No cause found for persistent pleural effusions

Yes - a Rheumatologist at Clev Clinic

Hi ya’ll, so relieved I found this group. My last PET scan in early Nov 2020 showed I was cancer free now after stage IV NSCLC and other tumors. Since my lung cancer diagnosis, Jun 2019, I have had chronic fluid on my right lung. The fluid was tested with the first needle draw, 1,700cc, and found no infection. After 6 needle draws they inserted a catheter in the right lung. My wife is a retired RN so we drain the lung at home every 3rd day per the Dr recommendation. The fluid color has gotten darker, close to black coffee color, and the amount of fluid has remained consistent for the past 10 months at about 500cc. We’re going on a year dealing with this and still no relief in sight. Every Dr, oncologist, we have seen gives us the same “I don’t know what’s causing it” answer and mentions the talc treatment. I have an appointment with a thoracic Dr on 23 Feb, next Tue., and hoping they can provide some answers and recommend treatments. The questions raised in this group are identical to mine and from what I’m reading the talc treatment is not very successful. I really appreciate the honesty here and any suggestions would be greatly welcomed. I don’t feel so alone now, thank you..

I have some questions and am hoping someone can shed some light on them.. When we drain my lung every 3 days we get about the same amount, 500cc. Just prior to reaching 500cc I experience sharp grabbing pains in the lung and have to cough. If I let the drain continue the pain increases but the fluid flow does not decrease. When they were taking the fluid off with a needle they stopped when I told them I felt the grabbing pains. So, we shut the catheter off now when the pain starts? Is the grabbing pain normal ? What causes the pain ? Am I supposed to continue draining until the lung is completely drained ? What are you doing if you have this problem? Would appreciate any input.. Dutch

Sorry you're going through this. Our circumstances seem different, but yes I had some significant pain on occasion. They would take +/- 2 liters at a time from either lung, but a couple times I got a very sharp painful stab at the tap location. They decided not to draw down the fluid so much. Once my BP dropped so low they rushed me into the ER. They began to lower my head as soon as the tap was done to prevent the BP drop. The pleurodesis (talc) seems to have worked, breathing is better but not great. Last CT shows that the pockets of remaining fluid are holding steady or reducing. Good luck.

Thanks for responding and the info. Rob, it helps. I don’t think my BP drops, haven’t checked it, but that could account for why I feel exhausted after we draw. I’m thinking we are only getting about half the fluid off before the pain starts. My breathing is not good but doesn’t seem to improve or worsen after we draw. Looks like we will just have to live with this for the time being and will continue to stop the draw when the pain starts. I’m still undecided about pleurodesis. Hoping to see a thoracic surgeon when we return home next month to further discuss pleurodesis. What color is the fluid when you draw and has the color changed? Mine is dark bloody color and remained consistent, except for when I had radiation on the left lung, and then it turned several shades darker. It has since returned to the previous color. Man, this stuff has sure been a life changer. I even gave up my motorcycle and haven’t been in a bar fight for almost 2 years LOL..Thanks again, take care of yourself.. Dutch

Beware. These pleurex catheters get blocked , can become infected , and very often are taken out .. plus the constant reminder when sleeping or showering .. Also, I had such a horrible experience with surgery for the masectomy , that I m afraid to have more surgery that can be avoided , so I am stuck with thoracentesis for now , in hopes the fluid wil resolve on Ibrance and Faslodfex .