Six weeks of Ibutinib no improvement? - CLL Support

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Six weeks of Ibutinib no improvement?

Tapps profile image

I know I’ve asked before, but at six weeks of Ibutinib, the lab numbers have changed very little.

Now I’m worried that it’s not working?

Am I looking for too much to soon?

Dx 2012, GAZYVA in 2015,

Ibutinib this July 2020

IgVh Unmutated, 17p negative, Platelets 83.

Lymph’s 75.

Have you worried that it wasn’t working?

Thank you

15 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi Tapps,

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I would suggest that the only reaction normally found in the first 6 weeks of Ibrutinib would be nodes and spleen shrinking. Did you notice any changes in them?

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And for most people the Lymph# / ALC would rise instead of remaining flat.

If you have no side effects and your platlets and Neut# / ANC is stable, then you should be able to relax and enjoy the ride.

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You doctor may put you on a 3 month schedule for blood tests & exams. And hopefully in 6 months to one year, you may achieve what many of us strive for- to become a boring patient.

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Len

Tapps profile image
Tapps in reply to lankisterguy

Thanks for your reply 😊

Are you on full dose 420 mg. A day ?

Also has your WBC peaked yet or on a decline ? Usually your wBC rises once you start treatment then it declines.

What was your WBC 6 weeks ago and what is it now ?

Tapps profile image
Tapps in reply to Canuck901

Will have to look at the last labs !

This is not a medical or scientific opinion, but at six weeks in on ibrutinib I would not expect to see much change in your labs but for an increase in your wbc. A sudden increase in wbc would actually be evidence ibrutinib is working.

If you had swollen nodes when you started, they should have shrunk some by now. The increase in wbc would be Cll cells being chased from your nosed to your bloodstream.

Did your wbc go up? Did you notice any nodes shrinking? Those are the main two things I would expect you to see so early on. Improvement in hemoglobin and platelets took a much longer time for me.

Tapps profile image
Tapps in reply to cajunjeff

Thank you :)

bkoffman profile image
bkoffmanCLL CURE Hero

No drop in the ALC at 6 weeks would be of no concern as long as the HGB and platelets are stable or improving and hopefully any enlarged nodes or spleen are shrinking. Brian Koffman CLLSociety.org

Tapps profile image
Tapps in reply to bkoffman

Thank you, I guess I just am impatient, and worried. Appreciate the reassurance.

Have patience. I started on Ibrutinb in Sep 18 and nothing started to change until Feb 19. Some people are naturally “slow burners” and take time for the drug to do its stuff.

I’ve now been on it for nearly 2 years and my levels continue to drop but at a slower rate than most

Tapps profile image
Tapps in reply to P444ete

Thank you

I am also 17p negative and have been on Ib for over 6 months. My numbers actually went up slightly in the beginning, but now there are all perfect! My onc told me to expect it to work that way.

Please practice some patience and you will be pleasantly surprised!

Warm regards, Nancy

Tapps profile image
Tapps in reply to Nanno77

Thank you 😊

Thank you

Try to be patient , my spleen shrunk in the first week and WBC went way up, which the group assured me was normal and probably working.

After a year I'm almost in normal range. For some of us it isn't an over night change. Slow and steady for me.The main thing is if you feel good and are managing the side effects.I feel really good and have my energy back, new normal that is.❤🤸‍♀️🏃‍♀️

Thank you 😊

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