First four weeks on Imbruvica: First month on... - CLL Support

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First four weeks on Imbruvica

kwarehime profile image
22 Replies

First month on Imbruvica how high can should I expect WBC count go up? Mine went up quite a bit and I’m worried

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kwarehime
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22 Replies
PaulaS profile image
PaulaSVolunteer

Hi Kwarehime, My WBC was over 500 (thousand) before I started ibrutinib, and after a few weeks of taking it, the count had gone up to over 600 (thousand). It varies a lot between different people though.

I hope you wont worry about it. When the count goes up its an indication that lymphocytes are bring drawn out of nodes and spleen and into the blood where they can die off more easily.

Best wishes

Paula

kwarehime profile image
kwarehime in reply to PaulaS

Thanks Paula

Mine went from 130 to 260 so I'll try to not worry too much I was told it would go up but didn't expect that spike so I guess there are now a lot for the drug to attack :)

Lola69 profile image
Lola69

I never had high WBC. ( SLL). But my WBC Of 1 has risen to 3.6 ( normal is 4-11 normal you will rise then eventually WBC will become normal.

zaax profile image
zaax

yes it means its working as the . Make sure during this peroid you drink plenty of water - more than 3 pints

kwarehime profile image
kwarehime in reply to zaax

I do probably double that each day

Sam-1 profile image
Sam-1 in reply to zaax

Yes I agree plenty water, also as the lymphocytes lyse uric acid go up, then u need allopurinol to bring u.a down, also drinking a lot of water is good but u need supplement of electrolytes specially sodium, potassium and magnesium, talk with ur doctor.

Bell53 profile image
Bell53

Hi kwarehime

My count has gone from 64K to 479k over the 12 weeks I have been on Ibrutinib. There was very little change between week 8 and 12 so I am assuming I peaked over the last month and am expecting at least a bit of a decline in the numbers at my next appointment at the end of this month

Best wishes on your journey

Heather

BSMI profile image
BSMI

I get confused about the apparently different ways that WBC is measured?

But I have charted mine over several years & (like Lola69) understand that range 4-11 is normal.

After 5 years within normal range, my WBC suddenly jumped into the 30s last year, so I was then started on Ibrutinib.

Within a week it had jumped to 59 (which my haematologist said to expect), but then within a further month had dropped back to 19, & is now hanging around 12.

Hope this helps,

AdrianUK profile image
AdrianUK in reply to BSMI

With regard to the WBC measuring haunts where we say 4-11 the Americans often say 4-11,000. It’s the same values but different ways of defining the units if that makes sense. It’s almost impossible to get to 1,000 in our readings or 1,000,000 in theirs. But it can cause some confusion at the lower end. So my lymphocyte count for example is 0.5 having previously been 95 (95,000 by USA). But if I described it as 500 using the American system you might thing it was very high using our system!

And the white blood count is usually almost the same number as the lymphocytes plus the neutrophils as the other forms of white blood cells are much list frequent. So it’s best to focus on the neut and lymph counts separately.

See also this definition:

“The normal range for the white blood cell count varies between laboratories but is usually between 4,300 and 10,800 cells per cubic millimeter of blood. This can also be referred to as the leukocyte count and can be expressed in international units as 4.3 - 10.8 x 10^9 cells per liter.”

medicinenet.com/script/main...

BSMI profile image
BSMI in reply to AdrianUK

Thanks Adrian,

migirlusa profile image
migirlusa

Mine went up to almost 300 thousand and my ABL went through the roof. I’m going on 6 months and all blood work, except for RDW, is in normal range.

I’m feeling great. 💃

Best wishes.

Pam

hhk50 profile image
hhk50

Prior to starting Imbruvica, my WBC was 95. The first week on Imbruvica it shot up to 230. Since then (3 months) it is slowly dropping and is now at 68.

kwarehime profile image
kwarehime in reply to hhk50

Looks like you and I are similar in numbers hoping for same results

kwarehime profile image
kwarehime

Thanks everyone...I checked today and my spike is not unusual per se and it's showing its working !

Thanks all I love this group keep up the great discussions

Ginajetta profile image
Ginajetta

I started imbruvica sept 2018. WBC was 324,000 shot up to 697,000 now WBC at 471,000. It’s the imbruvica working. Wish you well.

Lisa-1959 profile image
Lisa-1959 in reply to Ginajetta

What symptoms were you having when you started the imbruvica?

Ginajetta profile image
Ginajetta in reply to Lisa-1959

No real symptoms except more fatigue. My hemoglobin was also down to 9.1 and platelets 109. I had been seeing Dr. Rai in NY even though I now live in Florida. He has been following me during my w/w almost 12 yrs. I have trisomy 12+ CD 38 and unmutated IGVH. Since i live in Florida I had to see someone here. So now travel an hour to Orlando to see an oncologist who started me on imbruvica 280 once a day. I have many drug allergies so started at lower dose.

Lisa-1959 profile image
Lisa-1959 in reply to Ginajetta

Thanks for sharing your symptoms. I am really wondering if my doc jumped the gun on starting treatment. I am 59 and was diagnosed 21 years ago. I have felt fine, hemoglobin just barely below normal, platelets around 120, and no fatigue. I was hospitalized twice this year (flu/pneumonia in January and food poisoning dehydration in July), and my spleen is enlarged. IGG is around 250 which is primarily why my oncologist decided to start me on Ibrutinib. Like you, my doc started me on 280 mg...then dropped me to 140 mg before taking me off completely.

Ginajetta profile image
Ginajetta in reply to Lisa-1959

Dr kanti Rai head of CLL research in NY believes in w/w for as long as you can. My spleen was also very enlarged. Your Platelets at 120 isnt bad at all. My platelets wete around 120 for a few years before i started treatment. With 324,000 WBC and hemoglobin around 9.1 and very fatigued thought time for treatment. I had pneumonia in 2013 and 2015 had appendectomy. Are you on any treatment now that you stopped imbruvica? What is yiur wbc and hemoglobin?

Ginajetta profile image
Ginajetta in reply to Ginajetta

Reading your post again and i think you doctor started treatment too soon. My hemoglobin was around 10 several years and said treatment because i felt well even with wbc over 200,000.

kwarehime profile image
kwarehime

Thank you! Ginajetta!!

kwarehime profile image
kwarehime

to update everyone I feel good to talk the Doctor and reassured me All is Okay...all the other numbers were good and this is very usual for first month or two. Did notice No swelling at Lymph nodes or Spleen and Liver. Numbers other than what relate to WBC numbers were good across the board.

Thanks All I feel lucky in general when I think about this

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