I was told in the past week by the consultant haematologist that it is unlikely that my CLL is unlikely to worsen/cause problems/progress. My blood tests show no change over two years, Lymphocyte Count is stable. I will be monitored again next September. Does this mean that I am still likely to be immunosuppressed? Do I still have to be extra cautious etc? What percentage of people diagnosed with CLL are likely to see their condition stabilise as my has? Are there identifiable causes of stabilisation?
I should have asked the consultant these questions. On the day I was just so relieved that I felt released from the burden of being 'ill'.
Over the past 30 months I have been taking fresh beetroot juice (250ml) almost daily and also cooking with turmeric almost daily.
I look forward to hearing from you.
Thank you.
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BannowBayLad
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About a third of us never need treatment, but unfortunately we are all immune compromised from when we are diagnosed. The degree of immunocompromise varies. Blood tests of our neutrophil count and immunoglobulins IgA, IgG and IgM provide an indication.
There are various tests that can give people an idea of how long they can wait before treatment, but in the UK, because these tests largely don't influence management until treatment is required, unfortunately they aren't usually done before then. One test result you may have is the immunophenotype flow cytometry test used for your diagnosis. It probably reports whether you are CD38 positive or negative. Being CD38 negative is a more favourable outcome.
There are three basic patterns recognised for how the absolute lymphocyte count changes over time, with one plateauing and perhaps dropping again. There is also around a 1% chance of spontaneous remission. That seems to be limited to IGHV mutated folk, so given you are probably IGHV mutated folk, you probably have around a 2% chance of this, given the split at diagnosis is around 50/50.
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I hope you enjoy your beetroot joice and Turmeric, as there isn't much evidence of their effectiveness. For Turmeric see: healthunlocked.com/cllsuppo...
I know that COVID has made us all more aware of immune compromise in general.
The closest thing we have to tests for immune compromise all focus on antibodies, and not on T-cells, or innate immune cells. That's because antibodies are really easy and inexpensive to measure. Some day, Next Generation Sequencing of T-cells and Innate immune cells will get cheaper.
The total immunoglobulin (aka antibody) tests only count the number of each of 3 types (IgA, IgG, and IgM) of existing antibodies, and not what disease the existing immunoglobulins recognize. It's a rule of thumb that high values on that test are generally protective.
Likewise, Flow-cytometry can give counts of CD19 B-cells, CD4 T-cells, CD8 T-cells, and NK cells, but they can't say what the CD4 and CD8 T-cells recognize.
Another test that's possible is to measure antibodies to a specific vaccine before you get the jab, and then a couple of months afterward. It's called a titre test. If you make a good response to that, it indirectly indicates good CD4 T-cell response, because those are needed to activate the B-cells that eventually make the antibodies. It's specific to the vaccine, and some researchers think that good responses on a vaccine for a bacteria does not necessarily indicate future response to a vaccine for a virus and vice versa.
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Ibrutinib, is it working for me?
All good things must come to an end
WBC and Lymphocytes are increasing 
Any insight as to CAUSES of cll besides 'age'or 'genetics'?
Newly diagnosed husband
