I'm a 43 year old female non-smoker diagnosed 9 months ago with stage 4 adenocarcinoma, positive for EGFR mutation, exon 19 deletion. I had one small primary tumor in my ULL that was removed through VATS and two mets to the hipbone that were treated with radiation.
After this, I was told I was considered NED and started on Tarceva as prevention in effort to ward off recurrence for as long as possible. I'm considering going off the medication and hoping to hear from others, especially doctors. I've been on it for 4 months and have reduced 2 months ago from 150 mg to 100 mg.
I don't want to be hasty, of course I'd love to do what I need to in order to stay NED for as long as possible. But it's my understanding that there is no evidence that this is necessarily an effective approach. And in the meantime, I am suffering a great deal from side effects, particularly, GI problems such as severe acid reflux and diarrhea. I also have a rash that I can cover with makeup, but am now losing my hair rapidly. As a young(ish) female professional, who works with the public, this is problematic. Then there is the overwhelming fatigue. All of this has led to considerable anxiety and depression.
I'm wondering if it is worth enduring all this for something there is no evidence of efficacy.
Is it best that I continue or is it reasonable for me to actually consider discontinuing the medication?
Tarceva as prevention when NED for stage IV NSCLC - 1288547
kelybe
![]()
Posts:15
Forums
Reply # - September 8, 2016, 11:31 AM
Hi kelybe,
Hi kelybe,
Welcome to Grace, I'm so sorry you need to be here but I hope we can help. We have quite a bit written on the subject of balancing how much treatment is right. More treatment can do more harm than good. Only the person on treatment and her care team can say when a break is right. From what you've written it sounds like you'd like and need a break. If you're NED you are either cured (Even though your diagnosis is stage IV you had curitive treatment with resection and radiation to the mets) or the cancer will return at some point and NED isn't the most important goal. You'll not know where you stand unless you break from treatment to see what happens.
Of course being cured is the number one hope of hopes and with the studies on onligometastatic nsclc showing it does happen, we know it's possible. More info here, http://cancergrace.org/lung/tag/oligometastatic/
Edit to say there are results from the radiant trial, http://cancergrace.org/lung/tag/radiant/
Dr. West wrote this blog post on the subject of taking a break as part of a long term treatment plan, http://cancergrace.org/lung/2009/04/25/is-there-value-in-a-treatment-br…
Treatment breaks is a recurring theme on the forums. They allow people to heal and feel better and they allow for further treatment later. This is a link to a site search for "taking a break". I think reading through some of these will help you understand its benefits, http://cancergrace.org/search-results?q=take%20a%20break
Your treatment has been unconventional but I think you can get an idea about your options by reading through what's been posted in the links above. At least give a good position from which to ask more questions.
I hope this will be of help.
Janine
forum moderator