Hi,
My brief history - diagnosed NSCLC ALK+ three and a half years ago. Had chemo radiation which made me NED for three years, last June a tiny pleural effusion appeared on PET/CT with no evidence of uptake, but by October this had increased in size (still tiny) and a small pleural deposit was noted. I had been having some pain, so i suspected something was up! Started Crizotinib end of October, and by my next scan at the beginning of February my PET/CT was again completely clean - complete metabolic response. They did note however that the pleural effusion had increased in size - again still small, but larger none the less. I did mention that after i started taking the crizotinib I started getting symptoms including shortness of breath and chest tightness which seemed to resolve, and my onc (who is very well known), said maybe the fluid had increased in volume and was now on the way down. This however was four weeks ago, and I have started to feel a little tight in the chest again. I am of course worried this indicates increasing fluid build up, but with a clear PET/CT four weeks ago, and five months until my next scan, I would really like to just enjoy my time and not worry about cancer. I am at a loss however as to why pleural fluid would be increasing in the absence of cancer, even with a complete metabolic response on PET/CT. Can anyone help with this?
Thank you!
Reply # - March 5, 2016, 05:34 AM
Hi ardnaxela,
Hi ardnaxela,
Wecome to GRACE. Congratulations on your good response initially to chemo radiation and now to crizotinib. I'm sorry to hear of the symptoms your pleural effusion is causing, but as Dr. West has stated:
"By the formal criteria used in clinical trials to assess for response or progression, a change in a pleural effusion does not constitute a significant change in disease status. This is because inflammation or infection, or even heart failure, can cause an effusion, and it’s also a product not just of production of fluid but also the draining ability. There are enough variables that we prefer to see it decrease or resolve, but we don’t consider a worsening effusion as clear evidence of progression." - http://cancergrace.org/topic/chronic-cough-and-difference-of-opinion#po…
Perhaps you can get symptom relief by draining the effusion, or further intervention may be possible and desirable, such as a pleurodesis, a procedure in which a substance is inserted into the pleural space in an effort to cause the layers of the pleura to stick together, eliminating the friction which causes the fluid to build up. You may want to read Dr. West’s post on Options for Managing Recurrent Pleural Effusions.
JimC
Forum moderator
Reply # - March 6, 2016, 02:40 PM
Did they drain and test the
Did they drain and test the fluid before starting you on treatment? I wouldn't wait 6 months to see your onc if you're having problems. They may move up your scan or do something else like the draining and pleurodesis as Jim mentioned. Take care Judy