Question for someone that understands all this better than me.
When blood test was done 2 months ago CD38 44%. Now after biopsy and removal of 5 slightly enlarged nodes another test shows CD 38 positive 92%? Does the percentage over 30% matter or is positive positive. Also I understand biopsy gives better sample but 92% compared to 44? Thanks. I am also unmutated unfortunately.
Thanks.
CD38 is a surogate for IGHV mutation... with about a 70% accuracy, which was fine 10 years ago, but now a bit less so, because that mutation can direct treatment choice, which it didn't in the past.
CD38 can change and as you see, can vary by sample. I think you are most likely unmutated... with a count that high, however, I suggest you ask your CLL doctor to run a direct IGHV mutation test... it will be accurate if done in a certified lab, and it does not change over time or for any other reason...
I think the direct IGHV test is very important now for untreated CLL patients, as is TP53 mutation and FISH. There are also subclones which have some prognostic value, but many are not tested for in the clinic, unfortunately.
~chris 🇨🇦
They have now done all the tests and I was definitely confirmed unmutated
Sorry to add to your postings work load but you have raised a point that perhaps readers would like more information on.
You wrote:- ' I think the direct IGHV test is very important now for untreated CLL patients'.
VERY IMPORTANT NOW.??
Mutated versus Unmutated was always important, but what has changed to make this more important now.?
Can you elaborate for the benefit of our readers?
Dick
Hi Dick,
We recently had a discussion on another thread here:
healthunlocked.com/cllsuppo...
And on that one I took the contrarian position that testing for Mutated vs. UnMutated IGHV did not matter, since the poster had already decided to take Ibrutinib as first line treatment.
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So IMO the test is important where the patient is being pushed / required to take Chemo for first line treatment. In some countries the National Health systems require Chemo first and don't fund the mutation test, in other countries (including USA) some doctors still want to use Chemo first line, and some don't recognize the benefit of testing mutation status.
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When there is NOT a clear history of very slow, indolent progression, I would suggest that the mutation test would add key information to the patient to try to avoid chemo, since unmutated would predict a short remission and a need for 2nd line treatment sooner.
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Some recent studies showed a strong benefit of Ibrutinib first and Gazyva / Obinituzumab second for all patients, and that might be far better for UnMutated folks vs. trying to get a long remission from Chemo.
healthunlocked.com/cllsuppo...
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Len
Bryan, I would take this up with a cll specialist. I'll link you to the article and explain why. This article would argue that cd38 is some measure of how active and moving our cll is. The change you describe would be unusual in that, while cd38 can change over time, it usually doesn't change all that much. It might even be in your case that either test you did just might have not been accurate. I have had some tests with very different results myself, my wbc went from 55000 to 77000 to 38000 in three days after my diagnosis.
What I would want to know, if I were you, is whether the doctor thinks the uptick in cd38 is evidence of your cll on the move.
There is an emerging thought that some of us could benefit from earlier treatment with the new agents to stop our cll before it evolves. That wasn't true with chemo, but could be true with ibrutinib.
Its just a thought. I would maybe want the test run again to see if its just a lab anomaly. If its not, I might ask a specialist if the change in cd38 is some sign of a cll ramp up and that if early treatment might be worth considering.
Of course there are many abstracts out there on cd38, and a lot of them imply results that are later proven wrong. This particular article is every specific to cll.
And remember being unmutated does not carry the same prognosis as it used to. People with all sorts of cll are doing great on ibrutinib, particularly when used as a first treatment. jeff
Give some thought to discussing with a CLL Oncology specialist rather than a hematologist how a BMB with asperate for FISH/Flow cytometry and IGHV status may influence future treatment considerations.
CD38 and IGHV status are only a few of the actors in the CLL production. It has helped me greatly to verify my genetic profile and establish a baseline from which to measure disease progression. As Chris pointed out with the CD38, the equation changes, and I have found it to be less overwhelming by establishing definable denominators.
Also keep in mind that the viability of 2nd generation testing is on the horizon. As I understand it 2nd generation testing is more revealing and less invasive than a BMB, however at this time, it is more costly.
JM
unmutated cll patient treatment with fcr 
Unmutated Newbie
Cll diagnosis for my dad
Unmutated 
