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Questions submitted by readers and answered by the CLL Society Medical Advisory Board
By Susan Leclair, PhD, CLS (NCA)
What are the best markers in my blood tests to judge the progression of my CLL? At what level would a doctor generally start treatment?
Hi, I recently received my IGHV test it reads as Borderline Hypermutated @ 97.83%. I am also a Normal Karyotype with no deletions to tp53. I do not fit into a lot of the categories that are out there for most people, so I am having a hard time understanding all of this. Are these markers decent? I am 49yrs old, live in Canada where frontline is FCR. Thanks.
Here is the answer from Dr. Susan LeClair: Well, the good news is that IgHV is a good prognostic sign in that these cells are more mature than they could be. This maturity allows them to function better – even being malignant – and respond better to various treatments. Additionally, the normal karyotype and the no deletions to tp53 are other good prognostic signs.
But (isn’t there always) These signs will work better with the new agents than FCR when treatment time comes.
Hello, I have received my IGHV test back. It bears the IGHV2-26*1, IGHD is missing. I cannot find anything on the IGHV2-26 gene is this part of the good group in IGHV4-34? I am Borderline Mutated.
Here is the answer from Dr. Susan LeClair: IGHV2-26*1 is the more technical (think genetic scientist) for the specific location on the chromosome for what we all call IgHV. It is thought some disease subsets (i.e., IGHV3‐21, IGHV3‐23) display a bad prognosis while disease subsets ( (i.e. IGHV3‐72, IGHV3‐30)are associated with particularly good clinical outcomes. I suspect that the D region (IgDH) was not specifically tested in this situation either because the primers were used to hunt for it or that the amount of it was considered to be be too small to be sure that it was not a procedural fault. This is one of those topics you need to ask your physician as he/she probably has the background on the specific test that was used.
Last few yrs. keeping track of lab & consulting oncologist. Physically have had repeat infections including MRSA. newly pre-diabetic at 5.8
Consistently, every single lab result absolute Lymph is always high between 3.7-over 8 at times. & Platelets always high. Iron as low as 10. Theres been rare highs such as c-protein, asorbic acid, ESR, Calcium, etc. others have been normal but just points away from high, Hemoglobin, hemotocrit, to name a few. And WBC more times are high or close to high at all times. I think I fall under the ‘wait & see’ dx CLL. Physically I often have lymph tumors in Axillary both arms. Benign. Is there any tests I can take that would favor, not diagnose, CLL or other disease? Would doing the fingerprint of cell surface protein test give a better idea of any abnormal presence, and if any, how much. That way a ‘Time-table’ can be gauged when future labs change that I can have as some sort of guidance. This is a trial in itself.
Here is the answer from Dr. Susan LeClair: You really need to set up a time to meet with your physician. I would suggest that you, if you have not already, construct a chart (Excel will do) in which you list the
date and time of the day at which the specimen was collected;
whether or not you were in a fasting state;
what, if any, signs or symptoms were you experiencing at that time;
a note if the collection was done at a a different site from the majority of the collections; and finally, the actual result.
Put these so that you can read the results across the same line.
CLL is usually characterized by an absolute lymphocyte greater than 5×10^9/L and you do not always have that. Increased platelets counts are also not commonly seen in CLL but can be seen in many other situations.
I would ask him/her:
- Can you explain the ups and downs of these results?
- Why do you think that I have CLL?
- Would you consider flow cytometry or genetic analysis to clarify this diagnosis?
- How do you explain the nonconforming results?
- How are you connecting the benign lymph nodes to CLL?
- If not CLL, what are your top 2 or 3 choices and how do we discriminate amongst them?
Hope that helps organize your next steps.
My wbc differential lymphocytes is low 11.8 and my wbc absolute count lymphocyte normal what does it mean?
Here is the answer from Dr. Susan LeClair: Without the total white blood cell count, it is impossible to say anything with detail. Percentage differentials are prone to misinterpretations because they must total 100. If another cell line is increased, then by definition, another cell line must be decreased.
WBC. % grans. % ly. Abs grans. Abs. Ly
4.0. 60. 40. 2.4. 1.6. All within range
12.5. 60. 40. 7.2. 5.0. Absolute lymphs are increased
It is better as well as much easier than to follow only the absolute counts.
The normal monocytes levels are 8.0 and mine are 15.1, is this something serious that I should call my doctor about (She didn’t seem to concerned when she saw my blood test results but to be fair she wasn’t really looking at that since it was for other things.)
Here is the answer from Dr. Susan LeClair: Monocytes are an ornery cell. They are supposed to be in the tissues where they act as scavenger cells, taking away dead/dying cells and daily debris. They use the blood stream as a highway of sorts when they move from one site to another. So, days with smog, they increase in number. Days after any treatment, they increase. Says after a bee sting or a bruise, they increase. They can actually go into the 30’s one day and plummet to within range the next. Lots of people with stress on the “clean up” brigade will have a consistently increased number. Not to worry.
My only medical insurance is the veterans. I have been struggling with numerous symptoms and they are not finding a diagnosis. I have some labs done in the last few years by outside labs when I could afford them. My Lymphocytes and my Neutrophils are high. Lymphocytes on this one are 65.4 % lymphocytes absolute 4.32 x10^3/uL and neutrophils % was 25.6 . I have had other results like this when my psychiatrist did a complete blood panel. He was concerned also, told me to go to my primary and they did not seem alarmed. Should results in this range worry me. I had not had an infection, but I was feeling very fatigued and my bones and muscles always hurt.
Here is the answer from Dr. Susan LeClair: From what somewhat suspect math suggests, your white blood cell count should be somewhere between 6.8 and 7.5 If that is so, then there is nothing wrong with the lymphocytes. They appear to be increased because there are actually fewer neutrophils than one might expect. I am guessing because you really need the correct white blood cell count here.
Decreased neutrophils are seen in lots of different situations ranging from insomnia, chronic inflammation such as arthritis, low grade infections, as a reaction to many different medications especially but not limited to cancer drugs, aspirin and other anti-inflammatories … and the list goes on.
The trouble with this situation is that neutrophils “live” in two places, the blood and the tissues. We can only count the ones in the bloodstream, so it is possible that your neutrophils are adequate. You might want to say to your V.A. Physician that you wish him/her to evaluate the cause the neutropenia.
Susan Leclair, PhD, CLS (NCA) is Chancellor Projessor Emerita at the University of Massachusetts Dartmouth; Senior Scientist, at Forensic DNA Associates; and Moderator and Speaker, PatientPower.info – an electronic resource for patients and health care providers.
Originally published in The CLL Society Tribune Q4 2019.