My husband recently progressed on crizotinib with mets to the liver and lymph nodes. A liver nodule was biopsied and we got confirmation of disease. He was started on ceritinib and tissue sent for mutation testing. I found out late yesterday that after sending every bit of tissue obtained there was still insufficient amount for testing. He is 4 weeks into ceritinib with expected scans in 4 more weeks. My question is do we attempt another biopsy at this point or just proceed with scan as planned? We will meet with oncologist Wednesday for a plan but of course my mind is working overtime and just asking for thoughts. It almost feels as if we are flying blind... I guess the testing was kind of a security blanket for us that we were headed down the right path. Thanks for any input!
Melissa
Reply # - July 4, 2015, 05:45 AM
Hi Melissa,
Hi Melissa,
I'm sorry to hear that there was insufficient tissue for testing, and I understand that the results might have reassured you that you're on the right path with ceritinib. But with only four weeks left until the scan, and unless your husband is feeling noticeably worse, it seems that continuing with ceritinib until you get the scan result would make a great deal of sense. You wouldn't get an answer from another biopsy and mutation testing much sooner than that in any event. Moving the scan up a couple of weeks might also be an option, but you'd really like to give ceritinib enough time to get a good indication of its efficacy.
We'll be looking forward to a great scan report in a few weeks!
JimC
Forum moderator
Reply # - July 4, 2015, 03:55 PM
It was my thought too that
It was my thought too that the biopsy would take longer than waiting on the scan. I'm not sure if another biopsy could be obtained anyway. The largest liver nodule was biopsied but it was only 15 mm. He has felt fine. Actually never felt bad before, we just caught the progression on routine scan. Right now we are dealing with a large effusion around his left knee that had a partial replacement about 7 months ago. He had an injury to the knee and of course his ortho is out of town for the holidays. X-rays look good as far as the hardware goes but no one really wants to touch it (drain it) due to risk of infection. He is also on Lovenox and Coumadin (transitioning to Coumadin) for a very small PE, so there is the thought that he could have bled into his knee with the injury. Of course my first fear is always disease... His ortho doc also happens to be an oncologist (perk of being an oncology nurse and getting that doc to do his replacement) so I'm glad that he will be looking at it. Sorry for rambling! Being stuck inside on a holiday weekend sends the mind into overload... Being an oncology nurse carries so much responsibility as the wife! I'm so afraid of missing something or not making the right decisions with him.
Reply # - July 8, 2015, 04:02 PM
So, today the doc did a
So, today the doc did a liquid biopsy to test for ALK since we didn't have enough tissue for testing. Not sure how I feel about it... Can the fact that he has been on an ALK inhibitor (crizotinib and now ceritinib) for four years affect the results of the test? Would a negative ALK result change the treatment plan?
Reply # - July 9, 2015, 11:35 AM
Hi jmpchic,
Hi jmpchic,
There isn't a clinical reason for a biopsy when moving from 1st to 2nd gen ALK inhibitors. Dr. Weiss and Dr. Camidge discuss that in the following video, http://cancergrace.org/lung/2014/04/03/alk-positive-lung-cancer-forum-2…
I hope this helps.
Janine
Reply # - July 20, 2015, 08:31 AM
So, got results from blood
So, got results from blood testing for ALK and the mutation was not detected...any thoughts on the next step? Do you wait for scan in 2 weeks? Do we take that testing at it's face value and change therapy? This is all very confusing and scary. Does anyone know if long history of ALK inhibitors can affect the outcome of the biopsy results?
Reply # - July 20, 2015, 01:15 PM
Any biopsy can give a false
Any biopsy can give a false negative whether from serum testing or tissue. The fact still remains that if a person progresses on zalkori the next treatment standard is ceritinib. A biopsy doesn't change treatment decision in this case.
While we can't tell anyone what they should do we can say what treatments are given and why. Everything we've said stands and answers your most recent question. If you'd like to learn about serum testing/liquid biopsy take a look at these video posts, http://cancergrace.org/lung/tag/liquid-biopsy/
There is a term we use for the stress we feel while waiting on scans, scanxiety. We all feel it coming. I hope your husband finds his tumors reduced or stable.
Best of luck and hope,
Janine
Reply # - July 20, 2015, 01:24 PM
Thanks for your reply and
Thanks for your reply and sorry for the extreme sense of urgency. Our onc is out of town and of course the fear of the unknown just drives you to look for answers... I feel comfortable that we are doing the right therapy, I just know this news is going to feel like a setback in my husband's mind and his fear and anxiety is what saddens me to no end.
Reply # - July 20, 2015, 05:13 PM
I understand and when waiting
I understand and when waiting for results it just that much more difficult.