How sick am I ?

[markjeep51]

I have had several FLOW tests in the past, which include a measurement of the percentate of cells having CD19+ markers. This % was around 11% when first diagnosed in 2014 and was last recorded at 29% ub 2017. I am led to believe by my old oncologist that this CD19+ percentage value represents the percentage of my B-cells which are defective. Is this true ? My current oncologist at the Veterans Administration in the U.S. says that such a measurement of defective B-cells is very possible but they will not perform such a test, while I am in a w & w status and also refuse to perform anymore Flowtests. Since I am an engineer and like to understand the status & trends of my disease, it seems reasonable to me that I be told of the extent of my condition ( e.g. the size of my tumor). In my case, I do not have a solid tumor. People with solid tumors are told the size of their tumor. But I guess people with blood cancers are not allowed to know such equivalent information, at least that is the Veterans Administration's position. I must be missing something or not understanding ? Please help ?

[lankisterguy Volunteer]

Hi markjeep51,-

I am not medically trained, but an engineer like you.

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I believe that the doctors arrive at a useful measurement by using the results of a standard CBC + diff. As long as the Lymph number is over 30k, the number of "normal" lymphs will be a small fraction ( between 1.0k to 4.8k out of the 30k) and the normal lymphs will not change significantly so it is assumed constant and all the variable will be the cancer cells.

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The only time they will run a test like you suggest is when treatment is approaching MRD (Minimal Residual Disease) then the normal Lymphs greatly outnumber the CLL Lymphs.

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Len

[gardening-girl]

mark, CD 19+ cells would be all of your B lymphocytes. It is the CD19+CD5+ cells that would be the CLL cells.

[SofiaDeo]

The VA isn't likely to run those tests often since it is symptoms and lab trends that generally determine treatment. FWIW, my last FISH May 2020 showed 13q del of 21% (normal <4.4%) on one allele, and both alleles having a second type of 13q del of 77% (normal <2.3%). I also have a 17p del of TP53 on one allele of 95% (normal <9%). I haven't had a recent flow cytometry, but I was only weakly CD20 positive which is likely the reason an earlier antiCD20 Tx didn't work well on me. I was high CD52, which likely explains why antiCD52 Tx was a remarkable success.I mention all this FISH stuff as opposed to your original FLOW question, because regardless of the deletions, etc. it seems to be how we progress & react that determines treatment. Knowing I have a percentage of "normal" versus totally abnormal cells likely explains why I am able to keep a somewhat stable platelet, ANC, and RBC parameters. It a nice theoretical problem I am happy to pay out of pocket to have the info, but it really doesn't affect my treatment...other than to note over the past decade I generally become symptomatic after my WBC reaches 150K total and the %lymphocytes is over 95%.

My understanding is that abnormal CD19 in peripheral blood cells indicates bone marrow involvement with CLL cells. So this tool might be used instead of doing a bone marrow biopsy. Other than that I haven't read of any reason to do repeat flow cytometry. If you really want this testing for your own knowledge, there are a number of labs in the country that can do it, but you would have to pay for it. And note, a broad "I want to see every possible genetic abnormality" test will cost more than specifying "I want a test to look at CLL markers only".

[AussieNeil Partner Administrator in reply to SofiaDeo]

Sofia,

Dr Bill Wierda from M D Anderson wrote this piece on bone marrow biopsies and involvement in CLL/SLL for the CLL Society: cllsociety.org/2017/01/basi...

He notes, "In untreated patients with CLL, the bone marrow virtually always has leukemia cells present, including at initial diagnosis". I gather CLL generally arises in the bone marrow, whereas SLL can begin in a node, which is why it is possible to treat and possibly cure SLL if it is diagnosed before it has spread more widely.

Bone marrow CLL infiltration can be assessed by observing the drop in red blood cells/haemoglobin, platelets and neutrophils, allowing for some additional impact from an enlarged spleen filtering and possible auto-immune complications.

Mark, this pinned post covers how specialists determine how sick you are with CLL. Neither a flow cytometry or bone marrow biopsy test are needed:

healthunlocked.com/cllsuppo...

A CT scan is the best way to gain a measure of your non blood CLL tumour load, which by the way is important during treatment with Venetoclax, as the rapid CLL kill-off with this powerful drug comes with a risk of Tumour Lysis Syndrome, where organs can be overwhelmed by the rapid release of intracellular chemicals from dying CLL cells. Specialists can make an adequate assessment by checking your lymphocyte count and a physical examination of your spleen and node sizes, avoiding the X-ray radiation risk.

Neil

[Phil4-13]

Great question! Sandra🤔

[Big_Dee]

Hello markjeep51

I am also a retired engineer so don't blame it on engineers.

I had 4 FISH tests in first two years of travels with CLL. Your DNA markers % will change with disease progression. Closest determination of CLL progression is Bone Marrow Biopsy. None of these tests however will do anything to treat your CLL. Your doctors will have criteria to determine when you need treatment. Blessings.