I was told no question is stupid so here goes… I haven’t seen a specialist yet but have scheduled an appointment. My diagnosis is CLL and all I really know is that my WBC was 15.8 .. two weeks later 15.4 but when they sent it out for more testing I saw it said 16.3.
I’m sure I will understand more when I see the specialist but does anyone have any idea what my numbers might mean? As they say no news is good news but the waiting is provoking anxiety 🙄
Lj,I’m sure your mind and questions are in overdrive. For me the initial shock was over whelming, something you can never prepare yourself to hear. I made the common mistake to start googling and I was spiraling out of control with emotions. It took me a good 6 months to a year to get my head straight. I wasn’t sure if I should tell anyone, if I should get my stuff in order, should I stop working etc…. I couldn’t believe that being fairly young, in good shape, don’t smoke and always took care of myself how could have this diagnosis. I tested telling a few close friends which found some were supportive, others treated me like I was made out of glass and others distanced themselves. That’s a personal choice you will have to figure out and it’s a different choice for everyone. I was diagnosed by a hematologist who basically said this is what you have come back in a year and when you need treatment he would give me chemo. I bolted and never went back there. I went to a larger local hospital and got a specialist who ran all kinds of tests which provided more information but he never explained any of it and always seemed too busy to the point I was never really provided the opportunity to ask questions. I was fortunate enough to find this site and was provided a recommendation for another specialist from one off the major Hospitals located in nyc. For me it was game changing, he took his time discussing my results, treatment options if and when I one need them, the constant Changing landscape of new treatments. I realized that I have to be my best advocate. Question everything, understand your body more and get back to living. Don’t let it consume you and know that every day, week, month and year that goes by make the best Of it and also that there are so many treatments in the pipeline that if and when you need them they will be there for you!
Please continue to read the Pinned Posts that AussieNeil referenced in your other post. As you learn more about the various medical terms, you will understand more and hopefully that will be less stressful overall. Knowledge is power, being able to review stuff with a basic kind of understanding will allow you to follow along better with what the docs say, and formulate questions that address your concerns.
Like many people mentioned the other day, unlike many many other cancers, ours is not one that things generally need to happen/be addressed urgently. If something critical ever seems to be starting, your docs will act faster. It's hard to wait, but try to remember if it was critical they would be calling/urging you to be seen ASAP.
For a diagnosis of CLL/SLL, a immunophenotype flow cytometry test needs to identify a clonal population, that is, identical white blood cells, specifically B lymphocytes, matching a specific CD (Clusters of Differentiation) phenotype (that is, finger print pattern of protein markers in the CLL cell membrane), in either your blood or a lymph node biopsy. There are about 200 different blood cancers with CLL/SLL being the most commonly diagnosed adult Non-Hodgkins Lymphoma (NHL) variant. CLL/SLL is one of around 80 NHLs if I recall correctly. (In the SLL expression of this lymphoma, the CLL/SLL cells mostly accumulate in the nodes, spleen and bone marrow and may not be detectable in a blood test).
The above is important to know for several reasons:-
1) It's occasionally possible for CLL to be misdiagnosed, as it can sometimes be confused with similar blood cancers
2) Blood cancers are fairly rare. A General Practioner/Primary Care Physician (GP/PCP), might see a half a dozen lymphoma cases in their entire career. While CLL might be the most common adult lymphoma, it's also recognised as an orphan disease to encourage the development of treatments through special incentives. That's why treatment options have dramatically changed for the better over the last 5+ years.
For the above reasons, it's in your interest to see a specialist who sees lots of CLL/SLL cases. A general oncologist mostly manages the far more common solid tumours and mostly the commonest of those. They just don't have the time to keep across the fast changing treatment options for the few CLL/SLL cases they might see.
You've reported your elevated White Blood Cell counts. There are 5 different basic white cell types, with one, the lymphocyte count, including healthy B, Natural Killer and Helper and Cytotoxic T cells, along with your CLL cells. Generally your lymphocyte count is around 1.5 to 3.5 (mostly T cells) and your total WBC is under 10. (The reference range limits vary slightly from lab to lab). When the CLL/SSL clonal cells grow sufficiently to exceed a count of 5.0, you meet the diagnosis criteria for CLL. Under 5.0, you either have SLL, or a precancerous condition called Monoclonal B cell Lymphocytosis (MBL), which has a small risk of developing into CLL.
So now from your simple question, you know now:-
1) That your CLL is probably in its early stages, because your WBC is only slightly raised. (We have members in watch and wait with lymphocyte counts well above 200, but node and spleen involvement, plus infiltration of your bone marrow are also important indicators of your stage. The latter is evaluated by monitoring falls in your red blood cells/haemoglobin, platelets and/or neutrophils).
2) To pay attention to your absolute lymphocyte count (ALC), not your WBC. Depending on the changes in your lymphocyte count, your CLL
3) Why you should see a CLL specialist, or at least a haematologist who sees lots of CLL/SLL cases.
Many of us can't regularly see a CLL specialist due to where we live, but make the effort to find one and visit them regularly (every year or so), hoping to establish a relationship between the CLL expert and our local haematologist, haematologist/oncologist or oncologist. Most local cancer specialists appreciate having access to a CLL specialist. This arrangement can add years to your life expectancy, particularly when it comes to knowing when to start treatment and which treatment option, including the possibility to join clinical trials, is best for you. Joining a clinical trial can give you access to the next advance in CLL treatment that might take 5 or more years for approval. It may even be approved in other countries but not where you live, due to the cost, if you live in a country where universal health care is provided.
Neil
Wow Neil, thanks for that. It is really informative and most of which I didn’t know!
Excellent post Neil. Thank you 😊 Dana
Neil … thank you for the time you took to reply. Sounds like I have alot to learn and explore with my CLL specialist which I do have a scheduled appointment
I've a 13 year head start on you 
. Learning more about CLL certainly helps you to ask more useful questions of your specialist and better understand their answers, but it's not for everyone. It does help with knowing how to live with this condition as you'll begin to appreciate what's of concern and what you can safely ignore.
As others have shared, your WBC indicates your CLL appears to be stable, which you now can better determine by checking your ALC, while appreciating that this can bounce around a fair bit without concern. Just keep in mind that CLL is a chronic (slow changing) condition which is eminently treatable. I finished my first treatment just over a year ago and my blood counts are the best they've been in 16 years!
NeilI am in Gurgaon, India Dx CLL 2016.
We hv big and busy hospitals, but no CLL specialists?
I am under a senior doctor, who manages all patients. Any idea how to locate a geniune CLL specialist?
Vineet
I appreciate that it is hard to find a CLL specialist in India. That's partly because CLL is not as common in Asian populations. We do have a few members from India, so I suggest you write a new post, asking for others from your country to share their suggestions.
Neil
Your WBC numbers going up may concern you, but blood counts vary 10 to 20 per cent on a regular basis for numerous reasons. The WBC counts can go up and down depending on the time of day the test is done, test done in a different lab, you are on or coming off a medication like steroids, pain, minor infection, flu and anguish, etc.
The CLL doctors will want to see your blood work done over a period of several months to a year to indicate if it is going up at a significant pace. They may test you every 3 to 6 months to get a feel of where you are going and at what rate.
Don't think "I am heading for a train wreck in a month" and they give me an appointment three weeks away. CLL is not an eminent train wreck just moments away, but more like being stuck on a beltway or highway during evening rush hour traffic. You have lots of time for numerous tests and the making of good and effective treatments. This is called the "watch and wait" period or "watch and worry".
Basically it's the same result and nothing has changed, the numbers are well within analytical and biological variation which could be as wide as 10 to 15% on a single result.
Important point made well.
Putting the same blood sample through the analyser 5 times could give the same variable result.
Jig
Yep.... 40 yrs in clinical chemistry taught me that ...lol
Hey! Yerr! A wise medic once told me, what to do with an abnormal test.
Repeat. 🤷♂️
I recall a raised K+ due to overzealous venesection is a classic. Red cell rupture or something.
I track my results, as we all should, and have been surprised at variations.
The point I'd make though is the importance of a result trend, to see each result in context of previous results, as important.
I am super mindful how fixated we can get over a results. The misery it causes. Me included.
Perhaps you have a view on that.
Jig
As already stated these three results are essentially the same, well within laboratory variation. However the level is raised and would be consistent with early CLL.
More importantly which of the white blood cells are raised. See AussieNeil 's reply.
More tests are needed to scrutinise. The specialist is likely to do more tests to confirm no other issues afoot, and review in some months time.
Meanwhile, live life, this is a long old trek, the CLL journey.
You're welcome to join us as we all navigate our ways. Somehow, together, helps.
🙂
Jig
I was diagnosed stage 4 in Nov 2020, in remission after Obinatuzamab/Ibrutinib with 240 days. I have monthly bloods but to be honest I haven't checked the results for 6 months... my oncology nurse or my consultant would call me if anything changes. BtW .. I have never had an abnormal WBC.
Routine annual blood test for my high cholesterol. HB was 80 and Platelets 50, I felt fine , I had lost 10lbs through the summer but put it down to retirement and been a full time dad to my 4 and 2 Yr olds during lockdown. Had to have a 2 unit transfusion aweek after bloods. Initially I believed it was Fibromylosis due to the blood film morphology, thankfully it was CLL so a great relieve, thus started treatment straight
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