Ibrutinib after 6 years update

[guyhighlander]

Hello, just like to make an update for Ibrutinib ,after 6 years taking 280mg/2 pills

In the beginning some little problems for 2 month,like burning red face,and after taking only 280mg/2 pills everything works fine for me, no Problems at all for years

and still could worked as builder until 2020.

This January 2021 realized major fatigue while walking or going up stairs.

While had my quarterly checkup mid January, CT discovered Pericardium, and my Oncologist Dr. Schmidt in Munich send me straight away to the Heart-hospital.

Staying 3 days in hospital with several checkups,unfortunately i had atrial fibrillation on top.

During this time stopped taking Ibrutinib (4 weeks)

and have to take blood thinner and pills to stop infection, after 5 weeks everything looks good . No infection and atrial fibrillation, but on medical ultrasound had some little things on coronary vessels (cardiovascular)

Now I have to do an cardiac catherization in Heart-hospital, and will see what happened. Still having heavy fatigue and still struggling what caused the infection.

Last one was 18 month ago.

Oncologist Dr. Schmidt means can't come from Ibrutinib, an if it will be in beginning and not after 6 years.

My neighbor, has to stop Ibrutinib after 4 weeks while having heavy heart problems, he is now on Venetoclax.

I am 61 and did sport my hole life, my body tells my I am getting old and not even to do a walk makes me little bit sick on top.

Managed convid very well so far, less contacts and if wanna meet somebody

staying outside and have a little chat.

Sorry when its not the best grammar , English is not my main language

hope you all stay strong and fight

cheerz Wolf

[studebaker]

So sorry for your heart problems. I don’t know if they will find out that, the culprit in your case was Ibrutinib. I think, it has been well documented that longer you stay on Ibrutinib more cardio toxicity possibilities.

I was on Acalabrutinib for 8 months when really bad Atrial Fibrillations 5 days apart rushed me to Emergency. They tried to control them with drugs for hours and my blood pressure was sky high, I had cardio version. That took care of AF, but my blood pressure, especially the diastolic is still high and difficult to control by my cardiologist.

Now, I just started Venetoclax second ramp up and so far so good.

I wish you the best of luck with your heart problems.

Dana

[Catnap7]

I was on Ibrutinib/Venetoclax A month before my 2 years were up I was taken off

my 280/2 pills for a high BP (I never had that before) and for S V Tachycardia ( never had that before)and palpitations.... I think I had the palpitations for a year. When I went off Ibrutinib it all went away and never came back

That was just my cardiovascular experiences with Ibrutinib.

Love/Hate relationship for me

Best to you

Catnap7

[Lawand1]

Gruss Wolf,

Like you I’ve been on Ibrutinib for six years. I was on 420mg but almost a year ago we reduced to 280mg but found possible progression just before Christmas. We went back to 420mg and within 5 weeks my lymphocytes went back down! I have a colleague in Dortmund who had strong heart issues with Ibrutinib but has been on Venetoclax successfully for four years.

Best wishes!

[guyhighlander in reply to Lawand1]

yes I know, in beginning of taking Ibrutinib it can corse heart problems ,from searching net and my neighbour, but after six years its strange, will see if the palpitations coming back before I having my ablation or doing another ECG recording to find out.can't remember last 6 month having flu ,cough or major infection.For how long he's taking Ibrutinib ? Wolf

[Lawand1 in reply to guyhighlander]

My German colleague was hit hard with Ibrutinib within the first few weeks! Thankfully the Vclax has worked incredibly well for him. Is Vclax an option for you?

[guyhighlander in reply to Lawand1]

Thank you more details , I guess so, will see the outcome over next 2-3 weeks and discuss with my oncologist in Munich and of course my neighbor for more details.

Danke Wolf 👍 😜

[PAgrandmom]

I am 80 and have been on Ibrutnib for four years with no problems. It is one of the medication aide effects that causes fatigue. But I have had excellent results with Ibrutnib for keeping my NHL arrested.