Is it gone? - 1263979

JocelynM
Posts:3

I am the luckiest of patients - one for whom Tarceva has work almost miraculously. I was diagnosed in 2008 w/3b adenocarcinoma - a single 2cm primary and lymph involvement. After chemo and radiation I was able to have surgery. Dr. was hopeful of a cure. Alas, a recurrence was found in 2010 - lymph near my thyroid. more radiation and then Tarceva 150mg until now. I have no evidence of disease. After almost 4 years on Tarceva my PETS have no warm spots. I keep wondering - how long does one take this drug with all it's side effects before "checking" to see what happens without it?

Forums

catdander
Posts:

Hi Jocelyn and a big CONGRATULATIONS on doing so well. My husband had the luck to ask the same question and is still NED almost 2 years out from treatment. His is a different set of circumstances, squamous pancoast unsuccessful biopsied mets in 2 places and 3 years of chemo plus... plus...
But the question is exactly the same. I'll ask one of our specialists in the field for a comment.

Best of luck!
Janine

I don't know that this applies to you but think you might to interested in the topic, http://cancergrace.org/acquired-resistance-patient-forum-september-6-20…

Dr West
Posts: 4735

It's an enviable problem to have -- "is the medicine I'm taking just alligator repellant (the term I use to describe an intervention we do that can be credited for doing what is truly an unnecessary task)?".

It's also uncharted territory. No data exist to speak to this question. But after years, my thought process moves toward the conclusion that after so long, it's actually very likely that if a recurrence were to happen, it would have occurred by now (probably 98-99% of people with EGFR mutation-positive NSCLC develop acquired resistance by 4 years out), and if there are viable cancer cells that aren't eradicated after this long, they aren't going to be with just a little more time. Since these medications have very real side effects, significant cost, and unknown but potentially real long-term adverse effects, I think it's very appropriate to back off and ultimately see whether it's been doing anything or not.

I would distinguish also between situations in which you've seen metastatic disease shrink on the treatment and situations in which the disease may have been entirely eradicated before you started the treatment. I'm not inclined to test things if you saw the cause/effect relationship of giving the targeted therapy and watching cancer shrink. On the other hand, I'm far more skeptical that the targeted therapy is really the cause of the disease-free status if it was added in after a treatment that could have itself already been curative.

Good luck.

-Dr. West