Hacking cough

[Juryn4]

Anyone with a hacking cough ? Have been on ibrutibin for 4 months and a cough for 21/2 weeks. It's horrible any suggestions. All lab tests have come back normal as well as chest x-ray.

[Cllcanada Top Poster CURE Hero]

Cough is listed as a rarer Imbruvica (ibrutinib) side effect...have you discussed this with your CLL doctor?

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[Juryn4 in reply to Cllcanada]

Yes. Informed oncologist. After all tests done and are negative doesn't seem too concerned . Most likely from ibrutibin. Follow up Appt next week. Thank you.

[Shortcake2]

I did all the coughing for 4-5 months and it turned out to be my BP meds. Changed meds and cough went away. Hope this helps.

[splashsplash]

I had a productive cough for 5 years once and all tests came back negative and none of the common antibiotics worked. When I insisted on being referred to the chest clinic they did a biop and found 5 specialised anti biotics that worked in a petri dish on my particular results. The second anti biotic actually worked out of the petri dish and I stopped coughing after 5 years! Hope that helps.

[Pepper122]

I had acid reflux for some time before I was diagnosed, the main symptons being a persistent cough. Got worse during all treatments, including ibrutinem. I've been cancer free for a couple of years due to ibrutinem and superior medical care at Ohio State and West Palm Beach. A few months ago, my coughing stopped except when I eat certain foods. Part of the problem with medicine is that you take it when you're sick and you immune system is weakened. Good luck with your treatment!

[Juryn4]

Thanks. taking prilosec daily. Cough Probably due to ibrutinib. I do find myself coughing more after eating. Never have had an acid reflux issue before.

[Michaeljohn50]

I am in w&w, since 2002. I had a debilitating cough last autumn; I had to abandon the gym, gardening etc because I coughed so hard that I was finding it very difficult to breathe. I had 3 lots on antibiotics, a chest x-ray acid reflux meds and more. My GP(s) were unable to offer a diagnosis or cure. However, my oncologist suggested that I might have Bronchiectasis and referred me to a respiratory consultant. A CT scan confirmed the diagnosis but before targetted treatment started I did sputum tests which revealed a bunch of infections in my lungs. The respiratory consultant then asked my GP to prescribe 14 days of antibiotics as in his experience lung infections frequently do not respond to seven day treatments. I still have a cough but am much improved. I will see the respiratory consultant in a few weeks to take stock. Maybe this will help in some way!

Michael

[JWalker]

I've been on ibrutinib for a month and had a cough and shortness of breath before starting. This only got worse over the next three weeks as well as worsening hemoglobin count. X-rays showed negative for pneumonia so a CT scan was done which did show pneumonia.

I have turned the corner and am feeling better with steroids and antibiotics although the pneumonia could very well be viral rather than bacterial.

I am now on pins and needles unsure whether this turnaround is only temporary and concerned that the lung problems are related to the ibrutinib and will return. My oncologist tells me to stay the course and give it at least another month before we begin thinking that this treatment is not right for me.

I hope you improve quickly and find relief from this stubborn cough.

[Juryn4 in reply to JWalker]

Thank you, you as well. All tests showed up negative took a course of antibiotics. No difference. Just waiting for things to improve..I hope

[Lola69 in reply to Juryn4]

Who prescribed the antibiotics and why?

[Justasheet1 in reply to JWalker]

Have you seen a Pulmonologist?

Jeff

[mnmnewtons]

Could be CLL infiltration and fluid buildup in the lung sac (not in lung). Need for CT scan seems obvious. Check out pleural effusion which happens with CLL.

Malcolm

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[Davejudr]

I have been told in about 24% of us it is a side effect like you all tests are negative. Have been coughing about 10 months. Nose runs like a faucet .nasty stuff I cough up.however. my cll is controlled. Other than dry skin and a rash that breaks out like poison ivy that comes every 3/4 months I guess I will have to live with it. Could be worse. Agent orange caused mine.l

[Jm954 Administrator]

Hi, I was coughing up gunk for the first few months on Ibrutinib, mainly in the morning, and it stopped after about 8 months. I was told it was due to the Ibrutinib and no treatment given.

[Yvbb in reply to Jm954]

Can anyone explain to me what is the rationale behind coughing as side effect of Ibrutinib? I have this exhausting cough since summer. I started Ibrutinib in Sept ‘17. Frequent sinus infections. Sputum showed lots of Haemophilus influenzae bacteria, so I finally got amoxicillin for 14 days. It helped, but after finishing this bout of AB the coughing came right back.

My consultant said that it’s probably the saison and people around me with infections that affect me easily. Never mentioned it as side effect...

I am in CR after 18 months of Ibrutinib and 12 months of that combined with Venetoclax.

Yvonne

[Jm954 Administrator in reply to Yvbb]

I don't know why some people get an expectorant cough, which is generally only first thing in the morning. Like most of the other side effects it disappeared after a few months for me.

Great to hear you're in CR

[Lola69]

I cough but I am a smoker but this cough may be related to the imbruvica. Does your cough sound like a seal? mine used to wake me up at night but I would drink some water and fall back to sleep.