Cough while on Imbruvica?

[Gustac]

My husband (70 yoga) was diagnosed w/CLL in 2017. He had two rounds of guzyva and is now on Imbruvica. His counts are good. He has had a cough (something like chronic bronchitis) for at least two years. In the mornings, esp. he coughs and coughs and coughs up mucus that he needs to spit out. Has anyone experienced this while on Imbruvica, or is it just the CLL??

[cajunjeff]

Coughing is a listed side effect of ibrutinib, so that could be it. Our Cll can make us prone to have lung infections, so that could be it.

Either way, I wouldn’t just let it go. I find from reading on here that many Cll doctors do not treat or pay much attention to these type complaints and are reluctant to attribute it to our Cll.

If I had a lingering cough I would take it up with my primary doctor and push hard to get a diagnosis so it could be treated. Whether it’s related to your Cll or the ibrutinib, it might be treated the same as any other pesky respiratory problem.

If my primary doc couldn’t fix it, I would go to a specialist or pulmonologist. Two years is too long to have a persistent cough. It might be as simple a fix as a course of strong antibiotics. The squeaky wheel gets the grease. I would push for a workup to find the root cause of the cough which might inform how to treat it.

[annmcgowan]

Hi I am on ibrutinib 3 years in and doing well. I had a cough for 18 months. My GP thought it was asthma and treat as such throughout unsuccessfully. Eventually I had an endoscopy,at my insistence.

I was diagnosed with oesophagitis, the cause of my cough. From day 1 of treatment my cough ceased and has never returned.

There can be many causes of a cough so it is worth investigating the causes with your GP and your haematologist.

Good luck

Ann

[lankisterguy Volunteer]

Hi Gustac, -

I agree with cajunjeff and annmcgowan - you need to advocate / pursue your medical team to diagnose the cause of the cough. Because we are immune compromised we can get many different infections, and lung problems are a major cause of death for us folks with CLL. So don't ignore it.

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At one point I was in a clinical trial and contracted Pneumocystis. Here is what Wikipedia says it is: Pneumocystis pneumonia (PCP) is a form of pneumonia, caused by the yeast-like fungus Pneumocystis jirovecii. Pneumocystis pneumonia is not commonly found in the lungs of healthy people, but, being a source of opportunistic infection, it can cause a lung infection in people with a weak immune system. Pneumocystis pneumonia is especially seen in people with cancer undergoing chemotherapy, HIV/AIDS, and the use of medications that suppress the immune system.

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At the time even my wonderful CLL expert doctor dismissed my symptoms (dry non productive cough, and CT Scans showing "ground glass opacity") but later my clinical trial was halted because Pneumocystis was causing fatalities.

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These type of lung infections are now recognized as a side effect of Ibrutinib / Imbruvica and Idelalisib / Zydelig.

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Len

[Graham2222]

Hi Gustac

I had to give up ibrutinib after having a persistent cough for eighteen months. I lost twenty per cent of my lung capacity. It was not a fungal infection. Eventual diagnosis by the pulmonary department was drug-induced fibrosis.

I then went two years in remission before requiring chemotherapy.

As others say, please do get it checked.

[wmay13241]

Did the cough stop after he discontinued Ibrutinib? If so, how long id it take for the coughing to stop?

[Gustac in reply to wmay13241]

He has been off Imbruvica only one week so far, he will be off for at least one month as his oncologist wants him to get the COVID shot and wants him off Imbruvica for his t-cells to build up, with the hope that the shot will be more effective. He also wants him off for a month to see if the cough subsides. So far, no improvement for his cough. His oncologist has also considered lowering his dosage. He has not had an endoscopy. He has had a CT scan of his lungs and was told, his lungs look “very good”. He is beginning to feel very frustrated w/this cough. Thank you for your ideas.