Dx 2 weeks ago: B Cell Type CLL/SLL. I've had a bone marrow biopsy and CT scan. Widespread swollen lymph nodes but no 'suspect' ones, NO ZAP70 nor CD38 in surface markers and NO secondaries anywhere. Red blood count is normal. Have another app with specialist on Tuesday. Apparently, have had CLL since about 2011, but didn't know. I am 45. I am curious about the bone marrow 'infiltrate' and hoping this isn't a call to the 'cocktail bar'.
First of all I am not a clinician nor do I have the background info some of the more experienced members on this site have in respect of data. However, what I understand from your comments above is that the bone marrow has a moderate excessive number of 'young' lymphoid cells (these are immature white blood cells). With CLL the white cells do not die off at the normal rate but become inaffective in their role as defence against infections so these cells crowd out other blood cells and the bone marrow gets full of these to the detriment of making other cells such as platelets and red blood cells.
The crux for the clinical experts can be the white blood count and the ALC in most cases (Absolute Lymphocite Count) and there is some great details on blood counts on this site that may be of use to you.
I have to reiterate that I am a patient not a clinician so you really do need to ask the questions from your specialist, however, based on what you have said I don't think you will be joining those of us who are at the cocktail bar just yet.
I have had CLL since 2000 and as a chronic disease you could go on watch and wait for many years before being primed for treatment. Don't panic ask the right questions and learn as much as you feel you can about the desease.
I am sure some of the contributors to this site will give you some really good advice.
Best of luck with you next appointment.
Cammie...thank you very much for replying. I place great trust in my specialist and intend to ask specific questions like this one when I see him again next week. I have my CLL "trainer wheels' firmly in place so in between visits to my specialist, I'm relying on other riders like yourself for info based simply on experience. Again, thank you...and best of luck to you too
Your specialist should provide you with an explanation of your test results, but as Cammie says, there's nothing in what you've reported that is in any way alarming. It is usual, however to give a percentage of infiltration after a bone marrow biopsy. As Cammie mentioned, it's the crowding of the bone marrow that eventually causes problems. To put it into perspective, some with CLL have exceeded 90% infiltration before needing treatment. I was at 55% over 5 years ago and I'm still on Watch and Wait.
You mention that your red blood count is normal, but you also need to check that your other counts - your neutrophils and platelets are also OK. You should also find out if your spleen or liver are swollen - that should be reported in your CT scan results.
Make sure you have someone assisting you at your specialist appointment . Another pair of ears and someone that can take notes will help you get the most out of the brief time you'll get. You could even ask if you could record the appointment as it is amazing how much we can miss when our heads are likely spinning with all the information and trying to work out what it really means...
Let us know how you go,
Neil (also not a clinician)
Hi Matilda,
Mostly good news in what you have written but the proof of how your CLL/SLL will behave must be from watching the trend of how fast your ALC (Absolute Lymphocyte Count) climbs and your red cells (RBC) declines along with HGB (Hemoglobin) HCT (Hematocrit) and platelets. Don't take any single test number too seriously and look for trends. Early in DX in a patient with ALC below ~30k, the count will often fluctuate. Usual infections can drive counts up dramatically only to go back to a baseline.
Everyone is different and we all have a unique CLL so the best advice is to learn as much as you can and to be vigilant.
The "... no 'suspect' ones," is the report's way of saying that all nodes observed, appear to be consistent with CLL and not a different cancer. The concept of "infiltrate" is mostly applied to the bone marrow where significant infiltrate of cancer cell buildup is responsible for preventing the marrow's ability to produce sufficient healthy cell lines. This is why blood testing is ordered to monitor trends of red cell counts. It is useful to think of CLL as accumulation in three basic compartments, i.e. bone marrow, lymphnodes to include the spleen, and the blood. The action is in the germinal breeding centers in the compartments of the marrow and nodes. Least dangerous accumulation is in the blood.
When reading your reports it is best to ignore the % of lymphocytes and neutrophils and focus on ALC and ANC (absolute counts of lymphocytes and neutrophils).
You are young for CLL and being a female I would question the value of CT scanning as you have a potential to live well into a time frame where risk for secondary cancers could be made greater by CT overuse. I have an ongoing series of essays on CT use in the CLL population for which I hope you might read in the archives.
I am a lay-patient and have no medical or academic creds so you need to take all advice as talking points with your Docs and form your own opinions.
Anxiety is one of our worst enemies and knowledge can help alleviate anxiety's sting.
WWW
Hi AussieNeil and WWW,
Thank you so much for that important feedback. Great to know that you are still on W&W AussieNeil! I am rather young to have this. I believe that it began when I contracted glandular fever a few years ago. I kept working through it, rather than resting and ended up with problematic lymph nodes thereafter. My son is a 4th year medical student who noticed the lymph glands under my arm at Christmas. He said it could be a type of lymphatic cancer and kept pushing me to get further tests. I told him that he was only a med student, so what would he know! Don't you just hate it when your kids are right? I'm very healthy otherwise and love my work as a high school teacher. Being among teenagers every day is a gift for the soul. They are robust, naughty, dramatic, complicated and genuine...and they remind me every day of how wonderful life is. Take care to both of you and thanks so much again for your replies
FISH ATM what does it mean?
Bloodwork is stable, watchful waiting,stage 1(ish).What's the chance that the bone marrow biopsy will show anything different or additional?
Still on hold for stem cell transplant
New Diagnosis :what does all this blood work mean? 
High CLL IN BONE MARROW
