Saturn_Bound Posted November 21, 2020 Share Posted November 21, 2020 Hi everyone. My mom started Keytruda a couple weeks ago, before that, she progressed from 3b to stage 4 after four rounds of chemo. Initially she was at stable disease (during chemo) but after the last PET from 2 weeks ago they found solitary met in liver. We saw the lung specialist same week pet scan results came back and he said there was not enough fluid to drain. 2 weeks later and my moms SOB was so severe she could hardly walk, even sitting and resting was painful and caused her problems. I emailed the one on Monday, no response. We followed up on Thursday morning via mychart and asked if just in case we could drain her lungs, he said okay and we took her in yesterday morning. Turns out, A LITER AND A HALF of fluid was drained from her lungs!!!!!!! how could they have missed this? I swear she is a different person now. She can sleep, she can eat, she can laugh, she can smile. My sister and I are angry as it seems almost neglectful of the Onc team to not suggest we drain sooner!!!!!! now we are paranoid the malignant pleural effusion could exacerbate the cancer further and spread the cancer more easily. I also read devastating stats that malignant pleural effusion has even more poor prognosis than just lung cancer alone. The lung specialist said eventually she might need a catheter to keep the fluid drained. Can she get better from this? Is MPE as scary as it sounds? Link to comment Share on other sites More sharing options...
GaryG Posted November 21, 2020 Share Posted November 21, 2020 Wow what a story. It could be that it took that long for the fluid to build up. That's probably why he suggested a catheter to drain it. I will do what he said because a solution is better than guessing what might happen down the road. Link to comment Share on other sites More sharing options...
Sabacat Posted November 22, 2020 Share Posted November 22, 2020 Yes, that's likely the case. IF it returns quickly, they will want to use the catheter to spare her having to have multiple thoracentesis procedures. Have they tested the fluid to determine that it is malignant? Pleural effusion is not always malignant. Susan Link to comment Share on other sites More sharing options...
Saturn_Bound Posted November 22, 2020 Author Share Posted November 22, 2020 Hi everyone, thank you for the replies. I’m not so concerned with the eventual need of the catheter as I am concerned about the prognosis I am reading when it comes to malignant pleural effusion. They are sending the liquid to test it but the lung specialist said it does look malignant. Link to comment Share on other sites More sharing options...
Saturn_Bound Posted November 22, 2020 Author Share Posted November 22, 2020 Has anyone heard of someone or know of someone that has survived malignant pleural effusion beyond the 3-12 month general prognosis? Link to comment Share on other sites More sharing options...
Lisa Haines Posted November 22, 2020 Share Posted November 22, 2020 I personally have not had any pleural effusions, but have heard of many LC patients who do and many do have a catheter placed so that they can have the fluids removed in an at home setting (with assistance). I also believe, that like all forms of metastatic Lung Cancer, that patients can survive for long term, as long as they are being treated and I hope very much as long as they an continue to address the fluid, that will be the case for your Mom. Best wishes to you both... Link to comment Share on other sites More sharing options...
Saturn_Bound Posted November 23, 2020 Author Share Posted November 23, 2020 5 hours ago, Lisa Haines said: I personally have not had any pleural effusions, but have heard of many LC patients who do and many do have a catheter placed so that they can have the fluids removed in an at home setting (with assistance). I also believe, that like all forms of metastatic Lung Cancer, that patients can survive for long term, as long as they are being treated and I hope very much as long as they an continue to address the fluid, that will be the case for your Mom. Best wishes to you both... Thank you Lisa for the kind words. I am not worried about the catheter down the line, we are willing to do whatever it takes to see her more comfortable. I am praying the treatment can keep her stable for a long long time and I hope she is one of those people that can have it as a chronic disease or even NED ❤️ Link to comment Share on other sites More sharing options...
Tom Galli Posted November 23, 2020 Share Posted November 23, 2020 I've survived two effusions. Both occurred after my pneumonectomy. I told my chemo nurse about difficulty breathing and that led to an immediate x-ray and the effusions were drained off at my cancer clinic. So, in my experience, they can happen quickly but relief was near immediate after drainage. They are caused by irritation in the space between the outer lung tissue and interior chest wall. This space is called the pleura, thus the name. I was already at stage IV with progression after surgery and receiving chemo. My oncologist felt (hoped) the chemo would kill cells in the effusion, and it did for I had no other met save for the 3 tumors in my remaining lung which were the target of my chemo. My thoracic surgeon also suggested I might need a drain to keep the effusion from interfering with breathing. His concern was primarily because I had only one lung to breath with. I wasn't told the effusion affected my prognosis which was pretty slim anyway. But, most importantly, despite all of my recurrences, come February I'll have lived 17 years after diagnosis. If I can live, so can your mother. Stay the course. Tom Link to comment Share on other sites More sharing options...
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