My haematologist has given me no information about my CLL since he told me I have it three years ago.
Other than the WBC (white blood cell count), [which has been jumping up in large increments since February 2017], I do not know which other markers I should be looking for which are indicative of the progress of my CLL.
Could someone tell me which markers I should be looking out for, and not use acronyms, since it is not always easy to decipher them. Your help would be appreciated, since finding out myself seems to be the only way I'll find out anything about my own illness!
I'm on Fexofenadine and Hydroxyzine for intense generalised itching, and for the moment, they seem to be dampening it. Has anyone else experienced generalised itching and could you suggest ways of combatting it? I use barrier emollient creams also, alongside Nasobec steroid spray for the rhinitis and Cromoglicate drops for the gritty eyes. They provide adequate relief, thankfully
My active surveillance appointments have been increased to 3 monthly, instead of the former 12 monthly and it's looking more and more like chemo may be started sometime in the medium term, if the WBC keeps on heading north.
Otherwise, apart from the itching, I feel reasonably well!
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Antaine
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This document from the Leukaemia and Lymphoma Society really is worth reading because it will give you all the information and more on CLL, the blood tests, what they mean and treatment discussions.
One of the key indicators of progressing CLL is to be found in your ALC which is the absolute lymphocyte count. Look at the absolute level not the percentage. A normal lymphocyte count is 3.8 but it’s not unusual for CLL’ers to progress to 100 (100,000) plus and still not require treatment if other indicators are sound. It’s the doubling time within a 6 month period that triggers treatment discussions but usually only once they are over 30 (30,000). This will explain what to look for on your blood tests because the WBC in itself isn’t terribly helpful;
Ask your haematologist for a copy of your results and make comparisons or ask for advice on here as to what they mean.
Other key indicators are your Red Blood Cell (RBC) counts and haemoglobin because dropping levels affect the oxygen carrying capacity and lead to breathless and possible anaemia. Platelet levels are also very important because our platelets basically stop bleeding. Impaired platelets are the reason CLL’ers suffer bruising. You’ll realise this is a simplistic explanation but hope it helps. In terms of treatment decisions, there are a number of factors to be taken into consideration including how you’re feeling, side effects, levels of fatigue, possible constant infections etc. It’s clear you’re not receiving a great deal of information from your haematologist but rising or fluctuating WBC isn’t a good enough stand alone reason to start treatment. Consider a second opinion from a CLL specialist would be my advice.
These are the authoritative, accepted reasons for starting treatment;
‘Active disease should be clearly documented for protocol therapy. At least one of the following criteria should be met:
1. Evidence of progressive marrow failure as manifested by the development of, or worsening of, anemia and/or thrombocytopenia
2. Massive (ie, at least 6 cm below the left costal margin) or progressive or symptomatic splenomegaly
3. Massive nodes (ie, at least 10 cm in longest diameter) or progressive or symptomatic lymphadenopathy
4. Progressive lymphocytosis with an increase of more than 50% over a 2-month period or lymphocyte doubling time (LDT) of less than 6 months. LDT can be obtained by linear regression extrapolation of absolute lymphocyte counts obtained at intervals of 2 weeks over an observation period of 2 to 3 months. In patients with initial blood lymphocyte counts of less than 30 × 109/L (30 000/μL), LDT should not be used as a single parameter to define a treatment indication. In addition, factors contributing to lymphocytosis or lymphadenopathy other than CLL (eg, infections) should be excluded.
5. Autoimmune anemia and/or thrombocytopenia that is poorly responsive to corticosteroids or other standard therapy (see section 10.2).
6. Constitutional symptoms, defined as any one or more of the following disease-related symptoms or signs:
1. Unintentional weight loss of 10% or more within the previous 6 months;
2. significant fatigue (ie, ECOG PS 2 or worse; inability to work or perform usual activities);
3. fevers higher than 100.5°F or 38.0°C for 2 or more weeks without other evidence of infection; or
4. night sweats for more than 1 month without evidence of infection. ‘
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An interesting paper on diet and CLL progression 
Stress Exacerbates CLL And Speeds Up Its Progression
Time-to-progression after front-line FCR for CLL: a retrospective, multicohort study
Did anyone have MGUS progress into CLL, and after treatment for CLL, did your MGUS improve or no longer exist?
Anxiety CLL/recently diagnosed/cd38
