Question in general about CLL

Hello, new here. First off I'd like to wish everyone sustained health. Trying to gather some information on CLL as a family member has been diagnosed in December 2020 after swollen lymph nodes led to blood tests showing the typical CLL blood markers. Initial white blood count was 20,000 and then shot up to 70,000 within 2 months. My question is - their last blood test before this blood test indicating CLL, was done in 2019 and obviously it was perfect levels. Can CLL advance that quick (within a year and now prompting treatment) as almost everyone I've seen say it takes years to start treatment. Is it possible to still have CLL with normal blood tests, hidden so-to-speak?

[AussieNeil Partner Administrator]

Yes and yes. Sorry I just lost a longer answer to your question, but in short, there are two possible precursors to CLL. Monoclonal B Cell Lymphocytosis (a low count of clonal B cells in the blood) and Small Lymphocytic Leukaemia, where the CLL/SLL originates in a lymph node and may be undetectable in the blood. Both can progress to CLL. The threshold is 5,000 in the USA or 5.0 most elsewhere (different reference blood volumes).

Strictly, we should measure the Absolute Lymphocyte Count (ALC), not the White Blood Cell (WBC) count, because there are 5 different white blood cell types and at low WBC counts, CLL cells may only account for a small fraction of the total WBC count. In that initial WBC count of 20,000, 40% of the count could have been healthy neutrophils! healthunlocked.com/cllsuppo...

It's possible, but unusual for the ALC to take off soon after diagnosis. The absolute count is generally not a concern and we have some members with counts around 500,000 still in watch and wait. CLL specialists monitor the ALC doubling time when the ALC climbs above 30,000, with a doubling time under 6 months an indicator that treatment may soon be needed. They then monitor patient health more closely and look for other treatment indications per this post: healthunlocked.com/cllsuppo... That's because it is possible for the ALC to level off and even reduce.

You haven't said whether the family member has had treatment recommended, so please familiarise yourself with the recognised triggers for starting treatment per the second reference. Even if treatment is soon needed, if the ALC doubling time is the only concern, there is generally still plenty of time to research for the best treatment for an individual. This community can help there. It's rapidly falling platelets or haemoglobin that more typically trigger a prompt start of treatment and even then it could be an auto-immune condition that needs treatment not the CLL/SLL. Obtaining expert care makes a huge difference in life expectancy, so using the time available to find a specialist who sees lots of people with CLL can mean a near normal life expectancy with the latest treatments. CLL/SLL is a rare (orphan) disease, so oncologists and even haematologists who don't have many CLL patients, just don't find the time to keep up with the latest treatment options, which have rapidly advanced in the last 5 years.

Neil

[Hidden in reply to AussieNeil]

Thank you very much! Very much appreciated and truly answered my inquiry. Since you seem very knowledgeable on the subject, and to answer your question - She started Gazvya (spelling) for the first time today. She feels very weak and also nauseous with one episode of vomiting. Is this common? Andbit this mostly at the beginning of treatment or will she feel it every time she gets the IV?

[AussieNeil Partner Administrator in reply to Hidden]

Nausea is one of the side effects of CLL treatment and it is usual to provide anti-nausea medication during treatment for use as needed. Sometimes it takes a bit of juggling to find one that works. Also, it is very important to take the anti-nausea medication before symptoms occur, because it's hard to get tablets down when the nausea hits. You can get tablets (Ondansetron) that dissolve on/under the tongue, but one of the advantages of having an infusion drug like Gazyva/Obinutuzumab, is that you can have an anti nausea medication injected into the IV .

Make sure she is better prepared for her following infusions. The first is generally the worst. I did fine on my subsequent Gazyva infusions after a strong infusion reaction to the first one.

Neil

[Hidden in reply to AussieNeil]

Thanks again, Neil ! You've answered everything we needed/wanted to know !