My husband has been diagnosed three days ago with pleural effusion and is due to have it drained in a weeks time. He's been on the Flair trial with ibrutanib for three years and generally has done quite well on it, with a couple of blips. He's had to come off it in preparation for the procedure. The pain he's experiencing is intense, particularly lying down at night. Does anyone else have experience of this and what pain relief can he use, he's only just stopped the ibrutanib last night. He was diagnosed with pneumonia back in April and has had two courses of antibiotics but until they test the fluid they won't know what has caused this condition and of course the worry is that it is a progression of the CLL. I don't know how long it is until the results of the procedure come through.
He's had pain in the right side of his chest for quite a while, was checked by a doctor on our unit two weeks ago, who said his chest sounded clear. How can that be when the chest X-ray shows nearly half of his lung as 'white'?
Has anyone else had experience of this, I'd appreciate any advice, it's awful seeing him suffer. Thank you for reading this.
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Poohey
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sorry to hear about this. Pleural effusions can come on quite quickly so I'm not surprised that it wasn't picked up 2 weeks ago. Hopefully, he'll get the results soon and it's related to his pneumonia so won't recur.
Hi Poohey, It sounds like a pleural effusion from pneumonia. Can’t they drain the fluid by thorancentesis or pleural tap. A pleural tap should drain the fluid and help ease the pain. Can’t he get this sooner than one week? Can you call them and ask for it sooner? They may be able to fit you in sooner if he is in this much pain. That tap should help that’s what I would try.
The cells from the fluid can be analyzed and put through flow cytometry to look for any leukemic cells or any other diseases. They can even culture it to look for bacteria. Did they get cultures of his sputum to see if bacteria is susceptible to the antibiotics? I would ask doctor those questions . That should be done in 48 hours at least in the states.
I would take him back for the tap. Isn’t there an Emegency Room?
Did the treatment help lower his WBC count at all this time?
He never smoked did he?
I never had this myself. But more details might be helpful.
Good luck and sorry I couldn’t be of more help. I hope he gets some relief.
Poohey, I was hesitant to reply because I had something similar but maybe worse at the end of last year & don’t want to frighten you.
I had been on Ibrutinib for two years at the time, & don’t believe this condition was caused by CLL.
As you say, the pain down the side was incredible. So much so that I went in via emergency and was out of it most of the time, so am probably not a good witness to report on what actually happened.
But to quote from my hospital discharge papers the initial diagnosis was “left lower lobe pneumonia with empyema requiring decortication and thoracostomy”.
Reading from the hospital papers I had four procedures in all: pleural drainage, venous access picc line insertion, left thoracotomy + decortication, and left pulmonary decortication. One of those procedures took four hours & the surgeon told me he had to break a couple of ribs to gain access.
Most of the time I was in a fog but do remember waking up once with my haematologist sitting next to me holding my hand. I came out of it OK after five weeks in hospital including one in ICU. I lost 8 kg weight. Six months later I’m well but still have post-op pain maybe due to the ribs, & on pretty serious hydromorphone meds.
The good news is that it all definitely saved my life, plus I’ve gained back my lost weight, and with restarting Ibrutinib a week after the last operation my CLL & blood counts are all fine.
I feel horrible telling you all this, but hopefully it shows that even a real worse-case scenario is fixable. Hopefully your husband will just need a more simple drain procedure.
My husband was on Imbruvica for 8 months till it caused AFIB. Hematologist took him off it then he caught the flu even though he had the 4 strain shot and got a serious case of pneumonia which ended with Plural Infusion. He had over 600ML of fluid drained and then 3 X-rays weeks apart which showed fluid still under his left lung. We were told the fluid is under his lungs. We are waiting to her from the Pulmonologist for his opinion. Hematologist told us it can take time.Waiting to start new treatment hopefully till fall.
Sorry to hear that your husband is in pain from pleural effusion. I had that several years ago, went to the emergency room, got antibiotics, went home and recovered well. I don’t believe in living with pain if there is an alternative. Can you go to the emergency room?
As an aside, I had pericardial effusion this spring associated with coxsackia b virus. They checked the fluid and there were a few cll cells in it. My hemotologust said that the cll cells would be expected but that if was not the cause of my pericardial effusion. As it turns out, it was a virus and I recovered fully.
I would have had to wait a week to get drained if I had not been admitted to the hospital. After a week, including 2 data in icu and surgery to make a pericardial window, i spent another 6 weeks recovering. Doing great now.
Hope your husband is feeling better soon. It is painful. Pain medicine until treatment helped me.
Wishing you and your husband a quick and full recovery!
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