6 weeks on Ibrutinib and I am having slight periodic chest pains and shortness of breath .... many time a day...

[fish61]

I attribute it to the fatigue that is a side effect.

After speaking to a retired MD friend of mine he advised me to write to everyone to see if this is the same type of reaction they get from this product ?

He also advised a almost immediate visit to my Cardiologist.

Will see the cardiologist tomorrow any thoughts?? fish 61.

[sparkler]

Hi fish61

I don't want to appear alarmist but with the symptoms you describe, I would advise that you don't wait till tomorrow to seek medical advice. I think you should do it now.....even though I am no medic.

sparkler x

[Mikey47]

Hi Fish, you must have started on the trial about the same time as me.

I haven't experienced any chest pain so I would suggest you get straight to your Dr.

[HAIRBEAR_UK Founder Admin]

Chest pains require more immediate attention (speaking as a cardiac patient). You mention you can visit your cardiologist, are you already a cardiac patient? if so can you telephone?

Nick

[bkoffman CLL CURE Hero]

Chest pain associated with shortness of breath in any man old enough to have CLL is a medical emergency. It may be just a variation on heartburn, a common side effect when starting on ibrutinib, but you should get it assessed immediately to make sure it is not cardiac. Like now.

[luckyguy1940]

I been taking Ibrutinib for three years and have never had the symptoms you describe. In addition to the advice you have already received, I would get on the telephone with my trial site and discuss this with them.

[Hidden]

Hope you are ok Fish61. Thinking of you, let us know how you are when you can.

Bub

[Berrytog]

Hi Fish 61

I am about to start my fourth cycle of Ibrutinib and have not experienced this symptom, however if I go out in the cold/damp air or walk past trees or undergrowth holding damp like conifers then I can get your symptoms. As Brian says Gerd/Gord can produce breathlessness particularly when leaning forward or lying down, but get it checked straight away, it could be a chest infection lingering , better safe than sorry.

[fish61]

Guys thanks for all your comments ... today I see my cardiologist then the endocrinologist (Have hypothyroidism)

Tomorrow I see The nurse and md at Md anderson about Ibrutinib and then The lung Md.... I am going to get to the problem asap. You can bet I will be fatigued by late tomorrow.

Gerd/gord have partially hit the nail on the head as it happens when I bend to pet the dog,over 80% of the time

I get that damn heart jump... fish61

[ThreeWs]

Hi fish61,

All the advice about seeing a cardiologist is indeed valid. The shortness of breath could be due to atrial fibrillation or related heart "electrical" malfunction. While Ibrutinib may not be a direct cause for heart function issues, it may exacerbate an underlying problem. In my own case I went on Ibrutinib after first experiencing A-Fib following 1st TX with FR and later with Rituxan monotherapy. These experiences plus my congenital bradycardia (slow pulse) when meeting up with Ibrutinib, most likely pushed me into more dramatic arrhythmias and tachycardia (high pulse) events. Ibrutinib lowered my "normally" low heart rate into the danger zone causing a failed recovery attempt resulting in tachycardia and increased A-Fib events. The good news is that I was able to stay on Ibrutinib by avoiding blood thinners such as Warfarin through getting a pacemaker and AV node ablation, totally eliminating all A-fib events and tachycardia to date. The fact of your chest pain, which I did not experience, suggests a warning sign of angina and a deeper level of concern.

Good luck in resolving this issue.

A parting thought and questions to ask your cardiologist: I am guessing at this point on insufficient info but if your shortness of breath is due to A-Fib you may face a left atrial ablation to address this problem as that is the most common and high risk area of the heart for causing clots. An ablation of the left atria will most certainly require longterm blood thinning with Warfarin (Coumadin) which will get you kicked off Ibrutinib. If this is a path you would rather not go down and you get lucky with a low enough CHADS2 score you have other options that can keep you on Ibrutinib. Write me if I can be of help in suggesting options or questions to discuss with your Docs.

WWW

[fish61]

Everyone , thanks for your responses... I had my Defibrillator completely emptied today and it showed that it is not as a result of any cardio related problems..... it is simply a question of excessive water loss.... somehow ( I will find out tomorrow ) the raft of other drugs that I take combined with the Ibrutinib caused dehydration ... to be perfectly blunt , the cardiologist said ..."You may get hit by a truck and have your heart stop" but barring some outside influence you are not going to die of a heart attack" Great stress taken away... I saw other specialists and they both said " Good luck in your visit with the Cardioligist " They knew it was related to cardio but only the cardio was able to diagnose ( I might add after an Hour of discussion )

So . in a nutshell, if you are taking a ton of b/p and prostate pills .... Drink beyond your capacity.

Thanks again for your thoughts Fish 61

[Hidden]

That's great news fish61.

So pleased for you, that you can carry on with ibrutinib.

Thanks for keeping us posted.

Bub

[aussiejo]

Good news fish61.

the juggle of CLL and other problems ! !

So good to read your posts that you can move forward.

Aussiejo