WBC 18 to 61.56- how about WBC 22 to 3.6

[Rico49]

Just read the interesting post about WBC 18 to 61.56. Many have said their wbc went up when they first started Acalabrutinib. Mine did the opposite. I went from 22 to 3.6 in a month and my ANC went to .14. My treatment was stopped till my anc improves. Any comments or similar experiences are appreciated. Thanks

[SofiaDeo]

BTKi's generally work slowly, but some people's CLL variant are very sensitive. You appear to be sensitive to the medication. Especially with your stem cells also dropping your ANC.

[Rico49 in reply to SofiaDeo]

Thanks for commenting. So do you think that is a good or a bad thing? Different for sure.I see my oncologist on Jan 12th. We'll see what he says.

[SofiaDeo in reply to Rico49]

Well, it might be a double edged sword. Good in that you are sensitive and killing CLL fast, bad if you are so sensitive things like neutrophils are getting affected early on. You may find out you need to switch *something*, if your neutrophils keep dropping excessively. I imagine you will get "rechallenged" with the med again after your neutrophils come up. Some people have their neutrophils return to normal and stay OK, some don't. No way to know ahead of time. After mmm 3 or so tries, if neuts don't stay normal, *something* gets done, change of med or dose adjustment.

[Rico49 in reply to SofiaDeo]

👍thank you. You have confirmed my thinking.Happy Holidays to you!

[Big_Dee]

Hello Rico49

We CLLers are all different. It depends on type of treatment as well. My first treatment was B+R, which dropped my WBC from 197K+ to 6.2K in first month. Second V&O treatment dropped WBC from 42K to 4.3k in one week. you can never tell where those little CLL cell are lurking.

[Rico49 in reply to Big_Dee]

Thanks for your reply. did your ANC tank also or were you able to continue treatment?

[Big_Dee in reply to Rico49]

Hello in both cases I have been able to continue treatment. Blessings.

[PACWOMAN]

I recently started calquence, my wbc was a very high 759 thousand. I had a blood test after three weeks, and it was an unbelievable one million and twenty six thousand! Well I always wanted to be a millionaress, would have preferred money to wbc though! Wonder if I'm the highest scorer ever, fame at last!

Strangely, I am feeling fine, and always have been, apart from anaemia caused by cll. I have never had any symptoms of anything whatsoever, and not even a cold or tummy bug this century. I am over seventy, but very fit and active.

[Rico49 in reply to PACWOMAN]

Thank you. Good luck with calquence. I was on it for only a month after my ANC tanked.

yikes- a million 26,000. you might qualify for Ripley's believe it or not!

[PACWOMAN in reply to Rico49]

Thanks, good luck with your treatment too. I had another blood test today, may lose my millionaire status!

[AussieNeil Administrator in reply to PACWOMAN]

Congratulations on achieving our community record WBC! While your record will probably stand for a while in our community, it's considerably shy of the record I know of, a stunning 1,400,000! ! As you've noted, high lymphocyte counts and hence high WBCs aren't a health concern with CLL, as I explained in this post: healthunlocked.com/cllsuppo...

If you want to take the crown, starting on a BTKi inhibitor might do it, but I'd still be nervous about entering unchartered territory .

Neil

[PACWOMAN in reply to AussieNeil]

Hi Neil, calquence is the brand name for acalabrutrinib, maybe only in the UK. I started it around 6 weeks ago, and the blood test showing over a million wbc was 3 weeks ago. It also showed high potassium of 6.7, and 0 neurophils. I was told to go to A&E., but felt fine and ignored the advice. Did another test 2 days later and my neutrophils were double the average and potassium 4.5! Is this really possible, or are the lab workers conspiring to give me a nervous breakdown? No one bothered to tell me for over two weeks that I wasn't going to drop dead of potassium poisoning, wish they realised how much stress this causes. Luckily I'd been through all this before, so just listened to what my body was telling me.

[AussieNeil Administrator in reply to PACWOMAN]

Sorry for my delayed reply, but you are in poorly charted territory. (I also missed that you were on Calquence/acalabrutinib, which obviously helped you achieve that still impressive WBC/ACL record for our community.)

My concern for you is that you shouldn't have ignored the advice to go to A&E, because you don't get warning signs that you are neutropenic, even when severely so. I know this from personal experience. It's like driving a car, not knowing that the air bags don't work or that the seat belt will fail in an accident. Confusingly, you can get some warning signs of high potassium, which you can also get from your CLL or CLL treatment per: healthline.com/health/high-... I appreciate that going to A&E, particularly with the NHS at breaking point, isn't an attractive option, but it's the right place to be if your health comes under threat from high potassium.

I suspect both your reported high potassium and neutrophil count of zero were due to your high WBC/lymphocyte count, but for your safety, that should have been confirmed by a repeated, very carefully taken blood test, which should have resulted in a manual inspection and count of your white blood cells. With such an extremely high WBC, dominated by that most impressive lymphocyte (CLL) count, a healthy neutrophil count could have been hidden in all the CLL cells. Typically, there are roughly twice as many neutrophils as lymphocytes in your blood. With a lymphocyte count about 500 times the normal amount as yours was, the sample of white blood cells analysed could well miss capturing any of those neutrophils. Also, CLL cells break easily, releasing the potassium from inside the cells into the blood plasma, giving an artificially high potassium count when that happens. Carefully retaking a blood sample would probably have reported a healthy potassium level.

Neil

[PACWOMAN in reply to AussieNeil]

Thank you so much for your explanation of why my neutrophils and potassium levels are so up and down Neil, it makes sense, but still causes unnecessary stress. Wish the doctors had explained that to me. I have lost my millionairess status after my last blood test, wbc back to 750, normal for me! Hopefully it will continue to decrease over time. Everything else was OK, so glad I didn't go to hospital as I might have caught something due to no fresh air or ventilation in such crowded places, and been ill at Christmas.

I hope you and everyone else can enjoy Christmas too, and stays well.

I'd like to thank you for your help and dedication to this site, which must take an awful lot of your time. I know doctors are so busy they don't have time to explain everything, so I really appreciate your replies.

[Rico49 in reply to AussieNeil]

Thanks Neil for your vast amount of knowledge. Happy holidays!

[Jillinill]

Rico49, It's interesting that your acal was started with a relatively low ALC of 22. May I ask what prompted starting acal at such a low ALC? As you now have quickly dropped down to normal ALC 3.6 and very low neuts 0.14, a dosage drop from 2 to 1 cap daily might help you to recover neuts to a normal level while continuing to put pressure on remaining CLL cells. It could be premature to continue to hold acal at this point, but that is standard protocol following grade 3+ adverse events such as neutropenia.

As BTKi lowers ALC near normal, there are more off-target effects on other blood cells. Dropping BTKi dosage lowers BTKi concentration in the blood. Instead of killing off high titres of B-cells initially from blood/nodes/spleen, more BTKi is now available for off-target effects on platelets and neutrophils.

As my ALC fell from a high over 200 to around 20, lowering dosage to 1 cap for both ibru and acal worked well for me. I would discuss options with your specialist to either end your hold on acal with a lowered dose to 1 cap daily, or alternatively starting on a granulocyte colony stimulating factor injection to increase neut production. My bone marrow was too impacted with CLL proginator cells for a G-CSF like filgrastim/Neupogen to increase neuts.

If you're interested in my approximate numbers (I don't have access to my exact test numbers right now) and my full reasons for dropping dose, read on.

I was on ibrutinib for 24 months, and stopped at sustained normal ALC 3 due to brain fog and tiredness, then a 28 month remission followed by 18 months to date of acalabrutinib. Both were reduced to 1 cap as I hit low ALC.

I started both ibrutinib and acal at ALC over 150. Both cases, I only had minimal lymphocytosis or rise in ALC the first 1-3 days following start of both BTKi's and a rapid drop to normal ALC in 4 & 5 months, respectively.

Most likely this is because I don't have large lymph nodes which would release more B-cells immediately into the blood especially on first few days of treatment. I did have an enlarged spleen, and as both BTKi's released killed B-cells, my ALC rose from ~150 to over 200, and then rapidly fell due to rapid clearance of those B-cells by both BTKi's.

Unlike CLL cells in blood and lymph nodes, BTKi's can take 5 years to clear CLL progenitor cells from the bone marrow, which for me was 90% impacted before ibrutinib.

18 months after starting acal, I now have had subnormal WBC, ALC and platelets for the past 6 months, but I'm still at MRD+ over 10%, so bone marrow is still releasing CLL cells.

Note I'm at a low body weight and these BTKi's are a bit to high dose for me, so dosage reduction was always highly likely as I dropped closer to normal ALC. As both BTKi's lowered my ALC near 20 range, I've had increased off-target effects on other blood cells (neutrophils and platelets).

Just prior to acal, my neuts were at 0 after monthly UTIs. Several months after starting acal, with neuts stubbornly stuck at 0, I requested a drop from 2 to 1 capsule acal daily. Amazingly, my neuts rose to normal 2.3 very quickly, and have stayed normal despite a recent challenge from another rough UTI. Lowering my BTKi dose immediately relieved the off-target effects of restriction on neuts, and they recovered.

I hope that you are able to find a solution with your specialist to restore your neutrophil levels to normal.

[Rico49 in reply to Jillinill]

Thank you Jill. Very informative and many similarities.

First why did I start treatment? Has been a strange year. I have been on watch and wait since 2016 but no one ever told me that's what I was on.

I saw my Oncologist in Nov of 2021 and he said I'll see you again next year. He said "we may have to treat you in a year or 2.

In March I woke up with numbness from my waste down and tingling hands. Couldn't get into neurologist till June. Long story short after mri's and spinal tap they found nothing bad except for a lesion on my cervical spine. Just got back from Mayo Clinic and 4 days of testing this month. Lesion is gone with no treatment. Found CLL in my spinal fluid- very rare <1%. Meeting with neurooncologist on 12/27.

Back to why. In July I got covid. Turned into bronchitis . I asked for a chest x-ray and it showed potential issues with lymph nodes. Ct scan showed lymph nodes lit up all over but small. Largest was about 2.5 cm. This scarred me.

This occurred while we were away for the summer in North Carolina. They had a cancer center with a hematologist/oncologist on staff so I went in for a check-up in August. If I knew then what I know now about watch and wait I would have flown home.

Anyway- this Dr ran my blood work . MY wbc was only 22 . He was very concerned that my hemoglobin was 10.7. My plat were 112. He obviously didn't know anything about watch and wait.

He scared me . He ordered a bone marrow biopsy and pet scan. However, he prescribed acal before we even did the tests. I didn't want to start till the results came back in Sept.

Results weren't good : 80% in bone marrow, trisomy 12 -85%, unmutated ivhg(sp?) and some other markers. So this all scared me and I remembered my Dr saying we may have to start treatment in a year or 2 and it had been 10 months so... My Dr in Napes said he would accept what this doctor said and we could adjust later if need be.

So I started Acal on Oct 12 and only took one month as I had appointments scheduled with my Oncologist in Naples and Dr Pinilla at Moffett Cancer Center in Tampa. After talking to both my Dr and Dr Pinilla , they would not have started me on anything. They stopped my treatment immediately. I go in Jan 12th to talk options.

The cll in the spinal fluid adds another dimension. Anxious to talk to Mayo Neuro oncoligist on the 27th. This gets really complicated because I had cancer in 1996 where I was treated with cisplatin (before they knew it caused neurotoxicity and leukemias in 20-25 years) along with heavy radiation and 5fu.. I have tracked my blood for 25 years and watched it gradually deteriorate so the CLL diagnosis wasn't a surprise- the spinal fluid involement was a surprise. So my neuro problem could be the CLL or DNA damage from the cisplatin just showing up. After 9 months, 7 mri's and two lumbar punctures and we don't know yet???

The Dr in NC never gave me any options . He sold Acal and sounded great- only a pill twice a day. If I had been on this site back then I would never have started. My bad.

Well thanks for listening. As an old friend of mine used to say, I have said more than I know.

I wonder now that Acal is a tablet and not a capsule if I could cut in half and still take it every 12 hrs but only a pill a day instead of two.? I like this possibility since it can penetrate the blood brain barrier and possibly be a treatment for the cells floating around in my spinal fluid??

Have a great holiday! And good luck on your journey. I found your post very interesting. Thank you again.

[SofiaDeo in reply to Rico49]

Unless a pill is scored, it's not recommended to cut it in half. Scored tablets are designed and tested, to where approximately 1/2 the drug is found in the scored half. Non scored tablets are not required to be evenly dispersed, and they often aren't. So you might get 1/4 dose in one half, with the other 3/4 in the other half. With some patients and some medications, docs have had to resort to cutting a regular pill in half, but it's not generally recommended. Cutting an aspirin in half, for example, to approximate a baby aspirin for preventative clotting effect is not quite the same thing, there's not a potential negative effect if only 1/4 of the dose is received. Or if one got only a portion of an antacid, if one were to only take 1/2 a Tumstablet.

[Rico49 in reply to SofiaDeo]

Thank you for for that information, I hadn't heard it explained that way. I thought about cutting it in half because one of the other responders said they were put on one pill a day, instead of two. . However, I believe the Acal is designed to last 12 hrs , thus the one pill ever 12 hrs is normal . So even if the dosage is different in each12 hours if I cut I'd at least have something working over the whole 24 hours but getting half the normal dose.. That was my thinking. I plan to ask the Dr on Jan 12th. Happy Holidays!!!