Ibrutinib and A-fib

[Abc123qaz]

I was doing well on Ibrutinib, lumps in neck almost disappeared within days of starting Ibrutinib. Afib got a lot worse and then chest pain that I’d never experienced before. Put on blood thinner, Xarelto and taken off Ibrutinib. Can anyone tell me why I can’t continue with Ibrutinib whilst on blood thinner? Please, as I can’t face more Chemo tx

[lankisterguy Volunteer]

Hi Abc123qaz,

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This is definitely something that qualifies as medical advice, so we cannot answer a specific question about what is best for your situation. You need to talk to your doctor and if at all possible, get a 2nd opinion from a CLL specialist that has lots of experience with Ibrutinib.

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For general information about Ibrutinib and blood thinners, you can start with the box labeled "Related Posts" on this page. (upper right column on computer screens, scroll way below on mobile devices).

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From general reading of past opinions expressed by CLL expert doctors: Ibrutinib has a history of acting as a blood thinner in some patients, causing bruising and bleeding. So there are cautions about taking aspirin, coumadin/warfarin, and other blood thinners while taking Ibrutinib. In addition some patients have Afib side effects from taking Ibrutinib.

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The blood clotting & blood thinning in a specific person is very complex and involves up to 12 different factors.

See en.wikipedia.org/wiki/Coagu...

and

labtestsonline.org.au/learn...

So your doctor may be very wary about having two different drugs affecting your blood clotting and possibly creating a very complex - difficult to manage health issue.

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Here in the USA, some doctors would switch to a different targeted therapy like Calquence/Acalabrutinib, Zydelig/Idelalisb or Venclexta/Venetoclax. I am not familiar with what of those drugs are available in Ireland.

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Len

[Abc123qaz in reply to lankisterguy]

Thank you I understand what you’re saying the bloods are so complicated. I’m beginning to loose interest in the whole thing. I’m waiting for Ibrutinib to leave my system, about five more weeks, in the meantime life is ‘shit’ can’t enjoy anything with this fatigue, not even lying down to rest and my head gets really painful. It must be the nodes at the back of my neck!! When I get up the pain goes. The next tx is Venatoclax and Rituximab but do I really want to prolong the agony!!!

[lankisterguy Volunteer in reply to Abc123qaz]

I did not have good results on Ibrutinb but Venetoclax has been a wonderful treatment for me.

Next week I start my 5th year on Venetoclax.

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I reached U-MRD - Undetectable Minimal Residual Disease at 6 months and tried to pause treatment at 18 months, but had to restart at 22 months. I continue to be very close to U-MRD with no symptoms and nearly every blood test in normal range - except IGG, IGA & IGM.

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Len

[Abc123qaz in reply to lankisterguy]

Sorry for being so down this morning. This is a good day, seem to have lots of energy. Will definitely go ahead with venetoclax , and maybe he’ll change his mind about Rituximab?

On the good days life is so worth living.

Thanks again Len.

Eileen

[kgrant1741]

My husband had afib issues with ibrutinib. Now on acalibrutinib (calquence) which is a 2nd generation btk inhibitor (ibrutinib is 1st generation). No longer having afib issues!!!! Been on it for 12 months now

[Abc123qaz in reply to kgrant1741]

Thank you kgrant, I’ll ask my consultant about that. He’s going to put me on Venetoclax and Rituximab in 5 weeks when Ibrutinib is out of my system. Is your hubby on blood thinners for the a-fib?

[kgrant1741 in reply to Abc123qaz]

No. He is now on acalabrutinib; and no longer has experienced a-fib. When he was on Ibrutinib and once the a-fib began he was placed on a beta blocker; never a blood thinner. He has always stuggled with platelet counts therefore a blood thinner would not be a likely choice.

[Abc123qaz in reply to kgrant1741]

Thank again.

[Thundercat2]

Hi Abc123qaz,

I completely understand what you are going through. I had an Afib episode about 8 years ago and that was when they also dx me with CLL. Just underwent therapy on a trial of Obinutuzumab and Ibrutinib this spring. My results have been great although I had much joint pain with Ibrutinib. 3 months after being on it I had another Afib episode too so they took me off the Ibrutinb. Currently I am in remission but now I have pretty constant heart palps and atrial flutter at night which has made it hard to sleep. Otherwise I have been feeling good.

I will likely have to return to some type of therapy somewhere down the road so I will be interested to hear how you are doing. Have you had Afib before? Wishing you all the best in finding a good path to feeling better. You are not alone in that quest if that is any consolation!

Thundercat

[Abc123qaz in reply to Thundercat2]

Hi, thanks for your info. Yes, I was given a beta blocker for a-fib 6 yrs before being diagnosed with CLL . I was treated with Obinutuzumab and Chlorambucil 4 yrs later in 2017 but relapsed in 2020 and was given Ibrutinib in Feb. A-fib than went out of control and after having an angiogram I was put on Rivaroxaban to prevent clotting and stopped taking Ibrutinib. I’m now feeling quite well apart from a few swollen lymph glands.

But, I am worried about starting new treatment of Venetoclax and Rituximab.

Thanks again for your support.

Eileen

[Thundercat2 in reply to Abc123qaz]

Absolutely Abc. It's good to hear others stories, it gives us some perspective at least. I worry about the next steps as well, but try hard to live one day at a time. I have heard a lot of good things about Venetoclax so hopefully that will work just fine for you (and me potentially). And maybe your dr. will decide against the Rituxamab, but I don't think that has much side effects of A-fib anyway. Stay positive and keep us posted on your journey.

We are all in this together!

Best

TC