Difficulty Breathing

[pragnar]

I had to stop Imbruvica about 3 months ago because of the side effect. My blood levels are still good (just slightly elevated) but developed serious difficulty breathing about 2 weeks ago. No infection and my doctor is not sure what is causing this. It gets worse with doing stairs or any incline. Any ideas? I had the same symptoms before but that was when my blood levels were critical.

[Cllcanada Top Poster CURE Hero]

Have you seen a cardio-oncologist? They specialise in drug reactions and the heart.

What tests did they run for lung infection? Have you had an Xray or CTscan?

Hopefully it will pass.. please be proactive about this...

~chris

[june65]

I was going to suggest a cardiologist as Cllcanada has done, my husband had a similar

problem after FCR and it took a year to get anyone to listen. Be proactive.

[Graham2222]

I had the same, as imbruvica had caused lung disease and I'd lost lung capacity. You need to be tested. I took a lung/pulmonary recovery course and after a few months was able to breathe better.

[moty3012]

I have the same problem after 3 weeks of imbruvica. dont know what to do. it feels like my nodes got larger after the drug did miracle in the firdt 2 weeks

[Bubnojay]

Did your GP carry out an ECG and take your pulse as most do. My GP could feel irregular heartbeat even though I thought it was back to normal after racing at 120 bmp. The trace off the ECG showed one line that leaped to the top of the chart. Even though I am not on treatment 8 and more years into my cll journey.

Yes all very scary, excessive tiredness and restricted breath were/are my symptoms too. Waiting to see cardiologist.

Be proactive and take Chris and June65s advice, get checked out as soon as possible.

Wishing you well and that this is just a blip due to jibrutinib.

Bubnjay1

[fussybritches]

Interested in the answers to this post. My husband has both CLL and Bronchiectasis. He is taking the full dose of Imbruvica + Co trimoxazole (for infection) and digoxin. He is suffering terrribly with his breathing at the moment and is seeing the GP tomorrow. At present we do not know if it is a side effect of the meds or something else. He has an emergency supply of Amoxycillin, but doesn't like to take them until he is absolutely sure he needs them. Hopefully he will feel a bit better soon!

[pragnar]

I did chest X-ray and EKG both OK. Did another Blood test and my numbers are sudenly spiking. That would probably explain the symptoms with breathing and now anemia. Restarted Imbruvica. I guess I am back facing the ilness. I will consult with my hematologist.

[pragnar]

I believe I might have Angioedema. I had those symptoms before and went away after the first chemotherapy. I forgot all about that.

[Okshigin]

How are you now? My mother is in critical condition because of swelling in her airway. We are wondering if it’s due to the Imbruvica.

[pragnar in reply to Okshigin]

Check with the doctor. It could be Angioedema. I now realized that when my blood count gets worse I get Angioedema. I have restarted modified dose of Imbruvica and doing better at the moment.

[Okshigin in reply to pragnar]

Thank you for responding.