A Patient’s Experience of The Thoracentesis Procedure (Pleural Effusion tap, Thoracentesis, removal of excess fluid from the chest)
During the Thanksgiving holiday, over a liter of pleural fluid was withdrawn via needle from my right chest space. I had just finished my third cycle of Carboplatin, Pemetrexed, and Lorlatinib after almost ten years of TKIs alone. The fluid first became evident on a PET scan and was classified as moderate effusion. I didn't even know it was there but felt substantial relief when they took it out. Breathing is much easier and the pressure is gone. Since Gina Hollenbeck passed (editor’s note: Gina was a patient, advocate and a former Board President of ALK Positive Inc. who sadly passed away in 2022), I don't recall any Medical Committee discussions about this topic, so I thought I'd share the experience and path I followed.
The fluid in my chest was apparently non-symptomatic, so my oncologist said we didn't have to do anything about it. A few emails to Dr. Camidge, Dr. Qin, and Dr. Merajver reversed that opinion. My doctor then prescribed the effusion removal, or thoracentesis, electronically to the Interventional Radiology department at John Muir Hospital in Walnut Creek, CA., and it was scheduled for the very next day. I learned that they don't mess around with thoracic fluid conditions, as there are lots of people that have to be drained frequently, and it occasionally won't wait. I did inform the scheduler that I was bringing my own sample box to send to University of Michigan, and she had no problem with that.
The process required most of a day at the hospital for prep and aftermath, as they expected me to be under twilight anesthesia, but wound up doing it under local anesthesia. They did all the usual pre op procedures, as though for a biopsy, but in the end, I casually leaned over a table on my elbows and never saw the doc, who did it under ultrasound guidance from behind me in about 20 minutes. A liter of yellow fluid looks huge when it comes out of you unexpectedly. It presumably weighed about 2lbs, as that's what I lost. The pathology cytology reports happily came back negative for malignancy over the weekend. The consensus of my oncology chorus is that it takes three negatives to be confident of being positive of non-malignancy, so this one is presumed non-definitive. But I'll take it as good news today, and presume the chemo is working on it, as it appears to be working on my abdominal mets, on my tumor markers, and on my ctDNA per Guardant blood biopsy results. They did not send fluid out for further testing as far as I know, although my doctor may still order something.
We managed to send three big vials of fluid to the researchers at University of Michigan ALK NSCLC Research Initiative for analysis in a battery-powered cooler box they sent to my house to hand walk through the process. Everyone in the whole chain of logistics was very cooperative, although surprisingly, none of the local hospital staff had seen anyone ship fluid or tissue that way before. Maybe the hospital’s Pathology department handles those kinds of requests normally; maybe it just never happens at my hospital. Anyway, a sharp young technician mastered the sterile handling and packing instructions in no time at all and did everything perfectly. It was a one-foot cubed FedEx insulated box, and the internal cover was a powered cooler device, the label of which turned blue after pushing the button. We dropped it off at FedEx on the way home from the hospital and presumably it kept everything cold at the correct temperature for the successful overnight delivery directly to Dr. Sofia Merajver at 8:00 the next morning. So now it gets more interesting.
From Dr. Angel Qin, UMichigan ALK NSCLC Research Initiative co-lead:
"While I agree that a negative cytology does not have 100% negative predictive value, I still think it’s great to see that the cytology was negative. Let’s keep an eye to see if the fluid recurs. The team is using your pleural fluid as a “normal control” of sorts and Sofia and the translational team have been thinking about different testing. She can elaborate if you’d like her to."
From Dr. Sofia Merajver, also UM co-lead:
"I agree completely that it takes more than one tap to deem an effusion non-malignant. So, if another one comes in, we will surely test drugs. [Author’s note: test drugs means to grow organoids from cancer cells in the fluid and test cancer drugs against them for treatment efficacy]. However, none of us saw any cancer cells and we all looked. So, testing drugs would not have been the best use of this valuable sample. This one had cells that looked all normal of different types coinciding with the cells we do see on non-malignant effusions in general, by the judgement of several extremely experienced observers, so I decided today, after a lot of thought and analysis, to do the very best single cell sequencing of all your cells present. This is HUGE as a panoramic normal-like control for all and any subsequent such samples, from you or from any other ALK patient. This is something that no one ever gets because it is so rare to have a normal-like sample from an effusion in a patient who otherwise has ALK cancer, but super important to sort out the exact tumor clones when there is tumor. So, let me assure you that your contribution to science is spectacular already and continues to grow."
Back to Jeff:
The effusion grew from mild (<500ml) to moderate (500ml-1500ml) between September and November PET scans (>1500ml is considered severe). But the scans also showed recession of all other visible metastasis, so we'll see if the effusion doesn't cease and desist, or at least back away slowly. Hopefully the fourth chemo infusion I had today will provide for good scans. If the Carboplatin/Pemetrexed combo continues to work, then a fifth and sixth cycle may be called for.
So what was learned?
First of course is that it's not showing as cancerous. Second, the results coincide with other evidence of decreasing disease under the chemo regimen. Third, it's an unwelcome development for sure, but our medical community knows what to do with appropriate urgency. Fourth, the UMichigan fluid/biopsy box and procedural details can possibly be managed by cutting out all the middlemen and just carrying the box to the procedure. Fifth, there are important implications here for our ability to get our cancer to UM, grown into organoids, and tested against drugs.
Pleural effusion can be caused by a variety of factors in later stage NSCLC, which I won’t go into here. Like everything else on this long ALK journey, I will adhere to the admonition of my oncology social worker niece way back in 2015, when my estimated survival was less than six months. “Suck it up cupcake”, she said.
Epilog: January 7, 2025 - After four cycles of Carboplatin and Pemetrexed, scans show no evidence of disease. I’m now on maintenance daily Lorlatinib, and Pemetrexed infusions every three weeks.
Author: Jeff Sturm
ALK patient, ALK Positive Inc. Board member and Medical Committee member