Xalkori / Crizotinib Failed & Malignant Pleural Effusion Question - 1250116

tlc2tlc
Posts:7

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.

QUESTIONS:
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?

Thank you!

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Reply # - November 12, 2012, 01:54 AM

certain spring
Posts: 762

tlc2tlc, just wanted to respond as it looks as though we are in the same time zone (or you're up early!), and it is sometimes nice to know that someone is out there. I am sorry to hear about your sister-in-law, especially with her current breathing difficulties. It is horrible as I know from experience, and it must have been a massive disappointment after your hopes were high for the crizotinib.
You'll hear from the site moderator and one of the doctors later in the day. I just wanted to mention that the ALK test does occasionally yield false positives - it's been referred to a few times here. The GRACE doctors cannot give advice (so a "should we do this?" question tends to be ruled out of court), but as a fellow-patient who's had mutation testing, I would certainly be asking if the biopsy could be checked. That does happen - these tests are not infallible, nor are the labs who perform them. However I doubt the ALK, if it's present, would have "changed" in the short time since your sister-in-law was diagnosed.
If your sister-in-law definitely has the ALK, but just doesn't respond to crizotinib, Alimta is a good alternative choice - there is some evidence that people with the ALK respond especially well to it, as described in this post by Dr West:
http://cancergrace.org/lung/2011/02/26/alimta-for-alk-rearrangment/
Even if the test turns out to be negative, we have a lot of people on GRACE who've done very well on Alimta (also called pemexetred).
The pleural effusion question is definitely one for a doctor, although this post by Dr West might be useful. In it, he mentions that between 7 and 10 per cent of lung patients experience malignant pleural effusion, and that this can be frequent:
http://cancergrace.org/lung/2007/03/18/mpe-managment-options/
I am sorry your sister-in-law is suffering and hope she responds well to the new chemotherapy combination. Best wishes.

Reply # - November 12, 2012, 03:59 AM

tlc2tlc
Posts: 7

Thanks, Certain Spring for your quick reply and the links! I'm actually a night-shift RN, with just one patient tonight, and time on my hands, which is why I'm posting in the middle of the night, lol!

I have read a lot of the info on ALK and Alimta and crizotinib on here, it's great. The fluid issue has just been such a big question for us, because we don't see that mentioned very often, it's hard to research what others have been through with that, because nobody seems to be having the daily amount she's having, most seem to get the pleurodesis done at some point, or don't have a permanent catheter drain in place. Research I've done pretty much says this amount of fluid is considered end-stage, and the info I have found so far in having a Pleurx catheter placed is for patients having just a few months prognosis, so do people live with these indwelling catheters for years? Just wondering if this large amount of daily fluid affects her prognosis vs. patients without all this fluid?

I understand the "should we" question can't be specifically addressed, just wondering if that is an avenue that should be pursued with her doctor, as I've read a few blogs or other info where people were negative, then positive, then it changed from ALK to EGFR, etc.

We absolutely adore her doctor, he seems to be putting her on what she needs to be on, so we aren't questioning that, just wanting info from those who have "been there" or can point my research in a good direction.

Reply # - November 12, 2012, 10:51 AM

catdander
Posts:

Hi tlc2tlc, I'm very sorry your sister in law is having this collection of difficulties. I'm sorry too that I am late in responding to your thread. Certain Spring has given you a wealth of information as only she can present.

I'll contact a doctor to comment on your concerns and you should hear back by tonight's late shift.

Thanks for your service as a nurse, I love you guys,
Janine

Reply # - November 12, 2012, 03:57 PM

Dr West
Posts: 4735

Chemo can absolutely be helpful after crizotinib, and as certain spring and you have already alluded, there is some (modest) evidence that Alimta (pemetrexed) might be a particularly effective choice in ALK-positive patients.

I actually see very little value in doing another mutation test. Since she has already received crizotinib, the remaining options would be chemo and an EGFR tyrosine kinase inhibitor like Tarceva (erlotinib), and these are available regardless of further molecular testing. There is no additional marker that we can identify as clearly leading to an "actionable", new result. While some people, both clinical researchers and patients or caregivers, would say that we should do more biopsies on everyone all the time, because you never know what you might find, in the real world where these procedures and tests cost money and don't have any clear indication, it's not something that I think we can just categorically suggest should be done reflexively without a good reason to expect an actionable result that will change management.

-Dr. West

Reply # - November 12, 2012, 07:17 PM

tlc2tlc
Posts: 7

Thank you so much, Dr. West, understood, your information was very helpful!

Any opinion on her amount of daily fluid? She's draining 350-500 every day off that left lung. Is that negatively affecting anything besides her breathing? Her doctor mentioned during her initial diagnosis when we were asking why fluid meant Stage IV, and he explained that cancer cells within fluid just couldn't be radiated or targeted very well, so is it possibly adding to the spreading of her disease? How long can a Pleurx catheter remain inserted without problems? Does this amount of fluid adversely affect her prognosis compared to someone without the fluid accumulating that quickly every day?

We also learned something new tonight about the Pleurx bottles and the pressure inside. We took some bottles from down South up to Colorado in the high altitude, and back home again. The bottles that were exposed to the altitude are draining her very slowly, the bottles that stayed home have it gushing out very quickly!

Reply # - November 12, 2012, 08:33 PM

Dr West
Posts: 4735

No, the presence of pleural fluid doesn't facilitate faster spread of the cancer; it just signifies that the cancer can spread through the bloodstream to various parts of the body. There's a little evidence that patients with a significant pleural effusion tend to do a little worse, but it's not a huge effect.

-Dr. West

Reply # - November 13, 2012, 01:34 AM

certain spring
Posts: 762

I happened to see on another thread a mention by Dr Aggarwal of a new drug called LDK-378 that is in trial for people who've progressed on crizotinib. A clinical trial might be another way to go, depending on where your sister-in-law lives and whether that is something she might want to pursue.
You may want to keep an eye on the ALK patient thread, as there are some knowledgeable people there who make it their business to know what is happening out there:
http://cancergrace.org/topic/alk-or-ros1-nsclc-patient-group
I agree with Janine - thank you for doing a very important job.

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