Fluid build up in the lung cavity

Posted by tedvoelker @tedvoelker, Feb 28 9:38am

February 2024 I was diagnosed with stage four non small cell lung cancer that metastasized into my right femur and left frontal lobe. After 2 months of Osimertinib my frontal lobe tumour had disappeared and one of three tumours in my right lung had also disappeared. My radiation was moved up a month as my tumour in my right femur had doubled in size. October 2024 brief stay in hospital was treated as an infection. Since November I started thoracentesis but after the first one had a trapped lung. Spent 19 days in the hospital and over 5 litres removed. Now I get a weekly thoracentesis to drain fluid which has been as little as 350 ml to 1.1 litres. They don’t know why the fluid continues to accumulate. I getting frustrated after 13 thoracentesis, does anyone out there understand what causing this and can I expect this to end in the future. Thank you for taking the time to read this. Ted

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sharilynn | @sharilynn | Feb 28 3:44pm

Hi Ted, My husband has the same cancer and has started to develop pleural effusion that needs draining every so often. Has anyone suggested a permanent drain that you can manage yourself? They have told us that it is from the cancer and will keep happening. I’m sorry to have to share that and sincerely hope someone has a different answer or experience. Best of luck, SN

mally007 | @mally007 | Mar 2 1:26pm

When I was diagnosed with stage 4 lung cancer I also had to have several thoracentesis'. I had pleural catheters placed and did the draining at home. I was fortunate that it didn't cause me any discomfort and my husband did a great job of draining them. I had one catheter in for 8 months and one in for over a year. The last one was removed when my lung had several loculated places and the drain was not able to collect fluid. I felt so much better once the fluid was under control.

Lisa, Volunteer Mentor | @lls8000 | Mar 4 11:26am

In reply to @mally007 "When I was diagnosed with stage 4 lung cancer I also had to have several thoracentesis'...." + (show)

@mally007, welcome to Mayo Connect. That had to be a hard time for you. I had a surgical drain for 10 days (for breast cancer), and I was so happy when it was removed. You're a trooper caring for the catheters for that long. We do what we have to do, but I'm sure you are thankful to be past that. Do you know what finally caused the decrease in fluid? How long ago were you diagnosed, and with which type of lung cancer?

Lisa, Volunteer Mentor | @lls8000 | Mar 4 11:43am

In reply to @sharilynn "Hi Ted, My husband has the same cancer and has started to develop pleural effusion that..." + (show)

Hi @sharilynn , I'm sure this makes the cancer even more difficult to deal with. Not knowing when that fluid will build up likely impacts how you plan your lives. Did he get a permanent drain? Or are they saving that for the future, if the fluid continues?

Lisa, Volunteer Mentor | @lls8000 | Mar 4 12:02pm

Hi @tedvoelker, With 13 thoracentesis procedures in a year you have every right to be frustrated. I'm sure you just want to feel better and get on with living your life.
Here's a link to a pleural effusion discussion.
https://connect.mayoclinic.org/discussion/pleural-effusion/
Unfortunately, the fluid buildup can be common. Is your oncologist following this issue closely? Has the Tagrisso kept the tumors in check?

mally007 | @mally007 | Mar 4 3:49pm

In reply to @lls8000 "@mally007, welcome to Mayo Connect. That had to be a hard time for you. I had..." + (show)

Sorry you had to experience that as well. I was diagnosed at the end of January 2020. I am ALK+. I am so thankful that they figured out how someone can do the draining at home. My right catheter was placed before covid and my left one was placed after covid. It helped in not having to have to go in for a thoracentesis every other week during covid too. My pulmonologist didn't have an answer for why I had the fluid for so long. He told me everyone is different and will react to treatments differently.

Lisa, Volunteer Mentor | @lls8000 | Mar 5 3:31pm

In reply to @mally007 "Sorry you had to experience that as well. I was diagnosed at the end of January..." + (show)

@mally007, so nice to meet a fellow ALKie! I have a similar timeline, diagnosed March of 2020, stage IV. I went straight to alectinib, and it's still working for me today.
I'm glad your fluid issue resolved.

tedvoelker | @tedvoelker | Mar 8 8:35pm

In reply to @lls8000 "Hi @tedvoelker, With 13 thoracentesis procedures in a year you have every right to be frustrated...." + (show)

I see my oncologist monthly while I’m experiencing the issue with this fluid. While I have fluid it’s difficult to assess the tumours I have. So far from what I can tell the Osimertinib has been good.

sharilynn | @sharilynn | Mar 10 4:51pm

In reply to @lls8000 "Hi @sharilynn , I'm sure this makes the cancer even more difficult to deal with. Not..." + (show)

Lisa, they did put in a permanent drain and we were all prepared to come home and deal with it every few days as needed. To keep him comfortable. Sadly, shortly afterward, he developed other complications and went quickly downhill. We lost my beloved late Friday and he never came home. We hadn’t even gotten to the point of an end of life discussion he had been so optimistic. We were very unprepared. My advice to anyone at this stage though, would be, don’t put off those conversations with your family. Prayers, Shari

mally007 | @mally007 | Mar 11 8:13am

In reply to @lls8000 "@mally007, so nice to meet a fellow ALKie! I have a similar timeline, diagnosed March of..." + (show)

Yes, it is nice to meet a fellow ALKie! I also started with alectinib and am still taking it. I am so grateful for those who do the research and work to make these targeted drugs that help to keep us going. Best of wishes to you.

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