CD38 In CLL

[Laura3mini]

Went for my annual checkup yesterday, WBC at 19.1 from 15.1 last year. Not enough WBC to know if mutated or not. The doctor did confirm I'm don't have 17p but I do have CD38.. according to Goggle I may see God sooner! What's the deal?

[AussieNeil Partner Administrator]

Do you know your CD38 expression percentage? Your IGHV mutation status and the tempo of your CLL are probably more important. Also, keep in mind that Google will be reporting life expectancy before targeted therapies became available. Google information will be at least 10 years out of date.

Neil

[Laura3mini in reply to AussieNeil]

AussieNeil

I just got a response from the nurse.

"CD38+ (partial) B cells that express dim monotypic surface immunoglobulin kappa (23% of lymphocytes, 10% of analyzed cells, absolute count ~1132 cells/mL . With the proteins found on the surface of the cells ( CD38) they usually don't have a percentage. it's just positive or negative.. sometimes bright, dim, partial positive."

Is she right? uhmmm

[AussieNeil Partner Administrator in reply to Laura3mini]

Per this article, which will tell you (and your nurse) more than either of you ever want to know on this topic "CD38 expression identifies two subgroups of CLL patients with different clinical outcomes; this distinction is based on the percentage of CD38+ leukemic cells within a CLL clone. In the majority of studies, the threshold is considered as ≥ 30% CD38+ clonal members."

ncbi.nlm.nih.gov/pmc/articl...

When a potential marker is identified, researchers hope for two clusters of results, correlating with good and poor outcomes respectively. They also nominate a threshold to 'separate' the two clusters, which in practice generally overlap. Sometimes you get an international agreement on the threshold; above equals positive and below equals negative and sometimes you can get more than one threshold as happened with CD38.

The CD38 marker is measured by the amount of fluorescence from attaching antibodies; so dim and bright are just qualitative measures of the amount of expression.

Neil

Flow Cytometry illustration showing attachment of fluorescing antibodies (obfuscata.com)

[Laura3mini in reply to AussieNeil]

Thanks, AussieNeil I knew I should've paid more attention in school. LOL... The above is probably more than I'm able to understand!...! But is good to have the correct source of information for detailed explanations.

[Laura3mini in reply to Laura3mini]

AussieNeil curious….?

do I still fall on either 1. need treatment at some point or 2. maybe never category?

Even thought I’m this “young” [45]…. Like can CLL stop growing at some point?

[AussieNeil Partner Administrator in reply to Laura3mini]

Laura, you noted in this post that you were having your annual check up with your CLL specialist. It doesn't get much better than that when you are newly diagnosed. My CLL/SLL probably started when I was about your age, but because it was the hidden SLL form I was diagnosed when I was 53. My specialist said "You are young, we can do something for you". I didn't appreciate that back then, unlike now, we didn't have treatments that were gentle enough for those over 65. Even now, having youth on your side is advantageous. CLL is rapidly becoming a manageable condition with the expectation that a normal life expectancy can be achieved. Simply by joining and becoming actively involved in this community, you are learning how to best maintain your health, plus you have a specialist monitoring your health through regular blood tests and physical examinations that can identify early on conditions that could otherwise become serious.

You'll read elsewhere that about a third of us never need treatment for our CLL. Being diagnosed while relatively young with CLL does mean that treatment is more likely to be required eventually, but some of us are approaching 10 years management of our CLL by taking just one capsule daily of the first generation BTK inhibitor ibrutinib and there are now a total of 14 BTK inhibitors in trial or approved that are extending the time we can keep CLL under control with less side effects before switching to other drug classes if our CLL develops resistance.

We've only recently begun exploring combination, limited term targeted therapies that could potentially cure many of us. We know that about 55% of us with the right marker (IGHV mutated) achieve indefinite remissions on FCR. Ideally you need to be under age 65 for what was for a long time considered gold standard chemoimmunotherapy treatment. Early FCR trial participants are approaching 20 year remissions. Despite this, the use of chemoimmunotherapy is declining, because using targeted therapies avoids the risk of bone marrow damage. Some US CLL specialists still recommend it, particularly if they are MD Anderson based or came from there, where it was developed. Most specialists now see enough promise in all the new targeted therapies to avoid FCR or other "chemo" treatments, beginning with Dr Rick Furman of Weill Cornell in New York. He was involved in the early ibrutinib trials and hasn't treated his patients with "chemo" for many years now. So in recent years we've switched to treatments that can increasingly keep CLL under control and can do so with less side effects and less likelihood of resistance developing as newer generation versions are developed and new drug classes trialled. See my post healthunlocked.com/cllsuppo...

With regard to "Can CLL stop growing at some point?" about 10% of patients reach uMRD (no detectable CLL) after 4 years of ibrutinib treatment. The new combination treatments are achieving much higher uMRD rates with a year of treatment and we are learning how long such remissions last. The expectation is that we will at least achieve what was proved with FCR and without the treatment age limitation. There's also a 1% chance of spontaneous remission with CLL.

Neil

[Laura3mini in reply to AussieNeil]

Wow! this all makes sense! Dr. Furman mentioned a patient who was a candidate for immediate treatment, he held off treatment for 2 years because he knew ibrutinib was on-its-way! today the patient is doing great! NEVER did Chemo! he is truly amazing at what he does! he even comes with empathy!! haha... Thank you, Neil! I'm hoping the CD38+ is not a confirmation that I am Unmutated! so at least I'm part of the (IGHV mutated) club! God willing! But sounds like we may be even CLOSE TO A CURE!!! Amen!!! CLL needs to GO!!!!

[Sushibruno in reply to Laura3mini]

Yes indeed it needs to GO!

[lankisterguy Volunteer]

Hi Laura3mini,

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I agree with AussieNeil the data you see on Google is a poor predictor of your life expectancy.

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I believe your very modest WBC change from 15.1 to 19.1 is a far more accurate indicator of the tempo of your disease than anything else. You should preferably track your ALC / Lymph# instead of WBC, since the WBC can be noisy from other factors beyond your CLL.

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If I use my engineering calculator and project a straight line progression (both are not accurate for human medicine, but can start a discussion) they would say it will be 8 to 12 years before you might have sufficient B symptoms that would require treatment. And with our current targeted medicines, you might get a complete remission that lasts for 5 to 10 years.

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So since you are 45 years old, your first round of treatment will likely get you to 65 years old, and in that time we will very likely have much better treatments and you will probably have a normal life span.

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Len

[Laura3mini in reply to lankisterguy]

lankisterguy even with a bad market like CD38..

In the last 3 years my Lymph Abs have been as fallow;

(2018) 4.80

(2019) 5.80

(2020) 10.20

(2021) 14.71

Also at the moment I’m in W&W. I just asked the nurse what is my CD38 expression percentage is.. back in 2018 it says … this..

Flow cytometry: Analysis was performed with the above antigens.

The specimen contains CD19+, CD20 dim+, CD5+, CD23+, FMC7

negative, CD38+ (partial) B cells that express dim monotypic

surface immunoglobulin kappa (23% of lymphocytes, 10% of analyzed

cells, absolute count ~1132 cells/mL). The T cells express all

4 pan-T cell antigens. The CD4:CD8 is 3.4 to 1. The T-LGL and NK

cell populations are not expanded. In conjunction with CBC

results,

[lankisterguy Volunteer]

Yes Laura,-

That "bad" marker is only a vague suggestion that you might be UnMutated (I had 35% CD 38 but negative Zap70 and am UnMutated) but all 3 of those only try to predict how quickly your Lymph Abs will rise. Your actual record as you list it (4.8 to 14.7 over 3 years) is far more reliable than all of those together.

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You likely will be between 150 k and 300k by the time you have actual B symptoms and need to start treatment. So my prediction of 8-12 years still stands.

(And you will have plenty of time to spend with grand children and great grand children as I already do).

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Please make certain to follow these 30 tips about exercise, lifestyle, avoiding other infections etc. healthunlocked.com/cllsuppo......

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Len

[Laura3mini in reply to lankisterguy]

lankisterguy Your words are so encouraging!..

I have a question... So the fact that my Lymph is at 14.7 does that mean I'm currently 14,000? I always get so confused about what my exact numbers are.. how do I calculate them.

[lankisterguy Volunteer in reply to Laura3mini]

Yes Laura, -

Most medical systems will keep the numbers in an easy to read range - usually 3 digits, and then use scientific notation to tell the doctors how many zeros are involved.

See calculator.net/scientific-n...

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The best way to not be bothered by it is to look at the reference range and ignore all the zeros. If your number is 14.7 and the reference range is from 3.5 to 10.5 x 10^9/L you can assume there are nine zeros in the value and you are about 40- 50% above the standard range. The zeros don't matter, it's how you compare to the reference range.

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Some doctors will do the conversion quickly for14.7 x 10^3 and if the zero count is 3 then say 14.7 "thousand" or 14.7k

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Some countries will use a count of cells per liter and others will use a smaller quantity like ml (mili liter) dl (deci liter) or mcl (micro liter) etc. So it can be hard to compare from one country to another, until you know the reference range for each.

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Len

[Laura3mini in reply to lankisterguy]

Thank you!

[PSP52]

Google is a search engine. When you search a specific term it will give you all sites that it has with that specific term. Google does not filter out of date information. I don't know where you are located but in the U.S. when you do a search look for an ending that has .edu, .org or .gov.

.com sites are commercial.

[Laura3mini in reply to PSP52]

Thank you! ill keep that in mind

[SofiaDeo in reply to PSP52]

--this!