Plural Effusion with CLL

[kubie]

Started clinical trial at Stanford, Ibrutinib and Obinutuzumab about week and half ago. WBC was >300 at start now done to 100 and lymph node size decreased significantly!

Problem is CT scan showed large plural effusion at start of trial. Tolerating trial but still very short of breath with minimal exertion discomfort on side of chest with effusion . Anyone had plural effusion? How was it resolved?

Thanks

[lankisterguy Volunteer]

Hi kubie,

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Len

[kubie]

Thanks hawkeagle, glad it was resolved! Did you have less shortness of breath and more stamina after they drained you?

[Haileybury]

Hi, kubie

Yes. Bi-lateral plural effusions when I started on Ibrutinib. Needed several lung drainages as an outpatient. Also had a "permanent" drain in for 3 months which had to be emptied twice a week. It has left me with reduced lung capacity as the lung linings appear to be damaged and inflexible. Good luck to you.

Haileybury

[JeannineMarie]

Kubie, had a plural effusion in 2018, that's how I was diagnosed. Admitted to the hospital for pneumonia. At least that is what they thought it was. Given high doses of antibiotics IV for a couple days followed by 14 days oral antibiotics.

Effusion did not clear. Underwent VATS, 4 days in hospital with chest tube. Still have a funky spot in my lung. However did determine I had CLL/SLL. The spot in the lung remains undiagnosed to this day.

However any type of breathlessness I have been instructed to get to the hospital asap!

[richutchens]

I had it on both lungs. They were needle drained three times coming back each time. Had to have tube drainage surgically inserted. One lung each for thirty days but not both at the same time. Sounds dire but it was really easy. No problems since 2015. Good luck.

[Sepsur]

Very slowly overtime it has lessened- starting ibrutinib seemed to help since it appeared to remove CLL element of effusion ( that may have been coincidental) I’m now 1yr on - I can get slight discomfort on that side. They looked twice at draining it, but it presented as having numerous pockets on scans - they took 2 x sets of biopsies a month apart because they were unsure as to whether it had morphed into a different ( unspecified by docs) lymphoma. Anyway it was just CLL and couldn’t be drained.

[jbctx]

Yes, I was on a trial that included Ibrutinib and Obinutuzumab.

Ironically I was feeling really good and was about to have an Obinutuzumab infusion when I mentioned a little discomfort below my right rib.

Bottom line is things move really fast at MDA, by the end of the afternoon the fluid was drained from the bottom of my right lung. I was shocked, it was painless, quick and somehow produced nearly a liter of fluid.

That said, Obinutuzumab treatment went on hold for a while and I think that’s when Ibrutinib was reduced I all the way down to 140mg per day. Apparently, there is still some fluid there based on last CT scan but it certainly has no impact for now.

Regards,

John

[Feisal]

Hi Kibie. Just wants to mention that about 4 years ago, I got a plural effusion my left lung. Apart from the shortness off breath, I had a weird sensation of 'something' moving in my left side of the chest area when I turned to one side or the other. This may have been the fluid moving around.(Don't remember a lot, I forget a lot of detail which I put down to chemo brain. Great excuse when I forget something my wife asks me to do!) As stated by the very knowledgeable CLL's above, the doctors inserted a needle and attached drainage bag. Took about a day or 2 for me to feel better. The bag was attached for about week while the fluid kept draining. It's a weird feeling thinking all of this is coming out of me. I had 3 episodes within a short period of time, which was scary, because I was wondering how I would carry on with life with a damn bag attached to a needle in my back! If I remember correctly, they couldn't give me a reason for this condition and said it sorts itself out eventually. It did, and thank God, I've been well in relation to this. Best of luck. Stay strong and safe.

[kubie in reply to Feisal]

Thanks Feisal, appreciate your reply. Encouraging that it worked out for you!