Hi everyone. I was diagnosed with CLL 7 months ago, regular blood tests have seen my WCC rising. Not quite doubled in 6 months, which I believe is an indication for starting treatment. Latest appointment with haematology showed an increase, but not as much as before. Is there anyone else who is living with rising wcc, but no treatment yet and no other symptoms incidentally. I have been warned when treatment might start and I am very anxious. I live alone and fear treatment that might make me feel unwell. Sorry to sound pathetic but I have been well on the whole, before this diagnosis. I am 76 btw
Carol
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Plum4
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It’s your ALC (absolute lymphocyte count) not WBC (white blood count) that is tracked for signs of doubling over a 6 month period and then only after it’s over 30. Patterns are observed as well as changes in other labs such as platelets and haemoglobin. How you are feeling is an important indicator.
Please don’t be afraid about the impact of treatment. There’s no reason why it should make you unwell or unable to care for yourself particularly if your doctor opts for oral meds.
Plum4, I agree with Newdawn. How you feel seems to be a major factor in deciding when to start. I saw a webinar video on YouTube where Dr. Kanti Rai was on a panel and was asked to comment on a case study similar to what you describe. Two other doctors on the panel recommended a treatment option and Dr. Rai said, 'if the patient is feeling well I do nothing '.
I have some enlarged nodes, but generally feel very well. At my last appointment I asked the specialist when do you think I'll need treatment. She said my blood work looks good and as long as the nodes don't grow large and bothersome and I feel well we do nothing since all treatments have side effects that can be worse, or more bothersome, than the disease.
This gives quite a detailed description of the criteria for starting treatment. Some may be repeated to give more detail.
Please don’t feel rushed into treatment and if necessary, seek a second opinion.
‘B Symptoms (there are no A symptoms)
Weight loss >10% of body weight in previous 6 months
Severe fatigue (ambulatory and capable of all self-care but unable to carry out any work activities
Fevers >38°C for at least 2 weeks without evidence of infection
Drenching night sweats for more than a month without evidence of infection
Evidence of progressive bone marrow failure manifest by low blood counts (cytopenias) including anemia (low red blood cells) or thrombocytopenia (low platelets)
Massive or symptomatic splenomegaly (enlarged spleen)
Massive lymph nodes or clusters of nodes (>10 cm) or progressive or symptomatic lymphadenopathy (enlarged lymph nodes)
Autoimmune Hemolytic Anemia (AIHA where the body attacks its own red cells) and/or Immune Thrombocytopenic Purpura (ITP where the body attacks its own platelets) that is poorly responsive to steroids or other standard therapy
Rising ALC with an increase of more than 50% over a 2-month period or a lymphocyte doubling time (LDT) <6 months. If ALC is <30,000, LDT should not be used as the only criterion for beginning treatment.
The last indication for treatment, namely a rapidly rising ALC is controversial.
Please note there is no absolute level of ALC that demands treatments.’
Active disease should be clearly documented to initiate therapy. At least 1 of the following criteria should be met.
Evidence of progressive marrow failure as manifested by the development of, or worsening of, anemia and/or thrombocytopenia. Cutoff levels of Hb <10 g/dL or platelet counts <100 × 109/L are generally regarded as indication for treatment. However, in some patients, platelet counts <100 × 109/L may remain stable over a long period; this situation does not automatically require therapeutic intervention.
Massive (ie, ≥6 cm below the left costal margin) or progressive or symptomatic splenomegaly.
Massive nodes (ie, ≥10 cm in longest diameter) or progressive or symptomatic lymphadenopathy.
Progressive lymphocytosis with an increase of ≥50% over a 2-month period, or lymphocyte doubling time (LDT) <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; patients with initial blood lymphocyte counts <30 × 109/L may require a longer observation period to determine the LDT. Factors contributing to lymphocytosis other than CLL (eg, infections, steroid administration) should be excluded.
Autoimmune complications including anemia or thrombocytopenia poorly responsive to corticosteroids.
Symptomatic or functional extranodal involvement (eg, skin, kidney, lung, spine).
Disease-related symptoms as defined by any of the following:
Unintentional weight loss ≥10% within the previous 6 months.
Significant fatigue (ie, ECOG performance scale 2 or worse; cannot work or unable to perform usual activities).
Fevers ≥100.5°F or 38.0°C for 2 or more weeks without evidence of infection.
Night sweats for ≥1 month without evidence of infection.
That your WBC is doubling and it is significant in treatment times is a mostly outdated metric. Go with the extensive list of criteria Newdawn highlighted.
With regard to your feelings, don't discount them unless they are a motivator to take a course that won't help you. One does not have to be at treatment before it is acceptable to be afraid, sad, or any other feeling.
Now, if it makes you perseverate to the point that you freeze up and not enjoy the enjoyable parts of life, well yes, get help to balance your feelings.
Lastly, your word choice of pathetic, carries a good amount of subjective implications. You are not pathetic as in inadequate; and if your illness (makes) you, or others sad, so be it. You are not irrational nor are you acting in a harmful way toward others. We must all try to stop this compulsion to make sure our feeling line up with a specific arbitrary standard, we feel what we feel because we feel, it's what we do about it that counts.
We're here for you, as we are here for each other. 🙂💐
that’s the standard progress of CLL. Watch out for weight loss and infections. Doubling alone does not always define treatment, it’s a mix of symptoms.
I was diagnosed in 2018 and my WBC did rise so that I was told I would be treated in two years. However participating in a University of Surrey study on the relationship between exercise and CLL (David Bartlett) has meant that my WBC has stabilised and that now my haematologist is saying ‘I don’t know when I will treat you’. If you can’t take part in the study follow the NHS physical activity guidelines and you will have a good chance of stabilising the condition at least for a few years.
also I would say that contributing in this way to stabilising your condition has a massive impact on morale. It gives you hope! But it’s hard work as well!
Hi Carol. Please don't feel awkward about asking questions. I'm still asking. In fact, I think we all should. I think I may be in a similar situation. My WBC is 77. MY ALC is 73.3. It has doubled in 6 months. For two months the hematologist has been telling me to prepare for treatment. He wants me to reach a WBC of at least 90 before he begins. That could be in a matter of weeks, unless the WBC levels out. The weird thing is, my symptoms are not serious. There's a couple of swollen nodes in my neck. The rest are internal. The spleen is growing, but not uncomfortably, and I have not had a night sweat.
It is the uncertainty that is so unnerving. But doc says the best outcome will be achieved if we wait. He assures me that the treatment itself, though not exactly a walk in the park, will be straightforward, simple, and will achieve positive results.
Like others have said, try not to be anxious. It's hard, I know. For now, keep doing the things that make you happy. Every day will take of itself. And when the time comes, CLL is a cancer that can be managed well.
just FYI, I felt pretty good and my count was 280 when I started to feel a little unwell. Now on Acala & Obin and my bloods are pretty normal. Sometimes people with issues are the ones posting here, but there are a large number of people where responses to the new drugs are great! And the future looks bright for new drugs too! All the best with your CLL.
my WCC doubled since my diagnosis in 2019 but I haven’t had any symptoms either. My dr says it’s normal & it’ll fluctuate a lot but as long as I don’t have symptoms I’m good to go till the next follow up.
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New to the CLL site
I need to calm down.
CLL, Trisomy12, unmutated, NOTCH1 - NOT SURE WHERE TO GO - WHAT TO DO
Is anything known about time to first treatment after diagnosis?
