I'm so glad to have found this site, I would love to get some info on behalf of my sister in law.
She's 55, never smoker, diagnosed 8/8/12 w/ Stage IV NSCLC, adenocarcinoma, ALK+. Primary tumor in L lung, spots on R lung, mets to bones. In ER 3L pleural fluid was drained off L lung, w/ daily buildup after that of @1000ml, so Pleurx catheter was implanted & is drained daily at home. Scans showed no other organs or brain affected. While waiting on ALK determination, 2 weeks of radiation.
Started crizotinib 8/27/12. First couple weeks were great, off O2, felt good, eating well. Lung fluid gradually decreased to <50ml by 9/14. On 9/17, drain put out 1200ml! Dr. did CT scan to make sure catheter was in place, it was, said it most likely was clogged, & we were getting "false low" drainage; it's been 350-500ml daily since. This scan was done after 3 weeks on crizotinib, so they used this for first comparison. Dr. was thrilled w/ response to crizotinib, didn't see measurable tumor shrinkage, but said she had "marked improvement." 2nd scan last week shows no change in lungs & spreading to liver w/ several tumors, biggest 3cm. He took her off crizotinib & starting Alimta/Carboplatin this week. This was very surprising, after such a good 1st scan, we expected good news! She's been back on O2 for @5 weeks, endurance is decreasing, coughing fits increasing w/ overexertion.
1) Can we hope for good response to the new chemo after crizotinib failed?
2) Should we request new biopsy to see if ALK has changed?
3) I don't see many postings on various sites from people having this much fluid drained daily, is this rare? Is it possibly causing the spread?