CLL Support Association
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Persistent congestive cough on ibrutanib

Has anyone experienced a long term congestive cough whilst on the Flair trial? My husband has had this for months now, disrupting sleep and adding to the fatigue he already experiences with the treatment. Our GP has suggested using a drug for reflux but on checking it out there are contra indications with the Ibrutanib. He's also on Fluconazole for a previous fungal infection and Acyclovir for mouth ulcer prevention, although he had these again recently.

I'd really appreciate any suggestions to help him with this.

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Earlier this year I had a cough for several weeks that did finally become congestive but it started out dry. I was also very neutropenic. My GP diagnosed it as bacterial bronchitis (educated guess, but right it seems). She gave me 7 days of sulfatrim, and it disappeared swiftly. And I felt great after! Loads more energy. An ongoing untreated infection will drain your energy.

good luck to your husband!

kim

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Thanks so much for that, we will speak to our doctor. My husband is also neutropenia so has been put on injections to boost his immune system.

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Hi, your husband is a complicated case and the coughing may possibly be related to his fungal pneumonia. The best option would be for him to be reviewed by his respiratory physician and if he doesn't have one, then ask your haematologist for a referral to a good one.

I am in FLAIR and had an early morning congestive cough on Ibrutinib and expectorated quite a bit of very sticky, grey gunk every morning for around the first 9 months. It seems to be a side effect of the Ibrutinib from the posts on this site.

Whatever it is, best to discuss it with your haematologist at the next appointment or earlier if you're at all concerned that he's become unwell.

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I've been on ibrutinib 10 months but have had a chronic bronchitis cough for over 20 years. Mine hasn't become worse since ibrutinib, but I recently started asking my doctors about it, now that my CLL is controlled. Both my new CLL specialist and the local doctor made a similar comment to try prevention of acid reflux. They both said that I could have reflux and not even know about it, but it can irritate the esophagus causing extra mucus and eventually cause post nasal drip and lead to a chronic congestive cough. Bacterial and fungal infections can follow.

When I started ibrutinib, I was prescribed acyclovir and famotidine, the generic for Pepcid AC. The instruction was to take 2 famotidine per day as needed for reflux. For many months I had no reflux (at least that I was aware of), so I only took it at 1 per day in the morning, then later dropped to as needed intermittently when I felt reflux. A few weeks ago, I noticed that I was starting to develop a congestive cough, so I started taking 2 famotidine daily, 1 in the morning along with ibrutinib, and one before bed along with the acyclovir.

My cough seems to have significantly improved, so acid reflux may indeed be the answer. Of course, you should follow your doctor's instructions. We CLLers are also very susceptible to PCP pneumocystis fungal pneumonia with our decreased immune response, especially if he has a history of fungal infections. My doctors had reviewed my recent CT scans and said there was no evidence of PCP for me. I've read here that Bactrim is often prescribed for PCP prophylaxis. When I was young, I had a fungal infection that had become resistant to Diflucan (fluconazole).

Best wishes that your husband's cough is quickly resolved. I know how miserable he must be as I've been there so many times.

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Good morning

A very interesting and timely subject. I cannot help but I can concur and I believe your cough is indeed intensified by Ibrutinib/CLL if not caused by it.

After four and a half years on the product with no side effects it is possible that my cough is as a result of taking Ibrutinib but there is always doubt and I reserve on blaming my life saver. for four months and more I have been complaining about a non-productive cough generally brought on by eating or drinking and fresh cold air. My GP, after x-rays, concluded that it was a throat irritation and provided a steroid spray that if used regularly can produce trush but would solve the problem but it did'nt. My haemotology consultant thought that it might be something to do with Ibrutinib but was not sure and made no suggestion for a cure as it was non-productive.

My cough seems to have worsened as winter approaches but nothing that clearing my throat with a glass of water or lozenge would not abate. two years ago, after my bloods had more or less returned to normal I was given a much needed hip operation and a new lease of life making me feel thirty again so I tried to put three years into one, a bad idea as my left hip, having been given six more years is now worn out and last week I should have been having an operation until the day before my GP said they would not give me a general. I rang my admissions nurse who confirmed this and it was cancelled. My hip worsens daily and the anti-biotics prescribed by my GP have made little impact so I am not best pleased as the cough could have been addressed well in advance. For the moment I hobble around in pain on two crutches with the added burden of my household duties as my wife's carer.

So what can we glean from all of this, well, where would we be without our community sharing and advising and the need to be responsible for our own ailments and not taking complacency or no from our medical advisors.

BT

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Whatever the cause of chronic cough, CLL, Ibrutanib, chronic bronchitis, a mixture or something worse, main thing is, what can we do? As a member of the club i offer the following:

Keep well hydrated, alkaline water reduces reflux and or its symptoms, may have other benefits. truly difficult with dry indoors.

Guard against respiratory infection, flu shots, avoid public places, people with cough, sneezes. Dread air travel. Masks quite helpful(m95). Like Vog masks, pricey, but come in more attractive colours. Suspect additional benefit of mask is it makes unconscious hand to nose or mouth contacts less likely.

Clean public utensils, chairs, keyboards, i like alcohol gels. Walk around with a bit of paper, napkin, newspaper, whatever, for handling doors and so on.

i keep a personal humidifier(MyPur Mist) at bedside, especially in winter, it seems to help sooth lungs, throat, during attacks. Must guard against organisms growing in humidifiers.

Reserve antibiotic for bad attacks.

Rather personal and paranoid, but putting these out there, any other ideas??

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