Ibrutinib and low platelet : Hello, my father... - CLL Support

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Ibrutinib and low platelet

Elnaazz profile image
18 Replies

Hello, my father have been taking ibrutinib for a month. His WBC has decreased but his platelet count has decreased and doktor stopped ibrutinib for test. Does anyone have any experience with this? Can it be increased with herbal medicines or foods?

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Elnaazz profile image
Elnaazz
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18 Replies
AussieNeil profile image
AussieNeilAdministrator

How low is your father's platelet count? Transfusions aren't required until the platelet count drops under 10 if otherwise well and under 20 if ill with an infection. Reference range is typically 150 to 450.

Neil

Elnaazz profile image
Elnaazz in reply to AussieNeil

It is about 20 this time

AussieNeil profile image
AussieNeilAdministrator in reply to Elnaazz

Mine dropped from the 50s to a nadir of 29 about a week after starting on Acalabrutinib. It stayed around 30 for a week before recovering over the next three weeks back into the 50s and I had febrile neutropenia at the time. I didn't need a platelet transfusion.

Elnaazz profile image
Elnaazz in reply to AussieNeil

Did it increase after that? Did you take any medicine or food? Thank you for sharing your experience

AussieNeil profile image
AussieNeilAdministrator in reply to Elnaazz

Yes, my platelet count increased significantly without taking anything to boost it other than the Acalabrutinib. Your father just needs to remain patient a bit longer for the Ibrutinib to clear out the bone marrow (which it does quite well) just a bit more, to overcome the bone marrow suppression factor. It's understandably a worrying time.

Elnaazz profile image
Elnaazz in reply to AussieNeil

Yes, it is a worrying situation right now, but I hope it goes as you say. Thank you very much for your comment.

AussieNeil profile image
AussieNeilAdministrator in reply to Elnaazz

I've updated my reply above after checking my blood test records. I had some marked bruising at the time, but extended bleeding after blood tests (which I was having daily) wasn't an issue. We are all different and Ibrutinib does tend to also reduce clotting efficiency, so it's important to watch for any bleeding tendencies and also keep a close eye on haemoglobin levels (a significant drop can indicate internal bleeds).

Elnaazz profile image
Elnaazz in reply to AussieNeil

We must be careful thank you for your comment 🙏🏻

morepork profile image
morepork in reply to Elnaazz

My platelet count dropped dramatically after starting Ibrutinib but seems to have levelled off at around the 70's to 80's range. Abnormal but not requiring treatment. I have had several 'under the skin' bleeds and one dramatic nose bleed which required a visit to the ED but otherwise all OK.

Elnaazz profile image
Elnaazz in reply to morepork

Did it increase after that? Do you continue to take ibrutinib?

morepork profile image
morepork in reply to Elnaazz

Yes I still take Ibrutinib though now 280mg rather than full dose. Platelets remain in 70-80 range, which is quite usual for many when taking Ibrutinib. I don't take aspirin or ibuprofen for pain relief anymore. 😊

Elnaazz profile image
Elnaazz in reply to morepork

Yes, 70-80 range for platelets are usual. Thank you for your comment

studi profile image
studi

I have been on ibrutinib for nearly 2 years and my white cell count is down to 23 and falling.My platelet count has increased to nearly normal,and have not any sign of platelet reduction.

Does any one know ,when ones white cell count is coming down that the platelet count starts to climb again.I think initially mine dropped slightly but now is back to normal and i am still taking ibrutinib.

Thanks

Trafford Reeder

AussieNeil profile image
AussieNeilAdministrator in reply to studi

It's not a straightforward relationship. There are 5 white cell types (6 if you count young and mature neutrophils separately). While lymphocyte counts slowly fall on Ibrutinib, about 2/3 patients see a rise for the first few months, while some only see a gentle fall. Eventually the improving bone marrow capacity can produce more platelets.

This post exains more about accurate measurement of white blood cell types.

healthunlocked.com/cllsuppo...

Neil

DelrayDave profile image
DelrayDave

When I started ibrutinib six years ago they reduced the dose when my platelets hit 60. Also 2 transfusions for hemoglobin in the 7 range. And neutrophils went as low as 0.8. But the numbers got better after a few months and dose back to 420 mg. Platelets ran usually around 100 to 130, neutrophils 1.0 to 1.6 and hgb in the 11 to 13 range. Latest platelets were 148, neutrophils 2.2 and hgb was 12.1. So for me, after those few months the numbers are OK.

David

Elnaazz profile image
Elnaazz in reply to DelrayDave

How long did it take for platelets to rise? Thank you for your comment

DelrayDave profile image
DelrayDave in reply to Elnaazz

They never went below 60. They went up thru the 70s and 80s, hit 124 after 6 weeks, then an 88, then up to normal after 4 months or so. After 3 years of ib they started down again. Ranged from 100 to 130. Now 130 to 150. (A week of Linezolid antibiotic shot them down to 61, but right back up when the week's course was over.)

David

Elnaazz profile image
Elnaazz in reply to DelrayDave

Thank you for your comment 🙏🏻

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