasone etc) or immune modulating drugs such as Revlimid (lenalidomide) can cause dramatic increase in ALC. In the case of steroids it is because the drugs cause cells in the lymph nodes to get flushed out, dumped into open blood circulation. All those CLL cells hiding out in the swollen lymph nodes suddenly getting kicked out into the blood will make the ALC numbers shoot up. But this is nothing to worry about. In fact, it is one of the reasons why high dose steroids work in the case of patients with bulky lymph nodes. Once the CLL cells are out in the open blood, they are fair game and much more easily killed. This is one explanation of why combination therapies such as Rituxan + HDMP (high dose methyl prednisolone) and Campath + HDMP work well in bulky adenopathy cases. The high dose steroids do a good job of flushing out the CLL cells into the open, then the monoclonal antibody drugs (Rituxan or Campath) get a chance to kill them before they can hide again.
“Treating the numbers” is not smart
There is another good reason why it does not make sense to get fixated on your ALC counts and that has to do with the nature of CLL. As we mentioned above, the word “lymphocytes” is used for B-cells and T-cells because they hang out in lymph nodes which includes “glands” under your chin and around your neck, armpits, groin, and many more lymph nodes you cannot feel deep in your abdomen; even your spleen and bone marrow are considered a part of your lymphatic system.
Did you know as much as 90% of the CLL cells are not to be seen in your blood because they hang out in the lymph nodes, swollen spleen or liver, or bone marrow? Measuring the ALC is like looking at the very tip of the iceberg and trying to estimate how big the sucker really is, how much of it is hidden from view under water. What makes it harder still is that different patients have different distribution patterns of the CLL cells in their bodies.
Let us take an example. Patient A has an enlarged spleen and swollen lymph nodes under his chin, enough to make him look like a pregnant chipmunk. His ALC is a around 30K, does not seem to increase all that much from month to month but his spleen is getting bigger and his doctor is suggesting a CT scan to look for even more enlarged lymph nodes hidden in his abdomen.
Patient B has no swollen lymph nodes in his swan-like neck, and even with digging deep his doctor cannot feel the tip of his spleen. Belly is flat (unless there is beer involved). But the poor guy does have a problem with his ALC. It is around 70K and rising by about 5K or so every month. ALC of 70K and rising, that is much worse than Patient A with his stable 30K, right? Wrong!
Patient A probably has many more enlarged abdominal nodes that cannot be felt by mere physical exam, but given his bulky lymphadenopathy (big word that means swollen nodes or glands) and swollen spleen (“splenomegaly”), chances are good a CT scan will find a lot more enlarged lymph node clusters in his abdomen. The 30K ALC in his blood test is nothing. It is a mere tip of the iceberg, as much as 90% or more of his disease burden (total number of CLL cells in the body) are in those swollen lymph nodes, spleen, may be liver and bone marrow, beyond the reach of a mere blood test.
What makes it a more dangerous situation for Patient A is also that CLL cells floating around in the blood are a lot easier to kill by just about any therapy. But CLL cells tucked away in lymph nodes are in a protected environment surrounded by “nurse-like cells” that make it easier for them to survive and avoid getting killed by chemotherapy. Potent drugs such as Campath cannot even touch them, not if the nodes are bulky. Besides, if the CLL cells are lurking around in the bone marrow they can do much more damage – as in prevent proper function of the bone marrow and prevent creation of needed red blood cells, platelets and neutrophils. Heavy liver infiltration (“hepatomegaly”) means poor liver function which leads to all kinds of other problems. Spleen that is heavily infiltrated with CLL cells can cause trapping of good red blood cells and platelets (pretty much the same effect as a clogged filter), causing anemia and bleeding problems. One (but not the only) option for dealing with a grossly swollen spleen is surgical removal – splenectomy.
Patient B, on the other hand, is probably in much better shape. True, his CLL is progressing (as seen by ALC increasing each month), but given his total lack of lymphadenopathy (no swollen nodes, normal sized spleen etc.), he probably has far smaller overall tumor load than Patient A. His lymphocyte doubling time is about a year, indicating a pretty laid back and indolent variety of CLL. He will also most likely respond better to any therapy when it is initiated. Just based on the pattern of his disease, I would bet Patient B has good prognostic indicators as well. Patients with the dangerous 11q and 17p deletions (FISH TEST, see our earlier article “Three important blood tests“) often have bulky lymph nodes. Not so patients with the much more indolent 13q deletion. Patients with Trisomy 12 are also likely to have bulky disease.
This comparison between Patient A and Patient B is one of the reasons why knowledgeable physicians do not make decision on when to initiate treatment based solely on ALC. Doubling time is important, but not if there is bulky adenopathy involved, not if there are extenuating circumstances. It is important to consider all the other criteria (B-symptoms, anemia, thrombocytopenia, frequent infections, autoimmune disease etc) before deciding to start treatment. In other words, treat the patient, not the numbers.
This is the part that concerns me most about local oncologists with busy practices, who are short on time and not quite caught up on their latest CME (continuing medical education) programs. Deciding to treat the numbers does not take much time or smarts. Looking at the whole picture and making decisions based on full understanding of prognostics, risks, rewards and coming up with a long term game plan takes time and expertise. One reason why I recommend that if you (and your insurance company) can afford it, it is a good idea to get a second consultation with a CLL expert before you make that crucial first therapy decision. Shoot first and ask questions later is not a good protocol for CLL patients (or anyone else, for that matter).
T-cells
Let us talk a little bit about T-cells. As we said, the routine CBC does not break them out; B-cells (healthy ones as well as cancerous CLL B-cells) and T-cells get lumped together as “lymphocytes” and therefore T-cell numbers get buried under the heading of ALC.
T-cells are the frontline troops when it comes to fighting viral infections. If these important cells are destroyed or not working the way they should, patients are much more vulnerable to viral infections. The infections can be due to new invaders coming into the body and proliferating unchecked, or they could be dormant traces in the body left over from a prior infection using the window of opportunity to stage a comeback – this later case is called “viral reactivation”.
Some of the best sites on the internet for people interested in learning more about the risks associated with poor T-cell function are the AIDS / HIV sites. HIV is caused by a viral infection of the very T-cells that are supposed to defend against viruses! Patients with full blown AIDS have very low counts of fighting T-cells. They are therefore very vulnerable to viral infections, especially viral pneumonia.
A most painful example of viral activation is shingles. Shingles is caused by reactivation of long ago chicken pox infection you may have gotten in grade school. Most of us have been exposed to this particular Herpes virus; once exposed, traces of it stay in our bodies for the rest of our lives. Anyone who has gone through an attack of shingles can tell you it is not fun. What most of you may not know is that a bad case of postherpatic neuralgia (medical jargon for shingles pain) is totally mind numbing pain that can be very hard to bear, hard to control with even potent narcotic medications, anti-depressants and anti-convulsants. Shingles attacks can also happen in the eye and can cause blindness if left uncontrolled. Prevention is the name of the game. Any one who has had an earlier attack of shingles is much more at risk of a second attack. You should make sure your doctor is aware of the prior history so that you can be better protected with daily acyclovir, famcyclovir or valacyclovir antiviral drug therapy as needed. Many of these medications have been tested in millions of people taking them on a daily basis for years at a time, since they are also effective in controlling genital herpes.
What causes T-cell function to go down? CLL is a B-cell cancer, but since B-cells and T-cells work hand in hand in many ways, a cancerous B-cell system can bugger up the T-cells too, make them lazy, crazy and downright nasty. Lazy as in not doing a good job of taking care of viral invaders, crazy in not being able to tell good guys from bad, and downright nasty as in attacking perfectly good red blood cells and platelets and killing them. This last bit of nastiness can cause two autoimmune diseases common in CLL: namely, AIHA(autoimmune hemolytic anemia ) and ITP(Idiopathic thrombocytopenic purpura).
Another good reason for poor T-cell function is dropping T-cell counts, there are just too few of them around to do the job right. This could again be due to the CLL itself, because it hogs all the prime real estate in the bone marrow and lymph nodes and does not give the T-cells a chance to live long and prosper (multiply). But an increasingly important reason for dramatically decreased T-cell function is the effect of many of the modern drugs used to treat CLL. Campathand fludarabine are prime examples of T-cell killing drugs. Dr. Terry Hamblin is on record saying CLL patients treated with chemo cocktails containing these drugs have T-cell counts as low as AIDS patients. A well known CLL expert echoed this sentiment, he recently described Campath as “AIDS in an infusion bag”.
Wow, that is one harsh message for patients looking at these particular drugs as therapy options. But once again, I caution you to remember this mantra: DO NOT throw out the baby with the bathwater. DO NOT use fludarabine or Campath if you do not have an incurable cancer called CLL. But if you are facing aggressive disease that needs to be treated, and your choices are treatment with these or similar drugs or sickness / loss of quality of life / death, please do make sensible decisions. And that means doing what you have to do to live today, to fight another day.
What are “Normal” ALC counts?
It is hard to understand things out of the ordinary without first understanding what a noraml CBC looks like. Here is an example of what a normal CBC report looks like. Since this is my CBC report from a couple of months ago, we will not quibble about the implications of the term “normal”. A few of my friends would disagree with that description, not unless you consider Don Quixote “normal” as well.
I have abbreviated the CBC report to include just the stuff we discussed in this post. I will expand it to its full glory as we discuss additional items in the later articles of this series.
Note this test is called a “CBC with differential and platelets“. That means the test will report lymphocytes and neutrophils seperately, not just lumped together, and it will also report platelet counts. Some of the labs doing a “quickie” CBC may not bother to break out the lymphocytes and neutrophils, may not bother to even measure platelest counts.
The first line is WBC at 6.9. Next column tells you there is no flag on this item, nothing out of the ordinary here. Next column gives you the units in which the count is measured, in this case it is 6.9 x 1,000 cells per microliter. Next column over gives the reference range of what is a “normal result” for this testing facility. It is important to realize that different labs (and different countries) have different normal ranges and your own results are to be taken only in the context of what is normal for your particular lab. In our example, the normal range for WBC is 4.0 through 10.5 and at 6.9 my WBC is comfortably within this normal band. If I had an infection of some sort when the blood was drawn, it is very likely that my WBC would be over the normal limit. It would also come down back into the normal range once the infection is resolved.
Going down the chart you will see the report gives the percent Lymphs and Neutrophils (at 29% and 62% respectively). Once again, nothing out of the ordinary and within normal ranges.
Next the report gives the ALC and ANC (absolute values for lymphocytes and neutrophils respectively). Even if these two numbers are not given, I hope you know by now how to calculate them from the WBC and the percent Lymphs and Neutrophils, using the equations we discussed earlier in this article.
Adding up the Lymphs and Neutrophils falls short of the total WBC (29% + 62% = 91%) and looking at absolute counts 2.0 + 4.3 = 6.3, a tad short of the 6.9 WBC number . The missing 9% (0.6 in terms of absolute counts) are made up of monocytes, eosinophils and basophils, the three cell types we have sadly neglected in this article. We have also ignored “Natural killer cells” , think of them as sort of Rambo T-cells on steroids and without as many inhibitions about killing. I will address these cell types in more detail if any of our members raise the issue in the comments section.
That’s it for lymphocytes, probably more than you bargained for. The idea is not for you to remember each and every detail we have spelled out here. As long as you understood the general drift and you know where to find the information again when you need it, you are in good shape. There will be no pop quiz, you don’t have to know this stuff by heart. In our modern internet age, half the time knowledge is just knowing where to find the information you need, quickly.
Next stop, we will look at neutrophils: why they are important, what happens when there are too few of them (neutropenia), precautions to be taken if you are neutropenic, what can be done to shorten duration of neutropenia.
57 comments on "Complete Blood Count: lymphocytes"
Are you not confusing shingles which rarely recurs with recurrent herpes simplex? I think it is important because the latter is given prophylactic antivirals.
Howard
skinman300:
No, I am not.
Postherpetic neuralgia is a complication of shingles, a second outbreak of the varicella-zoster virus, which initially causes chickenpox. This too is a virus of the Herpes family. While healthy individuals rarely get shingles, immune compromised people (CLL patietns, AIDS patients, people undergoing immune suppreesive therapy or old people with poor immune function) can get shingles – not just once but several times. My mom got shingles a couple of times and she does not even have CLL. But she is elderly. You can read more about Herpes Zoster (shingles) at this and many other websites on the internet: http://www.nlm.nih.gov/medlineplus/ency/article/000858.htm
Herpes family has a many members in it. Herpes simplex is another member of the family, it often causes “cold sores” or cankers on the mucous membranes of the mouth and elsewhere.
Chaya-
I am happy to see that you used the, “tip of the iceberg”, analogy concerning lymphocytes and WBC. Many CLLer’s still do not understand that the cancer cells stealth away in many places in the body. Great article for all of us.
BTW—your blood counts look fantastic! :)
Jenny Lou
Hi Chaya,
My CLL husband was hospitalized last week with evening fevers of 103, fatigue and weakness; his WBC at 2.X – 1/2 the normal – it was normal last month. Dr. thinks he is trying to fight an infection and having a hard time fighting if off; treating him with antibiotics. Cultures didn’t grow; They think they will never know the cause of the infection. Is it not important to learn the cause?
Thanks,
Jan
Jan:
It sounds like your husband has significantly lowered neutrophil counts, and most likely poor T-cell function as well if he has recently been through therapy.
Bacterial infections are easier to treat since we have a nice selection of broad spectrum antibiotics. If it is a bacterial infection, it is not always important to know what particular bacteria it is, since one of these broad spectrum drugs kills most bacterial without hesitation.
Viral infections are another matter, since we do not have broad spectrum anti-viral medications. Each anti-viral drug works only on a specific virus (or a small set of viruses belonging to the same family) and it becomes important to know which particular virus is infecting him. Identifying the viral culprit is not easy and that makes the problem more difficult. Drug resistant viruses can make the situation more dangerous.
Fungal infections become another order of magnitude more difficult. There are only a few anti-fungal medications available and identifying fungal infections is extremely difficult. All in all, fungal infections (fungal pneumonia, for example) are extremely hard to diagnose and treat successfully. (Stacie, I was thinking of you as I wrote this response. Do chime in with your experience if you read this article)
Let us hope your husband has a bacterial infection, since they are the most common; or an easily recognizable viral infection that has appropriate anti-viral medications available to treat it.
You ROCK Chaya. Thank you SO MUCH for this article and those to come on this topic. I have been studying this stuff for nearly two years and I still get light headed.
Your template graphing spreeadsheets have been of tremendous help as well. It always blows the docs away when I break out the charts and pin them down with informed questions.
You make me smarter about all of this. Thank you.
Tip of the iceberg, indeed. My counts continue to hover around the normal range. But the ever popular Bone Marrow Biopsy tells a different story as does the CT scan.
I’m tired of being having the “good kind” of cancer, anybody want to trade? I want my old life back…
Wish me luck when I finally elect for transplant, probably after I finish my current clinical trial.
A very lucid and useful article. It’s easy to forget the basics! Thanks.
Thanks Chaya. I’ve been waiting for something like this for a long time. For somebody who has CBC tatooed on their forhead, and carries around a mirror all day so I can look at it every 15 minutes I feel a lot better about my numbers. I’ll throw away the mirror now, and pull my hat down over the tatoo until I figure out how to get rid of that damn thing. Thank you. Chuck D.
Excellent article. Keep going. People like you make the difference.
I was diagnosed with CLL in 2002 and received FCR in 2005 at the Royal Marsden in England. I have been in remission for 4 years,currently MRD positive. I had shingles but caught it quickly with acyclovir and now I always travel with this drug, just in case. I believe there is now a vaccine to prevent shingles.
My other side-effects or subsequent effects probably from FCR include
diabetes 2, and fibrosis from lung scarring probably by fludarabine. CLL is treated by using powerful poisons administered with great care by some of the finest people I have had the good fortune to meet. FCR is now
free on the NHS in England. We are making progress but still a long way to go.
M37
one note of caution: the shingles vaccine we have heard of this side of the Atlantic contains live virus. There is a huge controversy about whether or not CLL patients should get this vaccine. The worry is that in their immune compromised state the live virus in the vaccine (even though it is a weakened virus) may precipitate the very disease it is trying to protect against.
My two cents for what they are worth, vaccines with live viruses are contra-indicated for CLL patients.
For what it’s worth, as an addition, blood serum is blood plasma with the clotting factors removed.
And I’ve read and been told several times that doctors no longer recognize T cell disorders as CLL.
WillB425
Excellent explaination. I’ve always relied on Dr’s info to explain what the blood tests showed. Fortunately, I’ve always asked for copies of the tests, but, never was able to understand. I’m printing this out and keeping in file along side of the six month tests.
This stuff is most helpfull. High Fives Chaya.
WB
Chaya,
Thank you so much for all the information you give us. This recent article on blood work is most informative. I, like many, didn’t fully understand all the information on blood work. Your continuing help is greatly appreciated.
As my Dad always told me, 50% of the doctors graduated in the bottom of their class, and we still call them doctor. This information keeps them on their toes.
Thanks again,
Barry
Chaya-
This is fantastic- I have two new friends who were recently diagnosed with CLL- this is an excellent, very understandable explanation of the CBC. Thank you for this educational tool.
I have had fludara and campath in the past 18 months- I continue (7 months after campath-) to have a lymph count of .02 and low neuts- to say nothing of very few T cells and a low NK count. I do have a CR- but once again campath is not to be taken lightly. I am fortunate to remain infection and virus free but I am vigilant.
Thank you again for this information packed article.
Chris
Chaya,
Thank you for once again removing the mystery!
Valerie
Chaya,
A while back, when I was wondering about CLL and my high ALC, I googled and found a docs comment that some measurements of high WBC have more error because they are so out of range of the usual equipment that an additional extrapolation process takes place to do the measurement. (I think it was a dilution of the blood to get the counts more within the range of the equipment followed by a multiplication of the result.) Have you heard any discussion on this?
Thanks for a great article,
Lynn
LynnS:
Yes, instruments are calibrated to be at their most accurate in the range that they are supposed to work at. In the case of WBC and ALC measurements, that will be the normal ranges of these two counts in healthy people. If the actual counts being measured are way off that “normal band”, chances are likely that the error bars will increase.
Very high WBC and ALC counts (or very low ones, for that matter) are likely to be more error prone.
Chaya:
For the last five and a half years I have had mostly asymptomatic smoldering disease.During that time I have done a lot of reading to try and understand my situation better. There are very few articles that I have been able to find dealing with lab tests and what the really mean and how they might relate to my situation.I found this to be a very good and a very informative article.Thanks for clearing up a number of questions that I have not been able to find answers to. I am looking forward to you future articles explaining what labs really mean.
Thanks for all that you do
Scott
Chaya,
Another tour de force. It is not easy to go back to the place where this was all new information for you and explain from that naive point forward.
Another small details. Expect your results to vary from lab to lab. Try to follow trends at one lab
The actual culprits in ITP and AIHA are unclear. Some studies suggest it is the healthy B cells, not the T cells, perhaps misdirected by the CLL B cell clone that are leading the attack on the platelets or RBC. Some say that is why Rituxan works for many with or with out CLL
I am going to the LRF Conference in Brooklyn this weekend and would love to save hello to any CLL friends there.
After that I am seeing Dr Rai. My ITP is still controlled with only IVIG, but I know I will need more soon, and I want his opinion
Be well
Brian
Chaya,
Great information. Thank you for helping us, cll patients.
Monique
Chaya,
Again, you have shared your gift for making what would be complex and tedious for people like me – interesting. Thank you. In spite of all my reading, I still needed CBC 101. I’ll keep it handy.
Marcyne
Use of the so-called “manual differential” (as opposed to the automated differential done by the machine) is the most accurate means of determining the distribution of WBCs.
In this test (which the doctor’s office must specifically order when a CBC is ordered) a human being actually counts the cells and totals the %age of each type.
While the possibility of “human error” remains, the reported result is much more likely to be closer to the truth than are automated differential counts. At times the automated counts can be very inaccurate, especially when there is a disproportionate amount of a particular cell type (lymphocytes for example) or when cells are “immature” or “atypical”.
If one’s physician isn’t taking the time to mark the request on the lab requisition, a simple request for them to do so should suffice.
I would also echo Chaya’s admonition not to get hung up on small changes in the #s…they really are usually of no consequence, no matter which direction they are moving in.
Good luck to all,
Rick
Another masterful summation, moving from the very basics to the technical information we need to know, without patronizing or “dumbing down.” It helps a lot to know the jargon. (In almost 5 years of w&w, I have learned to check that a CBC has been ordered, instead of a simple blood test.)
Thank you so much for staying with us, Chaya!
Chaya,
THANK YOU AGAIN. YES, PLEASE tell more about T calls and NK cells. My NK’s I’ve known for seven years were non existant, but no one paid any attention. Now a funny thing happened on the way to whatever. For the past two years I’ve had slowly increasing WBC’s and more and more Lymph nodes, and feeling like death warmed over. NOT B symptoms I kept being told. Put on IVIG for recurrent shingles, pneumonia, pleurisy, etc. and so many antibiotics I lost count. The one ugly intruder that didn’t have a place at all was a series of oral infections, outbreaks of neuralgia in the head, and still no connection. Finally one endodontist showed me the huge red area dotted with tiny white spots, and dubbed it ‘viral’… my cll doc put me on antivirals and voila.. no more neuralgia, no more fatigue, no more feeling like death warmed over. I have had shingles more han once, EBV, and other viral infections. Is it time to have a blood test to see what my T cells and NK cells are doing ? Why isn’t that part of our routine blood work? I know CLL is a B cell cancer, BUT from your chart, and your wonderful explanations, I don’t see how the others couldn’t also be affected. The overwhelming view seems to be that those cells don’t get messed up until or unless we are undergoing chemo. I have long wondered about that. Bottom line, after all that I am thrilled that I now feel, for the first time in two years that I am back to my old self. even with the LN’s and the WBC… thanks, beth
Excellent work as usual. We all need refresher courses after all the information we try to absorb about our disease over time.
I have a bit of confusion about the difference between lymphocytes and leukocytes. My CBC always shows Lkc which I take to be leukocytes.
Thanks.
Irv
Chaya,
As you expand in your next articles, could you please address antibodies that we might have had (from previous vaccination or exposure .. for example to H1N1-like strains) and what would/could have happened to those older antibodies as a result of the CLL “experience”? CDC says that those of us over 64 may have acquired some immunity to the H1N1 virus and thus are not considered a high risk group, even if we are immune suppressed. I’m not sure the CDC reasoning is right on this, so would love to hear your thoughts when you think it appropriate.
Thanks again for all you do,
Lynn, currently on a “social distancing retreat”
Chaya, thanks so much for the easy to understand explanation. Every time I get my report, I get confused! Even though my oncologist says all is ok for the moment, I still like to do my own research.
Be well,
Jennifer
Wonderful article, Chaya, both as a review for those who have been through CLL already and as a great intro for those new to the disease. You mentioned the controversy over shingles vaccine for CLL patients. As I understand it, the same issue arises with the live (nasal) vaccine for H1N1. I have a really basic question: I have been in full remission for two years after PCR treatment. I am considered to be “disease-free.” Should a CLL patient in this category be considered about such issues involved a suppressed immune system, or does it depend on the case (for example, blood counts)?
Thanks again for everything that you do!
Bob
Lorraine
Every time I read another of your excellent articles, Chaya,I can always relate to what you espouse. I was diagnosed with T cell CLL in 2001. I had had shingles of the eye in the late 1980’s as part of my unexplained blood dyscrasia, which I have had since the early 1980’s & did not have a name until my diagnosis. No one seems to even know if it’s related, but in any event I had a splenectomy 5 years ago for a spleen that was so large I’d had an unexplained cough for 4 years prior (which turned out to be from pressure on my diaphram). Before the splenectomy I was being transfused once a week & my HGB & platelets were not benefitting from the Aranesp I was also taking. I was told that immediately after the surgery my counts would rise significantly, even as I was still in recovery. Instead I crashed & required several transfusions before I was stabilized. Since that time, all my counts have improved (though they are nowhere near normal) except for my platelets, which remain @ around 33-37,000. I seem to have baffled every oncologist I’ve seen & no one can explain why they didn’t improve. I have even consulted with Dr. Kanti Rai who couldn’t give me an answer. Since you seem more well versed than some of the experts, I thought maybe you might have a thought, even though I understand T cell is not your forte. Any comments would be welcome & continued thanks for this site, it is a life saver.
Thank you Chaya. As always you do a thorough job on research and give the best knowledge on the subjects you report on.
I printed this info out and will keep it along with my CBC reports in a folder I have specifically for this. I have been keeping records since 2003 when I was diagnosed and it just gives me what I need to keep tabs on the trend as you say in the numbers. I will also show this to my husband who is learning with me about what all these numbers and counts mean. This does help to make it more understandable.
I just had my ONC appointment today and my doctor also said not to be too overboard with all of this. I was having monthly cbc’s done and he said I should go back to every 3 months and this will give them more of a time frame to look at the counts,because mine have fluctuated up and down the scale in the 20’s to 30’s range for the last 6 months. I am concerned though about my platelet counts. They are on the low end. Going from 85 to 95 and back in the last 6 months. My doctors do not seem to be too concerned. But I am. Any advice on this?
Chaya,
You should receive a medal for all that you’ve done for CLL patients. We are all so grateful.
Thank you so very much.
Kay
Dona Chaya Quixote, gracias para todo….this is so easy to follow. You make our lives so much easier.
Aaron Allbright
Chaya , very well written. Thanks Kathy Mutchler
To clarify: high WBC counts out of range on instruments are flagged, repeated and then diluted and rerun with the dilution factor as the multiplier. In cases of abnormal differential smears, those are also flagged by the instrument, counted manually and usually referred to a pathologist.
Chaya,
Very informative; I wonder if it would be too confusing at this time, for newcomers, for you to explain the new definition / standards for CLL requiring the clone size to be 5000 cells (monoclonal B cells) and not just an ALC of 5000?
Thanks,
Jim
Chaya,
Wow you really got the questions flying on this topic…which is great! You stated in your article that “It is unlikely a big change in your ALC is due to huge increase in your T-cells or healthy B-cells (see exception below)” I may have missed the exception in your article but could not find the exception. I have an ALC of 125%. What exactly does this mean? This has hovered around the same number for a year. All my other counts are in the low normal range except for my platelets which are around 300,000.
Thanks,
Richard
Brian:
The latest think on ITP is that is mediated by splenic macrophages and there is hope of controlling their activity with Syk Inhibitors. Early clinical trial data looks promising. Write to me if you want PDF.
Irv:
“Leukocytes” is another word for white blood cells. As we discussed in the article, “Leukocytes” or WBC = lymphocytes + neutrophils plus a few others cell types such as eosinophils, basophils and monocytes.
LynnS:
Based on numbers thus far the over 64 crowd seem to have lower risk than the younger people. How this translates into immune compromised over 64 people is anyone’s guess. There is no break out of the information on this subject.
Rharris50:
As I said, there is controversy regarding the live virus shingles vaccine for CLL patients. Some experts feel it is OK, others say it is contraindicated. Take your pick. My two cents, better be safe than sorry, avoid all live virus vaccines if you are a CLL patient. Level of immune suppression does not automatically track Rai stage.
Lorraine:
Kanti knows more stuff than most people learn in a lifetime. I would not presume to have answers he does not! My best guess is that you have low grade ITP, removing the spleen helps but does not fix the problem entirely. You might want to talk to Dr. Rai about a new drug called a SYK inhibitor in clinical trials right now.
Ams51:
While platelet count of 100 is the general cutoff and people get concerned when their numbers fall below this, there is really no reason to worry. None of the experts would even consider you a candidate for platelet transfusion until the platelet count get as low as 10K! You are far from it. At the level you are at, the more important question is to keep track of the underlying CLL. Your doctor is right not to be concerned, you should not be either.
Aaron:
Flexing your new found Spanish skills I see..
Jandg:
Some of these issues were addressed in my article on MBL.
Zardoz:
ALC of 125% does not make sense. ALC is a number, not a percentage.
The exception to the rule about huge increases in T-cells and healthy B-cells is if there is an infection going on at the time of the blood draw. T-cell counts and B-cell counts increase during an infection, in healthy individuals. The effect is there but sometimes a bit muted in CLL patients.
Thank you Chaya. It is a blessing to have your explanations so clearly put for those of us who are not in the medical field. I will be looking forward to the next article on neutrophils.
Dear Chaya,
Are neutraphil and natural killer cells one in the same? Also which side of the isle does the primevil ” compliment” fit in?
With Kindest Regards!!
Raymond
Raymond:
Neutrophils and NK cells (natural killer cells) are not the same. Complement is the name given to a set of proteins in the blood plasma.
Kregan…In some labs I suspect that the protocol that you referred to is followed “to a T”. Not all labs likely follow this and certainly wouldn’t pick up those patients with only modest increases in their WBCs. By that I mean, a WBC of 20k might not be treated quite the same as one of 60k, but the ALC derived from an erroneous differential on the lower WBC might be dramatic. While the automated and manual differentials are most often quite similar, I have seen some glaring examples in which they have not even been close.
For my money, if you are following a disease such as CLL with periodic CBCs (not too often, I hope!) I would request that a manual differential be done.
Rick
Thanks. Best explanation of a CBC. Really helpful and clear explanation of the usefulness of steroids in getting the CLL cells into the blood for chemo to work. Does the high does IV steroids that come with FCR do this or is more often needed? Also when one sees the changes in ALC and ANC from chemo is the pathway to them moving up typical in the time period between treatments or in FCR is it likely that the recovery can’t happen until the whole regime of 3 or 6 months completed?
thanks again.
Jerry
Thanks Chaya,
I am like a sponge everytime you publish these types of articles. Very informative and a huge addvantage when working with the local Doc’s.
Thanks
David
Hi I am a newbie to this marvelous CLL, and of course I have a lot to learn (continuously forever). Of course, I want to know it all now. lol. As I am in stage 1 moderate, as my Oncologist explains, I am on the watch and wait. So how do I chat with others who have this marvelous disease. I feel alone with it. I love my family, but, yes a but, my sister is just finishing stage 3 ovarian chemo, doing much better, and my brother just had a heart attack, since I’m on a watch and wait mode, I guess all (lg family) they consider me lucky and I even got a congratulations from a brother in law because I’m not bad. Me, I haven’t felt too much of anything yet. So 2009 has not been a great yr.so far. I am so glad I found this site.
Midge
Hi Chaya,
Great article. I just got my results back from my first visit to the NIH and this was just what I needed. Thanks, too, for directing me to the study. Very interesting to see the NIH in operation.
All the best,
Tom
Chaya,
As great as this article is, it still points out just how different we all are in the way we react to CLL. I am forever searching for answers to why my CLL and immune system react to the aggressive nature and tumor burden I have born in all three areas of the bone marrow, nodes and peripheral blood. If the shear bulk of cancer cells determined the dysfunction of the immune system, why, with counts of 319k, bulky nodes through out my entire body to include the spleen and bone marrow with 91% infiltration am I not only healthy but freer from infection than before my CLL became aggressive??!
Could it be that some people not only have CLL but ramped up healthy B & T cells as well??
The human brain is supposed to excel at detecting patterns and it is clear we need to find the relevant patterns of CLL subsets to treat this disease for good outcomes.
Thanks for this excellent resource,
WWW
Greetings,
I just started the NIH “Natural History” clinical trial so am officially a poster child for “watch and wait”. I can only hope the info they are getting from me will help others on some of the issues brought up in the article. I have to say though that my reaction to the process was a lot more stressful than I thought. postings here encourage me to continue on with it.
Chaya,
So good to have you back. My lymphocyte-related question is about basophils. Many of them suddenly turned up in my latest CBC: 12.5k of them. My online reading tells me histamine, allergies, parasites .. but can my CLL high WBC (166k)also have a relationship to this sudden arrival of the basophil troops? Have others commented on this? I don’t see anything on this when doing an updates search, but thought I would check and hope it’s ok to post this question in this section.
LynnS:
The increase in your basophil counts is proabably quite temporary, due to the causes you read about and mention, and nothing to do with the CLL. I would not worry about it.
Would your response be the same for a sudden elevation of monocyte count?
Just to complete my saga of the invasion of the basophils .. another CBC was done that showed no basophils, although in the expected CLL “good news, bad news” way, my WBC had leaped up to almost 200k. My onc/hema doc thought a lab mistake had been made with the first basophil count .. the report looked different than the usual manual diff report, using a machine generated one instead, and putting in the wrong basophil count. It was also during Thanksgiving week, so the “B” team may have been running the lab or thinking about turkey. Don’t know if others have gone through this, but I find myself wondering when the best time to get my blood drawn is .. i.e. who is the best group in the lab .. the day folks or the night folks? I had been trying to do early blood draw so that my docs wouldn’t get the call about my high counts late at night. However, I’m thinking now that the night crew may be more thoughtful in their handling of my precious blood. Has anyone else found themselves with this inner debate? Chaya .. my apologies if I have meandered too far off track here.
Lynn
I had shingles in September through October of 2009. I had the shingles shot in January of 2008. Note that I had a CLL diagnosis in 2005. The shingles shot did not fully protect me from the impact of shingles, but I had a much milder case than might otherwise have been – no nerve pain. I believe that shingles did trigger an active immune response but also a change in my CLL situation for the worse. I doubt that this can be proved but it is less than a co-incidence that I went from watch and wait to intervention is imminent in the course of about 4 months.
The same thing happened to my mother. She got shingles
(Ramsay hunt syndrome) in July of
2008 and took almost a year to start recovering. She is still
in chronic nerve pain in her face and it has been 18 months since her shingles.
Her CLL took a change for the worse right after the shingles. She was treated with rituxian first
and then chlorambucil but have not been able to get it into remission.
She was just told this week that it has transformed into Richter’s syndrome.
Chaya:
Thanks, a lot of good information.
I ahve CLL with low WBC(2.0)and not treated yet. My doctor siad today that I have to do chemo with FR not FCR.The concern I have is infection due to low WBC. And I know FCR is better than FR but she said the is more risk of infection if she treat with FCR. In the mean time , I know FCR is the way to go.
Please let me know your thoufgt.
Thanks
Ras
Malboubi:
How do you know FCR is better than FR? There have been no one-on-one clinical trials to confirm superiority of one therapy over the other, conclusively. There is good reason to believe FR has fewer adverse effects than FCR, since FR omits “C” (cyclophosphamide) – an alkylating agent of known toxicity. On the otherhand, addition of “C” may prove to be of value in high risk cases. The choice between FR and FCR depends on the specific needs of the individual patient.
Devil is in the details. You need to read and learn and come up the learning curve a bit before second-guessing your doctor’s advice.
Dear Haya
Last weeks I have random pain at my body and a lot of sweating
What to do ?
During my Bone Marrow Biopsy March 2009 the CLL was found at
CD5,CD79A and CD23 were painted CD20 negative
During prostate cancer pathalogy the CLL/SLL was found on Jan/2009
My current CBC Sept 21/2010
WBC = 11.34 %Lymphocytes =54 ALC = 6.126 %Neutrophils=36
HGB= 12.8 Platlet= 159
My previous CBC June 20/2010
WBC =8.26 %Lymphocytes =45 ALC =3.717 %Neutrophils=47
HGB= 12.4 Platlet= 175
thx sincerely Janek
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