I was diagnosed in 2014, after quiet W & W 7 years, almost forget I am a CLL patient.
In the last month I suddenly feel very tired and lymph nodes grew. There was a big change in my blood test report (lymphocyte count increase) in one month. Just wondering if tiredness/ growing lymph nodes/ blood test result are supposed to change gradually or it can change suddenly?
Only factor I can think is I got Covid Vaccine 4 week ago before ultra sound and had blood test one day after second dose, did anyone happen to have experience same thing or have tiredness lasting 5 weeks after Covid Vaccine?
Is lymphocyte change or lymph node size ~7cm longest dimension close to point of starting treatment based on your experience?
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Sheng
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Sheng, there are guidelines for when we treat. I suspect they call them guidelines, and not rules, to give our doctors flexibility in deciding what path we should take. I think it fair to say the more boxes one checks on the guidelines, the more likely treatment time is at hand
If your lymphocytes have doubled within six months, or increased more than 50% in two months, that could be an indication to treat now.
Massive nodes greater than 10 cm can be an indication for treatment. A more somewhat vague guideline that might meet your situation is progressive or symptomatic lymphadenopathy. I linked to the iwcll guidelines to treat below for you, see the indications for treatment section.
They are just guidelines and you should discuss with your doctor. Two of the most important decisions we make as a cll patient is when to treat and what treatment to choose. These are both such important decisions that getting a second opinion on both is something to be considered.
Indications for treatment
Primary treatment decisions
Criteria for initiating treatment may vary depending on whether the patient is treated in a clinical trial (Table 2). In general practice, patients with asymptomatic early-stage disease (Rai 0, Binet A), should be monitored without therapy unless they have evidence of disease progression or disease-related symptoms. Several studies have shown that treating patients with early-stage disease does not result in a survival benefit87-90 ; therefore, an early-intervention therapy with antileukemia drugs, including signaling inhibitors or BCL2 antagonists, alone or in combination with monoclonal antibodies, currently is not indicated.
Although patients with intermediate-risk (stages I and II) and high-risk (stages III and IV) disease according to the modified Rai classification or at Binet stage B or C usually benefit from the initiation of treatment, some of these patients (in particular, Rai intermediate risk or Binet stage B) can be monitored without therapy until they have evidence for progressive or symptomatic disease (summarized as “active disease”).
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.
I had an adverse reaction to the Moderna vaccine similar to yours. My nodes grew. My bloods got worse. I got more fatigued even 4 months afterward. It could all be coincidences but who knows? Now I am forced to contemplate starting treatment.
No one knows for sure. Unless you have hit a few of the triggers for treatment mentioned by Cajunjeff already I would wait for another test to see if your nodes, bloods, and symptoms continue to trend poorly. What does your doctor say?
I started Ibrutinib plus IVIG treatment just over a month ago. I was on W+W for 12 years. I was always tired. I had enlarged lymph nodes in my groin for about 9 years. I also had an enlarged spleen for about 3 years. I was increasingly getting infections and associated night sweats. However, the trigger was when my lymphocytes went from 60 to 110 in 3 months, my immunity levels dropped rapidly and I was losing some weight. As I was getting the pre-treatment tests (CT scan, bone marrow biopsy and PET scan) I got pneumonia (non-COVID), so had a round of antibiotics prior to starting the Ibrutinib. So while there are guidelines, the trick is to time the start of any treatment, if required, before you get really sick. Hope that helps.
Sheng, just checked and my lymphocytes are measured as 10*9/L. Not sure how that compares to E9/L (i.e. is it 10x?). The reference (normal) range for me 1 to 4 10*9/L. The more knowledgeable folks on this forum will know.
My story is almost identical- diagnosed in 2013, steadily climbing WBC etc- but no big lymph nodes- then a couple of weeks after Pfizer jab I had my 6 monthly check with my consultant and the nodes in my jabbed arm were enlarged. As a precaution I had a CT scan 4 weeks later and was back to “ normal” .So false alarm in my case and hopefully suggests the jab provoked some sort of immune response.
Hi Sheng, interesting that you should reference the Covid vaccine.
I was newly diagnosed last week after a UTI & very bloody urine output prompted a full blood count.
I had the first AstraZeneca jab about nine weeks ago and three weeks later I noticed for the first time a slightly enlarged node on my neck. At the time I merely dismissed it as a bit of an infection and forgot about it.
I’m beginning to wonder if the jab elevated my lymphocyte count even further and thus made me more likely to succumb to the UTI a few weeks later.
You’re not the first person on here that has made a similar association.P.
sorry for you join this club, all good wish for you stay in W& W forever long.thanks for your input. looks like all Vaccine will work on our condition.
Our lymphocyte count includes a range of different lymphocyte types. Unless we have the SLL variant of CLL/SLL, where CLL cells are hard to find in our blood, our lymphocyte count includes mostly CLL cells along with healthy B lymphocytes, CD4 and CD8 (helper and cytotoxic respectively) T lymphocytes, plus Natural Killer (NK) lymphocytes. Unless our CLL is sensitive to something in the vaccine, which I suggest is highly unlikely, any lymphocyte increase is probably a healthy response to the vaccine. Swelling nodes are a normal response to an infection or vaccination. It is evidence that macrophages in our immune system have identified foreign substances and taken them to germinal centres in our nodes for healthy B and helper T cells to develop antibody producing mature B lymphocytes (plasma cells). It's the multiplication of these lymphocytes that causes the temporary swelling of our nodes.
CLL cells in our blood are in their dormant phase. It's when they are active in our nodes that they pour out messenger proteins (cytokines and chemokines) that suppress our immune system.
Thank Neil, as ever, a fount of useful knowledge I was completely ignorant of such detail. My second AstraZeneca vaccine on Friday, so now appropriately informed!
Numbers more than doubled after Moderna vaccines. Doc acted not that concerned, but did schedule my next exam 4 months after rather than 6 months. By the way, might want to get blood test check for possible epstein barr reactivation -- which has same basic symptoms as CLL and can come on suddenly with ENORMOUS fatigue. That was what I had first, before CLL diagnosis, and I still get it intermittently.
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