Remission and temporary discontinuation of Ibrutinib

[MikeOr]

Is there any information about effects of temporarily discontinuing Ibrutinib after a temporary remission has been achieved ? Would it become less efficient after treatment has to be restarted ?

[cllady01 Former Volunteer]

If you will edit your post to lock it, you may get replies from people who have experience with stopping Ibrutinib for various reasons at various stages. There is no one answer that fits all, however, because we are all different.

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[Irishgreek]

Hi Mike,

I used Imbruvica for three and a half years before my heart got damaged using it and I had to quit. Twice during that time I went off Imbruvica, once for three months, and once for six months. I came back on in both cases and it has the same great impact as it had before I stopped the use.

[LeoPa]

From what I have read on this site some people had a ruptured spleen as a consequence of stopping Ibrutinib due to sudden out of control proliferation of lymphocytes.

[AussieNeil Administrator in reply to LeoPa]

One of our volunteers had a ruptured spleen after coming off idelalisib, but had a bruised spleen beforehand. The risk would be there with BTKis too, but would be low with both inhibitors.

[PaulaS Volunteer]

Hi Mike, It was me who had the ruptured spleen when stopping Idelalisib.

However, my spleen had been extremely enlarged as well as bruised beforehand. That made it very vulnerable..

When I stopped the Idelalisib I hadn't been on it for long and was not in remission (like you are), My lymphocytes were still extremely high so there were LOTS of them in my bloodstream, where they could easily go dashing back into the spleen (where they'd been before). Thus the spleen enlarged very suddenly, putting extra strain on the already weakened capsule that encloses it.

It's good to be aware of dangers to the spleen, as rupture is such a dangerous thing... Thanks for that reminder, LeoPa . However, as AussieNeil has said, the risk is low and usually there are other factors involved.

I've been on Ibrutinib for over 4 years now, and doing well on it. I'm not yet technically in remission (ALC still too high) but I've stopped Ibrutinib several times for minor medical procedures (eg cataracts, skin biopsy) with no problems afterwards.

Everyone's different though. I am 13q deleted and IGHV mutated so have "good" markers.

Sounds like you're in remission at the moment, which is great. Has your haematologist suggested a break from Ibrutinib?

Best wishes as you make your decision on this

Paula

P.S. Just looked at your previous posts and see it's your Dad who has CLL not you. Best wishes to both of you , as you think through these things.

If your Dad's getting side effects from the Ibrutinib, it could be a good idea to have a break, but these decisions can be complicated - many factors involved.

[LeoPa in reply to PaulaS]

I looked it up. There was another case. The husband of GrannyMyers had a similar problem about a month ago.

[PaulaS Volunteer in reply to LeoPa]

Ah yes, thanks LeoPa . I should've remembered GrannyMyers - especially as I've been responding to comments from her just recently!

Paula

[SamanthaJane123]

What do you mean by temporary remission? It's my understanding that ibrutinib is a drug you stay on unless you can no longer tolerate it or if your cancer has progressed.

I was on ibrutinib for one year before having to stop because I got persistent Afib. When I stopped ibrutinib my hematologist said that because I had been on the drug for a year I may not need treatment for 2 years. I was delighted.

Unfortunately, my nodes became visibly large within weeks and I needed to start my second line of treatment as soon as possible. (I have SLL.)

[nthegroove]

When I stopped Ibrutinib I was good for about 2 years before starting treatment again

[2grandsons]

I, too, have had breaks in my treatment with Imbruvica. Mine have all been a result of not getting my refills in good time. When this happens, I get all of the “B symptoms” that I had before treatment and my lymph nodes become HUGE. The breaks have caused no issues for me