I have been on Tarceva for 22 months. I was diagnosed with NSCLC in October 2010. I had bilateral tumors - one in each lung. One was adenocarcinoma and the other adeno with BAC features. I do have the EFGR mutation.
Being treated at MDAnderson in Houston. Started on Tarceva Dec., 2010; had lower left lung removed April, 2011; had stereotactic radiation of right lung tumor July, 2011. Scans since this time have been NED. I just had my last one last week (May 15, 2013). My onc has recommended stopping the Tarceva because of the intestinal problems it has caused the past six months (ulcerative colitis). He said the Tarceva has probably done all it was going to do anyway. If my cancer returns we can restart the Tarceva. I was elated at first, but now I'm home and very worried about not being on Tarceva. I feel that I have lost my "safety net". Does anyone have any thoughts or maybe a similar experience. I always felt like if the cancer cells returned, Tarceva would "attack" them - now they're not there. I will be monitored every three months. Thanks for any replies.
Reply # - May 21, 2013, 08:15 PM
Reply To: getting off Tarceva
It's great that you've had no evidence of disease and are doing so well, except for the side effects of the Tarceva (erlotinib). Though the general practice is to continue the EGFR inhibitor in this setting until clear progression, that presumes that the treatment isn't prohibitively toxic. In other settings, I'm very comfortable taking a break from the systemic therapy if the treatment isn't feasible on a prolonged basis, then restarting it when we see progression. We tend to do that less with targeted therapies in patients who have the "driver mutation" like EGFR or ALK because we can sometimes see rebound progression/"flare" of disease after it's stopped, but some people can do very well off of it, even for a long time.
I certainly understand the rationale for stopping it, given the side effects and absence of visible disease to treat, and I agree it's likely that the cancer would respond again if it progresses off of Tarceva. This is just a situation where it's necessary to rely on judgment, with an alternative approach being to titrate the dose down to see if it would be feasible to reach a daily dose that isn't associated with very difficult side effects but can still do the job of suppressing the cancer successfully and over a long period of time.
Good luck.
-Dr. West
Reply # - May 22, 2013, 07:49 AM
Reply To: getting off Tarceva
Thank you for your reply. In the almost three years at MDAnderson, no one has ever told me that the EGFR was a "driver" mutation. I was initially glad I had it because they did tell me the Tarceva would probably work if I had it. Now I am to assume that is why I probably acquired lung cancer in the first place. Is it even a remote possibility that I could "survive" this cancer, and it will never show up again? Does having that mutation make me more susceptible to a recurrence of the cancer? I can't believe that this wasn't explained to me before.
Reply # - May 22, 2013, 10:28 AM
Reply To: getting off Tarceva
Hi there, and sympathies for your situation - I can imagine it must be like letting go of a much-loved security blanket. However I hope you find everything that Dr West says, from his wide experience, to be reassuring,
I hope too that he or one of the other doctors will comment on your last post. I don't think it's right to say that having the EGFR mutation either caused your cancer or makes you more liable to recurrence. On the contrary, as you've already found, it is of real benefit insofar as it provides a target for so-called "TKI inhibitors" and other drugs. The confusion may arise from the use of the term "driver mutation". My limited understanding is that cancer arises from a whole traffic jam of genetic faults and damage; what's good about a "driver mutation" is that doctors can identify a single car speeding down the highway, so to speak. My metaphors are rubbish, but everything I have read suggests that EGFR is your friend, both now and in the future. All good wishes.
Reply # - May 22, 2013, 03:42 PM
Reply To: getting off Tarceva
With only very rare exceptions, a metastatic lung cancer isn't going to be curable, though it can sometimes be so well controlled and/or so slow-growing that it may be managed over many years. There are even some advanced lung cancers that can be managed over such a chronic basis that they may not threaten survival.
It's the fact that a cancer is considered metastatic that makes it prone to recurrence, and not the EGFR mutation specifically. Beyond that, I think that any specific thoughts about your case would require details of your case that would only be available to someone directly involved in your care.
Good luck.
-Dr. West
Reply # - August 31, 2013, 01:52 PM
Reply To: getting off Tarceva
Are there any studies for patients on Tarceva with NED (no evidence of disease) for a while, say two or three years, that Tarceva can be stopped similar to the case of Arimidex for Breast cancer?
Reply # - August 31, 2013, 06:21 PM
Reply To: getting off Tarceva
There are not, at least not for advanced NSCLC. Tarceva and other EGFR inhibitors have really only been studied with an approach of treatment until progression, except as a post-operative treatment for early stage resected NSCLC, where Iressa (gefitinib) was given for a limited time, actually stopped after an average of 5 months, and the survival appeared to be worse in people who received it compared with those who received a placebo. More info here:
http://cancergrace.org/lung/2010/07/25/post-asco-disc-of-br19/
We're waiting on results from another trial, called RADIANT, that gave up to two years of Tarceva after surgery for early stage NSCLC. Another, smaller trial, called SELECT, gave post-operative Tarceva and appeared to be favorable while patients were getting it, but the patients seemed to develop recurrent disease pretty quickly once it was stopped.
The short answer, though, is "No, there is no meaningful evidence that has looked at stopping an EGFR inhibitor before progression in the setting of advanced/metastatic NSCLC." That's different from taking an EGFR inhibitor preventively when someone may already be cured. In that setting, the best answer is that there is no evidence it's appropriate to use Tarceva at all, so there's no evidence to say how long to continue it.
-Dr. West