Experience of taking ibrutinib : Hi, my dad has... - CLL Support

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Experience of taking ibrutinib

Elnaazz profile image

Hi, my dad has been taking ibrutinib for a week, but it has increased a lot this week wbc increased from 370000 to 600000. Does anyone have any experience to help me?

39 Replies

Elnaazz, a big jump in wbc after starting ibrutinib is perfectly normal and a sign that ibrutinib is working. The jump is due to cll cells being flushed out of the lymph glands into the bloodstream. Your dad should soon notice any lumpy glands he has start to reduce to normal.

It could take a couple of years for his wbc to normalize, and that's actually normal and a good thing too. Good luck to you and your dad.

Here is an article explaining all this if you want more technical info:

ncbi.nlm.nih.gov/pmc/articl...

Elnaazz profile image
Elnaazz in reply to cajunjeff

Thank you very much for your complete explanation, I hope it gets better

Elnaazz profile image
Elnaazz in reply to cajunjeff

Doctor recommend metilprednisolon medicine along with ibrotinib? Do you have any information?

SofiaDeo profile image
SofiaDeo in reply to Elnaazz

Methylprednisolone has been used in the past to help control CLL. Long term use of it, as well as other steroids, can have some adverse effects.

pubmed.ncbi.nlm.nih.gov/196...

This 2020 reference talks about its' use in p53 deleted patients.

sciencedirect.com/science/a...

Yes, absolutely normal! The same thing happened to me when I started Ibrutinib. Now my WBC is in the healthy range. But a spike is perfectly normal at first.

Elnaazz profile image
Elnaazz in reply to BookLovah20

Thank you 🙏🏻 May I ask how much it was for you? And how long did it take? Did the doctor prescribe a special medicine for you?

This is trafford and when I was put on ibrutinib I was told initially that the white sell count would increase dramatically.Mine was the same and then it starts to come down.To give you a comfort factor, my white cell count is now 28.Hope this gives you some sort of comfortThanks Trafford Reeder

Elnaazz profile image
Elnaazz in reply to studi

Thank you 🙏🏻 may i ask you how long did it take?

studi profile image
studi in reply to Elnaazz

I have been on ibrutinib for 2 year with no side effects at all.I am due to have another telephone consultation in 4 weeks time where it will have dropped even more.All my other bloods are as normal.Hope this helps to reassure you Thanks

Trafford

Elnaazz profile image
Elnaazz in reply to studi

Thank you so much, I hope it goes well for you

Mine went from abt 350, 000 to 779,000 after starting IB. and is taking time to come down. That was over a year ago and mine is still over 150,000. It is scary but hopefully a successful treatment in the long haul.

Elnaazz profile image
Elnaazz in reply to lindalou5

Thank you so much 🙏🏻 Did the doctor prescribe another drug to reduce it besides ibrutinib for you?

lindalou5 profile image
lindalou5 in reply to Elnaazz

I was switched to Acalabrutinib as I had really bad bleeding issues with the IB, but they both work the same way. No other meds. Just a lot of patience.

Elnaazz profile image
Elnaazz in reply to lindalou5

And may i ask you how long it took for you to get up because my dad has only been on ibrutinib for a week

lindalou5 profile image
lindalou5 in reply to Elnaazz

If you mean 'up' as in how long it took for the number to climb that high..it was within the first week. All my lymph nodes started shrinking tho, and that was great!

Elnaazz profile image
Elnaazz in reply to lindalou5

I mean, how long did it last and then decrease? I hope it goes well for you

lindalou5 profile image
lindalou5 in reply to Elnaazz

I don't remember exactly when..I was pretty sick and weak, had lost 80 pounds when all this happened. I think it might have been a month or two before it started coming down. When there is that many cells in the blood stream to start out the process, and then the medicine pulls more of them out of the nodes and bone, it kinda explodes in you. Not fun, but it will turn around!

Elnaazz profile image
Elnaazz in reply to lindalou5

Thank you very much for sharing your experiences with me. I hope everything goes very well for you.

Hi ElnaazzIf you are looking for numbers -

Here's how my lymph counts were ( ALC); 188 on starting Ibrutinib, went to 205 then 207 on the next 2 months then to 58 the following month and 12 months later the ALC was 6. The counts have since swung up and down but within a small range.

Regards

Elnaazz profile image
Elnaazz in reply to morepork

Thank you so much 🙏🏻 Did the doctor prescribe another drug to reduce it besides ibrutinib for you?

morepork profile image
morepork in reply to Elnaazz

No, I was given nothing else, apart from some anti-nausea tablets in case I needed them. I did not need them. (But I did have some gut upset which I still experience, along with muscle aches, both of which can be common for some people on Ibrutinib).

Elnaazz profile image
Elnaazz in reply to morepork

Thank you so much I hope it goes well for you 🙏🏻

Hi. It is not unusual for wbc to increase sometimes drastically. I had the same though not such a large increase when i first started taking Ib. Best wishes.

Elnaazz profile image
Elnaazz in reply to Jacksc06

Thanks for your answer, may i ask you how long did it take to reduce?

Jacksc06 profile image
Jacksc06 in reply to Elnaazz

Hi. After the initial peak the counts dropped gradually over several months.

Elnaazz profile image
Elnaazz in reply to Jacksc06

Thank you i hope it goes well for you

Jacksc06 profile image
Jacksc06 in reply to Elnaazz

Thank you. IB has improved my quality of life so much for the better. Best wishes to you and your father.

Elnaazz, Please take a look at this post that I made earlier about the improved survival of patients with prolonged lymphocytosis during ibrutinib therapy:

healthunlocked.com/cllsuppo...

As many have said, the rapid increase in lymphocyte count is expected following initiation of ibrutinib therapy. What these articles are saying is that a slow return to normal levels over months is not a bad sign at all, in fact a slower return to normal may be a positive sign.

Relative to your question about methylprednisolone, there are a couple of references about steroid use with ibrutinib. The first was an in vitro study, the second was a clinical trial based on in vitro studies. However I have found no followup on the clinical trial.

The ibrutinib B-cell proliferation inhibition is potentiated in vitro by dexamethasone: Application to chronic lymphocytic leukemia

pubmed.ncbi.nlm.nih.gov/272...

In another reference:

In vitro studies have shown that nurse-like cells (NLCs) will protect CLL cells against spontaneous apoptosis by producing chemokines and interleukins such as SDF1, suggestive of a mechanism of ibrutinib resistance. Dexamethasone, a steroid, was found to decrease NLC viability, therefore potentially increasing the effectiveness of ibrutinib.

ashpublications.org/blood/a...

The addition of dexamethasone to ibrutinib was shown to be beneficial in another blood cancer:

pubmed.ncbi.nlm.nih.gov/294...

Best wishes to you and your dad.

gardening-girl

Thank you very much for providing this useful information, I am reading the content, they will be helpful for us

Similar experience. Before starting embruvica wbc over 300,000 then after starting embruvica went to 697,000. Two and a half years later down to 48,000. Wishing your Dad the best.

Elnaazz profile image
Elnaazz in reply to Ginajetta

Thank you so much 🙏🏻 Did the doctor prescribe another drug to reduce it besides ibrutinib for you?

Ginajetta profile image
Ginajetta in reply to Elnaazz

No. Ive been in 280mg a day since september 2018. I am unmutated trisomy 12+ CD38 .. not the best markers.,?diagnosed in 2007. No treatment until 2018 . Im 74.

My husband's jumped dramatically too. Took 6-8 months to come to normal. Still on ibrutinib 8 years later and doing great.

Elnaazz profile image
Elnaazz in reply to Ibru

Thank you so much 😊

joanne17 profile image
joanne17 in reply to Ibru

Did I read that correctly? Been on Imbrutinib 8 years? I've been on 5+ years and doing pretty good also.

Ibru profile image
Ibru in reply to joanne17

Yes, my husband has been on ibrutinib for 8 years. It was his first and only treatment.

joanne17 profile image
joanne17 in reply to Ibru

I have an appointment on Tuesday and will find out if I can discontinue my medication. It is a research program and if I'm approved I will be monitored monthly. Has your husbands doctor given you any information on how long they expect Ibrutinib to continue working ?

Ibru profile image
Ibru in reply to joanne17

No but we have not asked the doctor. We have not seen the CLL specialist in almost 2 years ( usually once per year, but due to pandemic we skipped because it is out of town.) The local oncologist, who we see every three months, does not do any research and that is the only doctor we have seen.

joanne17 profile image
joanne17 in reply to Ibru

Thanks for your response. Stay healthy, both of you.👍

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