Ongoing Cough

[Gustac]

This is an update on my husband’s cough. My husband has now been off Imbruvica for a month and still no improvement w/his cough. He will be off for another month yet due to getting his COVID shot. By that time, he will have been off for two months. He will then restart at a lower dose. He has seen a pulmonologist several times, but he doesn’t seem to have any new ideas as to what to do?? This is frustrating! Has anyone experienced this? Ideas?

[cnickeas]

You might need a different med. I started with imbruvica, then went to acalabrutinib. I’m now on zanabrutinib. Needed to make the changes due to side effects. Not a cough, but others. Ask your dr

[81ue]

So many things can cause a cough, as you know. One example, I get a cough after a day of being in the same room as the cat. The cough is there at night each time. Not there if I don't have the cat in the same room for the day. Is it possible there's allergy to something in the air that the allergist didn't think of (seasonal pollen, fungi, anything different)?

Two, this example basically points to continuing the search and not giving up for the answer. Someone I know eating healthy and active who never smoked had a constant cough and throat clearing habit and couldn't find the issue with the doctor. Eventually it surprised everyone when a doctor finally found the cause was lung cancer and thankfully it was found on time. Keep pushing for the answer.

This site has more ideas on what causes phlegm/cough as a sign of underlying conditions medicalnewstoday.com/articl...

[annmcgowan]

Hi I had a cough for 18 months on ibrutinib. An endoscopy showed it was due to gastric problems, treated and resolved now. Still on ibrutinib and doing well. Has your husband had this route investigated?Ann

[bennevisplace]

A similar issue was posted here 3 years ago healthunlocked.com/cllsuppo...

I was treated with FCR and have had an intermittent chesty cough for the year or so since. I've been tested for Covid19, CMV, EBV and adenovirus. Cause still unknown, but I suspect a resident infection that will not clear while I have hypogammaglobulinaemia.

What are your husband's cell counts?

Let me know if and when you find the cause.

Best.

[Smith123456]

does he take any blood pressure meds? some of these cause coughs

[lankisterguy Volunteer]

Hi Gustac,

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As 81ue and bennevisplace mention there can be many causes for coughs for people with CLL. We are immune compromised, so there are many possible infections that could be involved instead of Ibrutinib.

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Soon after my diagnosis I contracted Whooping Cough / Pertussis in California, (and probably transmitted it to innocent people in Turkey while I was vacationing there). A few years later I had Pneumocystis webmd.com/hiv-aids/guide/ai....

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In both cases, traditional doctors dismissed those possibilities since adults with normal immune systems rarely get them.

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The doctors are taught to look for common causes, but with CLL they need to think outside that box.

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I often make a joke that doctors are taught that when they hear hoofbeats they should expect horses not zebras. But we CLL patients are zebras. LOL

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Len

[Graham2222]

I had to give up ibrutinib permanently, as my persistent dry cough was drug-induced. I’ve been taking steroids long-term (Budesonide inhaler) and this has completely cleared it. I have a review this month.