Venetoclax and coughing (a lot)

[carolly]

Stop reading now if you are a bit sensitive…. Since I started Venetoclax (in July) I have coughed and coughed up as well as had sinuses absolutely full of alternatively green and brown mucus. I cannot believe the huge amounts I am coughing up. Although I did have an early bacterial infection, subsequent samples are pretty much negative. Is this usual? I have never had a temperature but to be honest I am just fed up with it. It’s so bad my 1 year old granddaughter has started mimicking me coughing with her hand over her mouth (massively cute). Thanks

[SofiaDeo]

This sounds like there might be a continuing infection, and since bacteria has been "ruled out" I wonder if fungus has been tested? Or an atypical AFB bacteria like Nocardia, which is present in soil but doesn't usually cause problems outside the immune compromised.

[carolly in reply to SofiaDeo]

Thank you for flagging that possibility up. I’ve had a chest x-ray (nothing) but have got a CT scan next week before I see my haematologist. Would anything show up on that?

[SofiaDeo in reply to carolly]

A CT of the chest area generally shows if there are lesions or bleeding or pockets of fluid, and can show things a chest X Ray may not. A pulmonologist may also want to do a bronchial washing or brushing to collect sputum from deep in the chest. It's possible for regular, coughed up sputum to be culture negative, but positive after a deeper specimen is obtained. The CT would pinpoint the areas best suited to get a deeper specimen from. The CT may also show there is a more general spread, superficial inflammation of the lungs as opposed to any "pockets" of anything which you wouldn't see on an X Ray alone.So I imagine they will first try to see if this is a generalized versus specific problem area involvement, then proceed from there. I am making this statement based on what I saw docs do, when I worked in a microbiology lab. The colored sputum made the docs think there was some sort of infection, they kept testing more and more to figure it out.

Remember with CLL, you will be in the "harder to shake off an infection" group. IDK if they are testing your immune globulins, and if they are low, perhaps simply doing IVIG will help you clear up "whatever". Remember most antibiotics don't 100% kill everything, we have to do the last bit ourselves.

FWIW, my last experience with chest CT was when I had clear lungs but was coughing severely and could taste blood. My chest CT showed some granular opacities, not as severe as usually seen then with Covid (this was Oct 2020). They monitored the lesions and ultimately determined it was a combination of external irritants so the diagnosis was ultimately a "mechanical pneumonitis". But I remember the pulmonologist saying if the nodules didn't resolve quickly, he would consider an early infection of an atypical AFB like Nocardia, although he stressed these were most typically seen in really ill folk, like those in the ICU. I didn't have sputum production so they didn't think it was an infection.

[carolly in reply to SofiaDeo]

That’s really helpful, it’s gives me a starting point to discuss at my appointment. Thank you.

[noeagaman]

I had something similar going on a while back which 5 different antibiotics would not clear up, so a pulmonologist did a bronchoscopy and it turned out to be a fungal infection. They knew right away how to treat it then. It cleared up pretty quickly after that.

Chris

[carolly in reply to noeagaman]

Thank you Chris, there seems to be a theme emerging here!

[Big_Dee]

Hello carolly

Had something very similar last summer. Had wet cough and coughed up almost 1/4 cup of phlegm a day, plugged up nose at night. GP prescribed two courses of antibiotics midway through summer. Took a lot of different OTC sinus meds. Whole thing cleared in 2.5 months. Blessings.

[carolly in reply to Big_Dee]

OK that’s reassuring as that sounds exactly like me. Thank you for posting.