Stage 4 ALK+ NSCLC. Xalkori at its end? What next? - 1249506

chrisengel
Posts:1

First, THANK YOU for the numerous points of NSCLC information you provide through your various channels.
I am the husband of a 39 yr old non-smoking female with stage 4 ALK+ NSCLC. In mid June of this year she began taking Xalkori (Crizotinib). After 5 weeks of the drug, the primary (lung) and secondary (adrenal) tumors had shrunk by nearly 40%. After another 6 weeks, the tumors had shrunk yet another 10 to 15%. Now, after a further 8 weeks, the latest scan shows they have not changed.

I realize this is very little information to work with... but I'll ask
1. Would it be advantagious to perform a biopsy NOW versus waiting to perform one after the next scan (in two months) if it shows signs of the cancer progressing?
2. Given the steady decline in the effectivness of the Crizotinib against her cancer, is there any reason to believe that it can become effective enough _again_ to shrink the tumors? Or put a diffent way, now that the rate of tumor decrease has stopped is there any reason to beleive that it could pick up again and shrink further?

I am trying to be as proactive and agressive as possible to save my wife and mother to my three young daughters. So I'm gathering as much knowledge and opinions as I possibly can to do so. Your blogs and GRACE articles are very appreciated.

Thank you VERY much for any response.

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Reply # - October 25, 2012, 11:55 AM

double trouble
Posts: 573

Hi Chris, and welcome to GRACE. The moderators will direct your question to the faculty soon. In the meantime I just want to say welcome. I'm sorry you had a reason to find this site, but I think you will be very glad you did, since the amount of information and support found here cannot be matched elsewhere.

I can't answer any of your questions, but I want to thank you for sharing your wife's experience with Xalkori. We don't hear from many patients on this drug, and I just found out I am ALK positive, so any experiences are of interest to me.

That sounds like a wonderful response! Unless she is actually progressing, around here, we celebrate "stable" disease as a great accomplishment. If I'm reading correctly, she's been on Xakori for 4 months so far and still going strong? So I will be the first to say congratulations. Many patients remain stable for a very long time on the right drug, so even though it is awful to have cancer in the first place, especially at her age, it looks to me (again, a patient, not a professional) like she is having a great response. I hope she remains stable for a long time, and I hope that eases your worry at least a little bit for now. Hang in there. Others will be along to comment soon.

Debra

Reply # - October 25, 2012, 12:08 PM

certain spring
Posts: 762

Hallo chrisengel. I am sorry about your wife, though it is wonderful that she is getting Xalkori.
This doesn't answer your specific points, but I wanted just to agree with Debra that although some people see very dramatic shrinkage with targeted drugs, shrinkage is not everything. If the cancer stays stable and doesn't grow, that in itself is a very desirable outcome.
I also wanted to point you in the direction of the ALK/ROS patient thread, which might be useful in the future:
http://cancergrace.org/topic/alk-or-ros1-nsclc-patient-group
On the question of re-biopsying, I am not a doctor but there doesn't seem much point in re-biopsying pre-emptively. In this study reported by Dr West, patients taking Xalkori were re-biopsied after resistance had set in:
http://cancergrace.org/lung/2012/01/13/mechanisms-of-criz-resistance/
I completely understand why you are nervous and want to be proactive, but Xalkori is a great drug for those with the ALK, as I am sure the moderators and the GRACE doctors will confirm. Best to you and your wife.

Reply # - October 25, 2012, 12:28 PM

catdander
Posts:

Hi Chris, Welcome to Grace. I'm very sorry your wife and young family are going through this.
There really isn't anything to add to Debra's and certain spring's excellent comments.
It's very possible that she can remain stable for a long time and I sincerely hope she does.
As cs suggested if re biopsy it's because you'd want to know how the cancer has changed and caused progression. She's not there and hopefully won't be anytime soon.

So that leaves just a big Congratulations on stable! It's a good thing.

Janine
forum moderator

Reply # - October 25, 2012, 05:55 PM

Dr West
Posts: 4735

To try to address your questions, I'd say that the general pattern almost all the time is that the tumor shrinkage is "front-loaded", so that you see most in the first scan, then little or none after that. However, as others here have said, prolonged non-progression in the absence of further shrinkage can go on for a long time, so this is really probably too early to start concluding that she has acquired resistance to crizotinib.

Right now, it's really still an open question of whether there's a definite value in rebiopsying. Some centers do it as a matter of course, and it certainly is likely to lead to a better understanding of the disease biology, but there isn't any proven benefit right now, and it does incur added cost and some (though generally minor) risk. Many insurers won't pay for it, and it's hard (and by that I mean impossible) to show evidence to counter the charge that it's not standard of care right now. It's certainly possible to find a result that will change the direction of treatment, but the yield is pretty low, and it's more of a "let's just see what we see" proposition.

To answer your second question, it's very hard to envision the same treatment becoming more effective in the future, except in the case that she comes off of it for a while, progresses and has the cancer re-populated with more crizotinib-responsive cells, then has crizotinib reintroduced to produce a transient response. Those situations of actual significant shrinkage the second time around are still pretty uncommon.

Good luck.

-Dr. West

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