very high WBC

[Vivekannd]

Hi All, I’m an Aussie, 48 years old with del13q14. and I’m wait and watch since 10 years.. My wbc was around 100, 000 few months back and now 201000 from Oct onwards. I had painful nodes which went down just before the high count. My haematologist thought it might be due to some infection . Did another blood test last week via my GP and it’s still around 201000 though my nodes are now back to how they were since last 6 months back and I’m feeling ok. No tiredness etc . Though my haemoglobin is now at 129 . Is it time to consider treatment due to high wbc burden? Or does the wbc take time to come down after infection?

[Skyshark]

WBC and ALC are not reason to start treatment. The rate of doubling of ALC has to be monitored.

nature.com/articles/s41408-...

Is "a few months back" over 6 months ago?

There are people untreated with ALC > 700,000.

[Vivekannd in reply to Skyshark]

Thanks for your reply, skylark

please find the details below;

March: 131000

May: 138000

Had painful nodes in early September which subsided within 2 weeks

Sept:210000

Nov: 213000

[Skyshark in reply to Vivekannd]

Just going on WBC.

May > Sept the rise is 52% over 4 months. Doesn't meet the >50% in 2 months criteria.

The 6 month results March > Sept has a 60% rise. Doesn't meet the doubled in 6 months criteria.

[Guffy]

G'day Vivekannd. I'm an Aussie too, of the South variety! 13q too, watch and wait for 6 years. I expect my first treatment in one or two months. Ours is a weird disease, and rarely seems to behave in expected ways. My WBC is about 79. Yours is 201, and I'm going to be treated. Go figure! My ALC has been doubling, and that's why the haemo is preparing me. Is yours doubling? If not, painful symptoms can be a trigger for treatment. But you say the nodes have subsided. I'd be having a good long chat with your haemo. If he hasn't been talking about treatment, I'd say you're OK.

Good luck with everything, and keep us posted!

Aussie! Aussie! Aussie! Oi oi oi!

[Vivekannd in reply to Guffy]

Gday Guffy and thanks for your kind note. Agreed, I’ll let people smarter than me take the decision . Plus we have the best public hospital system, so not worried 🙏🇦🇺🇦🇺🦘🦘🇦🇺🇦🇺

[Guffy in reply to Vivekannd]

Nah worries, mate!😉

[Vivekannd in reply to Guffy]

theoretically yes since it rose form 100s to 200s

[MisfitK]

Since you doubled ALC in 6 months, and are at a really high ALC, yes, you have hit a marker for treatment.

That said, just b/c you hit a marker doesn't mean you have to start NOW. But you should be getting your ducks in a row and figuring out what treatment you will want, how you'll fit it in to your life plan, and how you'll pay for it (if it's an issue) in the next 3-12 months b/c treatment is coming pretty soon, if not now.

I have espoused the Goldilocks theory for when to start treatment a lot here - you don't want to be too early, but you REALLY don't want to be too late. When you start, you're very likely gonna get huge blood value swings over the 1st few weeks/months. If you start in a really bad place health wise, those swings are gonna be hard to handle. So, if you have to err, being a touch early on treatment is not the worst thing.

PS - If you lock your post to this community (use the edit function for your post and select for this community), you will likely get more answers.

[bennevisplace]

I would endorse Skyshark: it's Absolute Lymphocyte Count (ALC) you and your doc should be monitoring, not WBC. It will take at least one more blood test to ascertain whether the recent surge in WBC represents an ALC doubling time equal to or shorter than 3 months, one indicator for treatment.

Your specialist will also be looking at the counts and the rate of change in your blood haemoglobin and platelets, as these can be independent indicators for treatment.

[DanceonaVolcano in reply to bennevisplace]

Doubling is an odd measure as the higher the baseline the harder it is to double. I’m sat with an ALC now at 200k … it has steadily risen throughout my 3 and a half years. Doubling 200k will take some doing!

My consultant is tracking falling haemoglobin

[bennevisplace in reply to DanceonaVolcano]

Hi.

Yes, that's what one might expect intuitively. But ALC doubling time, at the higher values, is predominantly down to the CLL clonal proliferation rate. In patients with slow-growing CLL that rate may be fairly constant, with the odd blip, over a period of years, yet in the same period the ALC count will resemble Fig 4a in pmc.ncbi.nlm.nih.gov/articl... with a fixed doubling time all along the curve - it's how the maths works.

Patients with a more aggressive form of CLL, or with a lot of lymph node/ spleen involvement, might well show a very different ALC curve.

I think that the reason we don't see many patients double their count after 200 or so (a few go up to 800) is that other factors like falling Hb or platelets, or worsening symptoms, intervene and dictate that treatment commences.

Best wishes.

[DanceonaVolcano in reply to bennevisplace]

Agreed. It’ll be falling haemoglobin that tips me into treatment I expect, though it has settled at around 115 for the last 6 months. I’ve given up second guessing 😄

[Rico49]

Good morning. I was in watch & wait for 7 years. Moffit is a major Cancer Center in US. The main thing they watched on me was hemoglobin and platelets.When my hgb reached 10 , platelets reached 70 and my bone marrow infiltration exceeded 90%, we started treatment.

we did V&O which lasts 12 months.I ended treatment in July 2024 and have been getting monthly blood test since inluding one this AM.

so far my blood is better than it has been in 15 years. Good luck.

[lorna222]

Hi Vivekananda,Reading responses,I don't see what my Oncologist asked me 5 years ago which was how do You feel?

Sure the numbers were increasing in my situation as the CLL progressed and I was feeling ill a lot of the time. For me, it was time to start treatment. Best of luck.

Lorna

[Vivekannd in reply to lorna222]

Thanks for your response. I’m having a 8 week recurring appointments with my haematologist. Just trying to preempt what might happen during my next visit

[PennyLane2024]

I see one of too CLL specialists in US. My WBC and lymphs went from 60 in February to 160 in May. I was admitted to hospital and started V and O due to tumor lysis risk. You need to find a CLL specialist very soon to advise you.

[Vivekannd in reply to PennyLane2024]

Thanks Penny. I’m being checked one r every two months by my haematologist. He told me to be prepared for treatment, but also mentioned that i haven’t reached the point yet. Probably being 49 years old allows him to be a bit relaxed with my treatment

[PennyLane2024]

I am 55. Where do you live? A hematologist is not always a CLL specialist. My hematologist told me that I had 3-5 years before treatment. Luckily, I got second opinion from CLL specialist who saved my life.

[Vivekannd in reply to PennyLane2024]

I live in Melbourne , Australia and my Haematologist is a CLL specialist though. Thanks for reiterating it. The only problem ia that my count is bad, but I’m feeling ok ( no night sweats, no massive tiredness, the lymph nodes aren’t too large), so a bit confused. I might push for Venetoclax and obinutuzumab since I want to work and I have 2 kids and dont want to go to hospital frequently.

[PennyLane2024 in reply to Vivekannd]

I have not missed a workout at gym or a bike ride since my diagnosis in January. I have felt good most days. And I was hospitalized suddenly in May because my WBC was 170 and my RBC was crashing. If your lymphocytes doubled in six months and your RBC is low, then treatment should be strongly considered. There are many excellent treatments including V and O. Starting treatment early is much better than starting it late.

[Vivekannd in reply to PennyLane2024]

Thanks Penny. I’ve a review around 10 December. I’ll push for the same then🙏

[AussieNeil Partner Administrator in reply to Vivekannd]

Vivekannd, Melbourne is the centre of excellence for CLL management in Australia. Not only do we have one of the iwCLL guidelines authors based in Melbourne, we also have the next editor-in-chief of Blood, the American Society of Haematologist's flagship journal, plus two haematologists who have worked with the M D Anderson CLL team, one of the top CLL research groups in the world.

One of those M D Anderson trained CLL specialists, who also initiated the establishment of the clinical trials that eventually resulted in the approval of zanubrutinib, responded to someone worried about their rapidly rising lymphocyte count, by asking "how do you feel"? He saw a fast rising lymphocyte count as a sign for closer observation for other signs that CLL was on the move and needing treatment. So should a CLL specialist in Melbourne deem that treatment is necessary, they’ll have some excellent options available to you, likely through access to further clinical trials of even better treatment options than we have now, should that be of interest to you.

Neil

[Vivekannd in reply to AussieNeil]

Thanks AussieNeil

I remember reading that venetoclax too is an Aussie invention and I’m being watched at Austin by a very kind haematologist and also by a wonderful GP🙏. Thanks for your kind words and I’m aware I’m in good hands . Just wanted to preempt what might happen in my next visit. But my haematologist was also mentioning clinical trials as first option if and when I need to get treated. I also told him I want to be as productive as possible during treatment without too much hospital stays

[PennyLane2024]

My numbers on Friday. Month 6 of V+O.

Numbers

[Skyshark in reply to PennyLane2024]

V+O and Obinutuzumab in particular has a very rapid effect on blood results. As far as blood results go some doctors will say it's in remission from the first week but it's still hiding in the lymph nodes and marrow.

I'm doing well as well, bit of a blip from the 2 week gap between 3rd and 4th Obinutuzumab