Hi all, I’m recently diagnosed and just got my most recent labs back for 1) IGHV, 2) Karyotype, and 3) Beta 2 Microglubin
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For reference:
IGHV - Mutated (5.08% mutation rate)
Beta 2 value - 1.53 (Normal based on my lab); not really sure what this lab is for/tells me but good to know it’s in the normal range I guess.
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My main question is about my Karyotype. The analysis specifically says it is a “limited study” and only “ten metaphase cells were available” and “low mitotic activity precluded the standard analysis of 20 metaphases” and “correlation with other clinical and laboratory findings is recommended” and “This normal result does not exclude a hematological malignancy.”
It seems “low mitotic” activity is a good thing and means that I have very few cancer cells to even test. But what should I make of the rest of it? Can I honestly say my Karyotype is normal right now? Am I supposed to have other tests to confirm? Was the purpose to rule OUT “hematological malignancy” to begin with?
FWIW, my hematologist-oncologist (generalist) is positive and breezy about it and just says I’m good and no further tests are needed and that these results are “fixed” and won’t change in the future. I’m finding that I care more about the actual science behind all of this than she seems willing to give me. At this stage it’s not a concern for me, esp as I seem to be getting back all of the “low risk” results.
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We have a number of confusing things with testing for CLL patients. Sometimes a mutation is good and others are not favorable.
IGHV Mutated is good, likely indicating a slower progression (growth) of your CLL
Normal results from the Karyotype test is not the best possible result - a finding of 13q deletion would be slightly better. See patientpower.info/chronic-l...
From lls.org/sites/default/files... "Beta-2 Microglobulin. This small protein is made by many types of cells, including CLL cells. The protein can be measured through a blood chemistry test. High levels of beta-2 microglobulin (B2M) are associated with a type of CLL that is harder to treat.
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The important thing to remember is that all the above are statistics for the average patient, but the variations from the "norm" are extremely wide. So getting regular exams and blood tests and watching the trends is the best way to determine how quickly your CLL is progressing.
If you have access to several past test results, look for the CBC+diff test and find your ALC (aka Absolute Lymphocyte Count, or Lymph#, etc.) NOT Lymph% and see how quickly it is rising. The normal range for people without CLL is 1.0 to 4.8. Most of us with CLL see this number rise past 30 and then the rate of rise becomes a measure to watch. Most won't need treatment until the ALC is well over 100, often 300 or more.
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I just did a Karyotype and had the same result of 10 out of 20 metaphases available. However, my CLL treatment wrapped up back in March so there are not too many CLL cells in my bone marrow. As a patient I think this just confirms there isn’t a lot of CLL lurking compared to before treatment. So if you are treatment naive I suspect this is a good sign.
Before I started treatment and not long after diagnosis my Karyotype was highly complex with 20 out of 20 metaphases available.
It is great your doctor did this! I get the impression not everyone does.
It isn’t required but the more data we have on patients who might do treatment or trials in the future can help.
I’d ask if they can do it again right before treatment starts. By then you will have enough CLL to know if you are complex karyotype or not.
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