Low WBC on Venetoclax but feeling ok

[KelseyNoelle]

Hey folks! I feel like I'm reading more these days trying to find answers to questions already asked. I believe l'm on a particular protocol sensitive to my age and predictive factors. I started acalbrutinib in February, WBC 68 with very bulky nodes 11q deletion mutated. A few weeks ago began my starter pack of Venetoclax, WBC 6. Week 3 of V, stopped acalbrutinib and started V. Last week I started 200mg of V (my max dose because I'm also on carvedilol for palpations for almost 7 years now, which increases the bioavailability of V). WBC is now 4 (lower than normal range in USA). My doctor says "Im boring" now which in his words is a good thing. Is the WBC expected to be this low? Has anyone else have this experience? Anyone been on this protocol?

I overall feel okay, I can definitely tell there is a difference in medication. I think my body liked the acalbrutinib more than Venetoclax. The V makes me achy. I'm constanlty assessing myself for lymph node progression. All other labs normal. Besides the minor aches I am so appreciative of the quality of life and cosmetic appearance I've been returned due to treatment.

[cllady01 Former Volunteer]

Here is a link to blood test results showing the "norm" for WBC ranging from 4,000—11,000, so you are spot on with "4".

bloodtestsresults.com/norma...

Keep up the good work---hope all continues to go smoothly.

I take Acetaminophen at night to help with some of the aches and pains that have at some points disturbed my need for sleep.

[KelseyNoelle in reply to cllady01]

Hi cllady I'm trying to avoid pain meds as much as possible but I'm feeling more uncomfortable by the day. Hoping this side effect will wear down soon. Taking allopurinol but not helping my jaw pain at all. I also have coccyx pain which is the absolute worst. I fractured this bone when I was a teenager... causing so much pain now 😮‍💨

[cllady01 Former Volunteer in reply to KelseyNoelle]

Allopurinol is for keeping the Uric acid levels low--to keep kidneys safe and to avoid gout.

I agree with keeping pain meds. to a minimum, but when there is pain there is stress. I wonder if you may be clenching your teeth at night because of the pain--that could be a source of your jaw pain.

If you are not taking anything else that contains acetaminophen, you won't be overdoing taking some at night to be able to relax. Check with your Dr.

[Abby-pup in reply to KelseyNoelle]

I'm reaching the end of treatment with Obinutuzumab and Ventoclax. The best pain solution/soother I have found is soaking for 20 minutes in Epsom salts. Simple, inexpensive and relaxing and no pill involved.

[Winegrape in reply to KelseyNoelle]

Coccyx is the tailbone, correct? If so, I have that too and it's not fun! I have been wondering if it's part of the aches from this med or the infusions. I'm on Venetoclax but have just finished the O infusions. My white cells seem to stay a tad below normal. The doc isn't worried said it's normal while on this med.

[AussieNeil Partner Administrator]

Sounds like you are doing really well on your treatment. Per this post: healthunlocked.com/cllsuppo... you need to look at your individual white blood cell counts. Provided your neutrophil count is high enough (over 1.5 is generally seen as desirable), given you are in treatment, you can expect your lymphocyte count to be low, perhaps lower than the low reference range limit. That's because the acalabrutinib has worked well reducing your lymphocyte count (including your CLL cells and regrettably healthy B cells and the venetoclax has continued this. Your lymphocyte count should recover in the months after you finish treatment.

I had a similar treatment, with the addition of obinutuzumab/Gazyva. I reached uMRD and continue to do well 18 months after finishing treatment.

Neil

[KelseyNoelle in reply to AussieNeil]

Thanks Neil. I have an appointment Monday to ask about adding O. I haven't seen many treatments with only A & V. Neutrophils are on the climb up. In the normal range. Nervous because I thought we overshot the target as I've seen others possibly take months to get the WBC down

I am praying I reach uMRD!

[lankisterguy Volunteer]

Hi KelseyNoelle,

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I fully agree with cllady01 & AussieNeil you should be very happy with your current situation.

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Please watch your ALC / Lymph# separately from your ANC / Neut# the two major components of your WBC.

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As long as your ANC / Neut # is above 1.0 that is great, if it drops below call your medical team immediately.

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The ALC / Lymph# will go wherever it wants ( mine have been from 0.4 to 2.5 over the last 6 years- but my CLL expert is happy with that)

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I was on Venetoclax for 6 years and reached MRD-U (Minimal Residual Disease - UnDetectable or UnMeasurable) two different times.

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In January this year my CLL expert doctor added Acalabrutinib to the Venetoclax because my MRD numbers started rising over 1.3%. In April I was back down to 0.07% and we will be stopping the Venetoclax this year but keeping the Acalabrutinib for as long as it works.

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Len

[KelseyNoelle]

Thanks LenNeutrophils are 39 (had to look it up) ALC is 1.99 (highest was 5.13).

I guess I won't know my MRD until treatment is closer to finished. I've been an RN for over 20 years but I am so very green to this subject and diagnosis.

Thanks for the pearls of wisdom

[lankisterguy Volunteer in reply to KelseyNoelle]

Hi KelseyNoelle, -

If your WBC is 4 and your ALC /Lymph# is 1.99

then your ANC / Neut# needs to be below 2.

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Where you read 39 must be Neut% ( WBC of 4 x 39% = ANC / Neut# = 1.56 )

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The 5 types of cells that add up to the WBC are

Basophils.

Eosinophils

Lymphocytes (T cells, B cells, and Natural Killer cells)

Monocytes

Neutrophils

-

Len

[AussieNeil Partner Administrator in reply to lankisterguy]

KelseyNoelle,

Len beat me to this reply about your neutrophil count. Please ignore the white blood cell percentages* and only check the absolute counts.

It's common to have a lymphocyte count lower than the lower reference range count when your CLL treatment has worked very well. That's because we don't yet have any approved treatments that can selectively destroy CLL cells without also unfortunately destroying healthy B cells. So when all of the CLL cells in your blood have been vanquished, along with the healthy B cells, which normally make up about a third of the lymphocyte count, your lymphocyte count will be lower than usual. Venetoclax can also kill a few T cells off, but they will recover in the months after you finish treatment.

* If your report omits the absolute neutrophil and lymphocyte counts, you calculate the absolute counts by multiplying the percentage of white blood cell times WBC. Since you've given your absolute lymphocyte count number I expect you've just picked up the wrong neutrophil report line - it's easy done.

Neil

[KelseyNoelle in reply to AussieNeil]

Thank you I'll have to ask about the absolute counts

[Smakwater in reply to KelseyNoelle]

You can actually calculate them from the results on the CBC lab report. If you do not wish to bother with the calculations, ask them to run the report with auto differential.

JM

[KelseyNoelle in reply to lankisterguy]

Thank you

I dint think I see a specific line for ANC. Will ask about this at my next Dr appt

[KelseyNoelle in reply to lankisterguy]

Thank you

[C0llin]

Im on V & O (just Venetoclax now) cycle 8. My ALC is 0.5 and ANC is 2.0. Its normal to have a below normal range for ALC. I too am 'boring' . Specialist did say that a lot of people post treatment dont revover their ALC back to normal range. The V is just doing its job splendidly

[KelseyNoelle in reply to C0llin]

Wow! Thats awesome! Congratulations on being "boring".

[flipperj]

I'm on the same combo and my WBC was 1.2 last week.

[KelseyNoelle in reply to flipperj]

Ok. Thank you for replying to this post. Is your regimen V&O? Or V& A? 1.2 seems really low. Did you change your regimen after these results? My next blood draw is Monday. I'm just into my 2nd week of 200mg of V per day.