5 months on Ibrutinib with side effects - CLL Support

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5 months on Ibrutinib with side effects

mouseygirl
mouseygirl

My mum started Ibrutinb and seemed to be getting on OK for a while. She recently had palpitations and chest pain so was checked. Her heart is fine but her Dr took her off Ibrutinib for 2 weeks at this time because he said her neutrophils were low.

She started the tablets on a lower dose this week and last night she had the dreaded palpitations again. My mum has a history of digestive issues as she has a hiatus hernia too so we are wondering if it could be this?

Has anyone else had chronic digestive issues and does this resolve? It's been a journey with one thing after another. Now the low neutrophils. I'm scared her body is rejecting the treatment.

Any advice would be so appreciated.

23 Replies
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lankisterguy
lankisterguyVolunteer

Hi mouseygirl, -

Your profile is blank, so I must guess from your word choices that you are in the UK. And your mum seems to have a complex medical history that may take far more medical expertise than we can or should advise. So you need to be proactive in advocating firmly and respectfully with the NHS or Consultant to get help /guidance from a CLL expert.

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In my own case, going through a similar sequence with Ibrutinib- when I restarted after a pause and the symptoms returned, my CLL expert decided to immediately stop all Ibrutinb and that Venetoclax would be my next treatment. But your mum's case needs to be reviewed in depth by someone that has a thorough understanding of NHS procedures and her medical history.

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Len

Hi lankisterguy ,

Thank you for the reply. Yes we are in the UK.

Of course I understand this is a support forum and not medical advice. It's hard at this stage to understand if this is a symptom that will resolve or whether there is a problem. All the blood work is looking good but this very sudden onset of heart and chest issues is a worry. Which is why the dose has been lowered. Thank you for taking the time to reply.

lankisterguy
lankisterguyVolunteer in reply to mouseygirl

I am guessing that the heart pallipations are what the doctors call Atrial fibrillation (Afib or AF) - here is an explanation: cllsociety.org/2018/02/afib...

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Here is a cllsociety.org video of Dr. Mato of Memorial Sloan Kettering talking about afib in Ibrutinib patients. cllsociety.org/2017/08/iwcl...

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Here is a similar video and a NIH paper on ibrutinib and afib, but much of the wording is in "MedSpeak" so you may want to share these with your mum's doctor:

youtube.com/watch?v=6ibGdsN...

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

ashpublications.org/blood/a...

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Len

Thank you so much lankisterguy

Newdawn
NewdawnAdministrator in reply to mouseygirl

Hi mouseygirl,

I was on Ibrutinib for over 15 months and developed tachycardia (very high heart rate) only days after stopping it. It’s important to stress that heart palpitations/racing heart cannot automatically be assumed to be AF as explained by DelrayDave below. The doctor who examined me made it clear my heart trace was not showing signs of AF (however I’m waiting to see a cardiologist).

‘During atrial fibrillation, the heart's two upper chambers (the atria) beat chaotically and irregularly — out of coordination with the two lower chambers (the ventricles) of the heart. Atrial fibrillation symptoms often include heart palpitations, shortness of breath and weakness.’

As I understand it, palpitations can be a part of AF but not necessarily lead to a diagnosis of AF. Your mum needs the services of a good cardiologist to ascertain the cause. Unfortunately ibrutinib does have a significant cardio toxicity rate but anxiety and the distress acid reflux can cause does seem to contribute to it.

Hopefully the haematologist and cardiologist will liaise to discuss future treatment options. I’m on the Ibrutinib and Venetoclax trial so have continued on the Venetoclax and my GP has put me on beta blockers for the tachycardia.

Hope all goes well,

Newdawn

mouseygirl
mouseygirl in reply to Newdawn

Newdawn Thank you so much for this great reply. I really appreciate it. I'm happy to hear there are options if my mum can't tolerate Ibrutinib. She is just waiting now to see her cardiologist.Thank you for the info, and best wishes.

Catnap7
Catnap7 in reply to Newdawn

Catnap7 here. Yesterday in my 24th month on I and V trial they stopped my Ibrutinib but not the Venetoclax Been sick for 3 weeks with all signs and symptoms of Anemia including palpitations

BP and HR got so high they put me on Beta blockers also I really am hesitant to go back on Ibrutinib. Do you know if the tachycardia issue(as I have it also) is permanent or will it be better when Ibrutinib is removed for good ?

Also...do side effects from I and V normally show up at the begging middle or end of the trial? Or is there really no info on that ? I am MRD since month 11 of my 2 year and 3 mo trial

Catnap7

Newdawn
NewdawnAdministrator in reply to Catnap7

Hi Catnap,

I’m not sure which country you’re from or which trial you’re on but I see you’ve reached MRD. Is that UMRD from peripheral blood and BMB?

You’d need to discuss this with your medical team but I’d be surprised if you’d be re-started on Ibrutinib after this adverse event when there’s so little time left on the trial.

I had Ibrutinib stopped after 15 months due to severe arthralgia and myalgia. Inexplicably the tachycardia started 4 days later and I was hospitalised overnight as an emergency. There’s been no suggestion of me restarting Ibrutinib but in truth my haematologist hasn’t even discussed this with me. Apart from a call from the specialist nurse they haven't even pursued the cardiac issues presumably because I’m already off Ibrutinib.

My GP has been dealing with issues for me.

Issues can occur at any point in the trial and I’m wondering if your anaemia is a factor in this? There is certainly a known link between anaemia and palpitations. If they’ve taken you off it and kept you on Venetoclax, I wouldn’t be concerned especially if you’ve reached MRD status.

As to whether tachycardia subsides, it really depends what has caused it. I’m hoping mine will stabilise now on the beta blockers. Hope yours does too.

Newdawn

Catnap7
Catnap7 in reply to Newdawn

Thank you Newdawn My trial is for relapsed CLL inUSA

I was told I am MRD in both blood and bone marrow. I had palpitations 8 mo ago when I was freaking out about Covid. Cardiologist put me on a monitor and it came back Ventricular Tachycardia They just now put me on the Beta blockers because my BP went up It has always been low

Anyway I am grateful for Ibrutinib or I would not be where I am

Best to you and hope you get your tachycardia issue under control with the medication... and I hope you can get off those also. Do you notice a big change in your muscle and joint pain now that you are off Ibrutinib?

Newdawn
NewdawnAdministrator in reply to Catnap7

Sadly the joint issues are still pretty bad but I had pre-existing arthritis so it’s a permanent feature for me I’m afraid. However, the muscle and cramping is reduced.

Best wishes going forward 😊

Newdawn

Catnap7
Catnap7 in reply to Newdawn

Best to you too 🐈

Ibrutinib is known to cause AFIB.

Don't know if this applies, had to go off Ibrutinib because developed A-Fib. I have had digestive issues for many years but the Ibrutinib didn't create an issue.

mouseygirl
mouseygirl in reply to ballynb

Hi ballynb sorry to hear that. Have you had any other treatment after this happened?

ballynb
ballynb in reply to mouseygirl

Yes I have been on Venclexta for two years this month.

My hematologist told me that imbruvica could cause palpitations and if I experienced them for more than a few minutes and for three days in a row I should call him because this could be a serious side effect of the medication. I presume he would then take me off imbruvica, at least for a while. Hope this helps and good luck to your Mum😊

mouseygirl
mouseygirl in reply to Snoopy234

Hi Snoopy234,

Thank you for the reply. Yes my mum has received the same advice. Best wises.

Hope all goes well with your Mum. Six weeks ago, when I was about 10 months into my Ibrutinib journey, I had what I thought was a severe episode of A-fib. I was camping with my horse in a remote area, alone in my camper and out of cell phone range. That was quite a stressful several hours until the issue resolved. When I got back home I wore a Zio Patch monitor for 7 days; the Zio recorded numerous episodes of PSVT (heart rate up to 210 bpm for a short time). The extended palpitations and related symptoms that happened while I was camping did not recur while I was being monitored. I am still on Ibru but being monitored by a cardiologist. My onc is doing a 'wait and see' -- so I hope he's right. PSVT is not fun...

mouseygirl
mouseygirl in reply to MN1999

Hi MN1999,

Thanks for the reply. No it's not fun. This is the outcome too for my mum. They are waiting to see. Her heart has been checked and everything normal thus far. It's annoying as like yourself it just sort of came out of the blue?!

Because it is known that ibrutinub causes atrial fibrillation, it seems normal to assume that the palpitations are afib. But they may not be. They may be completely harmless, like premature atrial contractions or runs of these, called atrial tachicardia, which are also harmless if they stop on their own, called paroxysmal atrial tachycardia. The only way to find out is a monitor. A cardiologist or a cardioelectrphysiologist is the doc who deals with these.

David

DelrayDave that's so helpful, thank you. she is in good hands so I guess time will tell. I hope it will pass.

Hi there,I am in the UK, and have been on Ibrutinib for 21 months and doing fine.

Last week I had palpitations on one day and informed my contact nurse straight away for advice , the Oncology department wanted me to attend where they took my blood pressure which (after the stress of finding the department in these COVID times ) was up and registering 114 beats.

I had my usual CLL blood test plus an ECG and they kept me in hospital overnight to monitor my blood pressure, I had a blood test to confirm there were no clots in my lungs as a matter of practice an my ECG was normal.

The following morning another ECG was taken showing 1 spike in my sinus rythm - but the Dr was not overly concerned as all tests were normal by this time and she said it is quite normal for people to have the odd spike anyway. I was told to have an Ibrutinib holiday for 1 week and she has asked for me to wear a 48 hour tape and echo machine to monitor my heartrate. I was then discharged and allowed to go home.

I asked wether it would affect my CLL and she said because I have had stable blood results continuously and the Ibrutinib will stay in my system for a few days after my last dose it would not cause an issue. They will discuss the way forward as far as medication is concerned and inform me this week, and I have a follow up appointment in 3 weeks to discuss the ECG results and the way forward.

I hope this helps in some way to hear someonelses experience.

Stay safe

Brenda

mouseygirl
mouseygirl in reply to retired46

retired46 Hi Brenda, Thank you for taking the time to reply.It most certainly does help to hear other peoples experiences. My mum has settled for now and on a lower dose until her next appointment in 3 weeks. I'm hoping it was anxiety as my mum is prone to that and absolutely hates taking a pain killer let alone Ibrutininb.

Best wishes to you

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