Imbruvica questionnaire

[Lorax59]

Anyone on imbruvica get off this medication upon remission? Did you end up going back on? How long were you initially on it before you stopped taking imbruvica? Are you on a different drug now?

[Sergi]

Hi

I don’t if that answers your question but it’s definitely related .

My wife was on Ibrutinib for 14 month and had to stop because of side effects.

Her blood test doesn’t show any movement yet after a month so her hematologist decided to put her back on W&W and then try another drug when the time comes (Venetoclax +Rituximab).

[Lorax59 in reply to Sergi]

Sorry to hear about your wife struggles find a drug that works!

[cll2013]

I was on Ibruvica 3 years. Have been off it for 1 year. So far so good though I have had skin rash problems. My doctor says I will at some point need medicine again, but not yet.

[Justasheet1 in reply to cll2013]

May I ask why you stopped? Was it due to an adverse effect and will you be going back on it?

Jeff

[cll2013 in reply to Justasheet1]

Stopped due to afib incident that landed me in the hospital. When additional treatment is needed, it

will be something different than Ibrutinib.

[Justasheet1 in reply to cll2013]

Is Acalabrutinib an option for you to start back or will you wait till treatment is necessary again and enjoy a drug holiday as long as you can.

Jeff

[W00dfin]

I was taken off Imbruvica in November due to developing atrial fibrillation as a side effect. I am having a flow cytometry every other month with results indicating the CLL is in remission. My oncologist says CLL typically stays in remission for 2 years after stopping Imbruvica. So far 😊 good.

[Lorax59]

Thanks everyone for responding to my questions about imbruvica! I just started but at a lower dose 285 mg vs the 420 mg. Hoping to avoid some of the side effects mentioned above. Is it typical for imbruvica to increase the number of Cll type cells in your blood? I just went for my first follow up appointment and my wbc count jumped by 100k. Should I be worried? My doctor didn’t seem concerned

[sllincolorado in reply to Lorax59]

That jump is expected. Might take a few months for the numbers to turn around. I second justasheet that acalabrutinib can be an alternative if side effects are severe.

[Lorax59]

I mentioned that drug to my oncologist but he wondered if it is a cousin to imbruvica I’d have same reactions? Do you have any info on the alternative drug?

[AussieNeil Partner Administrator in reply to Lorax59]

Acalabrutinib/Calquence is a second generation, more selective BTK inhibitor that is reported to have a lower side effect profile and received FDA approval for CLL late last year. What side effects are you experiencing? Keep in mind that it is typical for side effects to diminish over time.

There are another 9 BTK inhibitor drugs on trial for CLL

healthunlocked.com/cllsuppo...

I've been on Acalabrutinib for 3 months on a full dose of 100mg taken twice a day and now have no side efects other than increased tiredness, but that could be due to the Venetoclax and Obinutuzumab or just due to the CLL tumour due off and my bone marrow recovering.

Neil

[Lorax59]

What does ventoclax do for your CLL? Obinutuzumab Acts like rituxin correct? Mayo Clinic uses Obinutuzumab.

[AussieNeil Partner Administrator in reply to Lorax59]

Venetoclax is an extremely effective BCL-2 inhibitor that kills CLL cells so rapidly, you need to gradually ramp up your dose from 20mg per day to 400mg per day, doubling the dose each week, while taking Allopurinol to protect against Tumour Lysis Syndrome. It seems very likely that Venetoclax and at least one other drug will be the next gold standard treatment for limited time treatment.

Neil