Experience about taking ibrutinib

[Elnaazz]

Hello friends, my father has been taking ibrutinib for seven months and his WBC has reached 40,000. Does anyone have experience with using ibrutinib ? Thanks for sharing your experiences because my dad's doctor said he might need to change medication.

[lankisterguy Volunteer]

Hi Elnaazz,

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I see from your past postings that your Dad's WBC was 370k when he started Ibrutinib 8 months ago and it jumped up to 600k and has been declining steadily since.

You may want to revisit some of the replies from 8 months ago: healthunlocked.com/cllsuppo...

and

healthunlocked.com/cllsuppo...

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Your dad's experience seems similar to most of us that have taken Ibrutinib and as the replies above indicate there are some theories that a slow steady decline ( e.g. : over a few years) is the best way to have a long period without problems from CLL.

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I believe that most CLL experts would recommend continuing on Ibrutinib- some papers presented last weekend at ASH show 7 or more years of success for over 70% of patients on continuous treatment with Ibrutinib. See cllsociety.org/2021/12/ash-...

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If there was a strong reason to shorten the treatment ( e.g. Cardiac problems like AFIB or hypertension - high blood pressure) then some doctors might suggest adding Venetoclax to the Ibrutinib for 12-18 months to get to MRD-U ( Minimal Residual Disease - UnMeasurable or UnDetectable) and then stopping all treatment. Or changing to a different BTK inhibitor like Calquence / Acalabrutinib.

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Len

[Elnaazz in reply to lankisterguy]

Thank you for your help and answer, no Im not in USA

[PaulaS Volunteer]

Hi Elnaaz,

You ask about experience with Ibrutinib, so here is mine.

In October 2017, my WBC was 540k . Absolute lymphocytes 508k. I started on Ibrutinib and soon my counts shot up to over 600k. However, ever since then they have slowly decreased.

In April 2019 my WBC was 49k (absolute lymphocytes 42.9k). So it had taken 18 months to drop from 540 to 49.

In Jan 2020 (two and a half years after I’d started Ibrutinib) my WBC was 35.6k.

My latest test, done November 2021, was WBC 20k.

My haematologist is very happy with this, even though my lymphocytes are still not in normal range. My haemoglobin has been very slowly improving over the years, which in some ways is more important than the WBC.

People vary greatly in their responses to Ibrutinib, and as lankisterguy Len has said, a slow steady decline in WBC can be a good sign and not to worry about.

It seems to me that your father is doing fine, as his WBC has gone from 600k down to 40k in just 7 months on Ibrutinib. If his platelets and haemoglobin are also OK, I’m surprised that his doctor is saying he might need to change medication. It would be good to ask for his reasons for suggesting this. If your father suffering side effects from the Ibrutinib?

Best wishes to you and your father,

Paula (in UK)

P.S. I'm writing "k" instead of "thousands" to save time. I'm aware there can be confusion about this, especially when different countries have different ways of expressing numbers.

[Elnaazz in reply to PaulaS]

Thank you so much for sharing your experience with me it is so helpful for me, yes i was surprised too that he said it, yes they are normal now. Best wishes for you too

[cajunjeff]

Elnaazz, the main reasons people stop ibrutinib iare because it stops working or they have intolerable side effects. No one can tell from your post why his doctor want to change meds. It sounds like his wbc is steadily going down. it might take a year or two to normalize, its actually good if it gradually goes down as in his case.

A third reason to change from ibrutinib, not nearly as common as the first two, is that the doctor believes a similar drug like acalbrutinib might work better.

You might get more helpful feed back on your question if you could tell us why his doctor wants to change meds. Nothing you have written indicates ibrutinib is not working other than some understanding you have his doctor wants to switch. Its not typical for ibrutinib to stop working that fast nor is it typical to change from a drug that is working.

[lindalou5 in reply to cajunjeff]

Ib stopped working for me rather abruptly-I think had a lot to do with other issues (possibly not being absorbed) that was reacting with and possibly cause, also the bleeding side effects were scary to deal with. The acal. worked and is still working for me. So do not know why the difference. Both were very slow to bring my WBC down and still in the 100,000's after two years. monitoring and treating other numbers as needed.

[cajunjeff in reply to lindalou5]

Linda, as I understand it, a certain number of people stop taking ibrutinib because of intolerable side effects like afib or rashes. Those people can switch to aclabrutinib and still do well, they are intolerant to ibrutinib, not resistant.

If acalbrutinib is working for you, its unlikely you were ever resistant to ibrutinib. They work the same way, someone resistant to one covalent binding btk drug will be resistant to all covalent binding btk drugs.

For people starting their first cll treatment with a btk drug, resistance is rather rare. Intolerance is the bigger problem, but sometimes just switching to another similar btk drug overcomes intolerance.

For people truly resistant to a btk covalent binding drug, non covalent binding btk drugs in development now might end up working for them.

[Elnaazz in reply to cajunjeff]

Yes you’re right, so it is normal to decrease over time, thanks for your response