My mom started CO-1686 almost 2 weeks ago and her cough appears to be worsening. I am worried that the medication is not working for her. She is a long time responder (almost 5 years) to Tarceva and is T790M positive, but she recently developed multiple brain mets.
I know it may be too early to tell, but I do not know what we will do if this medication fails. I am so worried that I cannot sleep. The current AZD-9291 trials appear to be full at my hospital, and the phase II trials opening next month exclude patients previously treated with third-generation TKIs.
I hear so many stories of people experiencing improvement in their symptoms within the first week on Tarceva. Are there patients who do NOT experience improvement within the first two weeks but end up being long-term responders to these types of drugs (TKIs)?
Reply # - April 23, 2014, 05:47 AM
Reply To: Mom on CO-1686; Cough worsening…What to do?
Hello,
Welcome to GRACE. I think looking at two weeks as an evaluation point is probably unrealistic and arbitrary. There are patients who respond dramatically to Tarceva very quickly, but these are not the only patients with good, long-lasting responses. In addition, your mom's situation is not that of a patient first treating lung cancer with an EGFR TKI; this is a case of acquired resistance in which a quick, dramatic response would be less likely.
There are also several other considerations. Until there is a follow-up scan, the specific cause of her worsening cough is unknown. Is it possible that she has a pleural effusion which could be drained to lessen her symptoms? Or is there another cause for her cough? These are questions you may want to ask her doctor.
Also, trials of new EGFR TKIs may not be her only option. You didn't state if she had been treated with any traditional chemo agents previously, but those drugs, as well as other novel trial agents are also options.
JimC
Forum moderator
Reply # - April 23, 2014, 09:04 AM
Reply To: Mom on CO-1686; Cough worsening…What to do?
Yes, I agree with Jim's perspective here. Though it's very encouraging to see symptoms improve rapidly after starting a new treatment, that's not something we should expect, especially if the symptom is pretty non-specific (plenty of people without cancer get a transient cough, after all). And yes, some people who don't have an immediate symptomatic benefit do very well for a very long time. That said, if things seem to be clearly worsening, it may be feasible and a v ery reasonable plan to see about moving the scan up to see if things are worsening, then move on to something else.
In terms of that something else, Jim is also quite right in noting that EGFR-directed therapy isn't the only possible treatment for lung cancer. If anything, people with an EGFR mutation tend to also respond better to conventional chemo than the general population.
Good luck.
-Dr. West
Reply # - May 21, 2014, 08:10 PM
Reply To: Mom on CO-1686; Cough worsening…What to do?
Thank you both for your responses.
Unfortunately, my mother's scans this week showed progression, and she has been taken off of the trial.
We are heartbroken. My mother has both an exon 19 deletion and the T790m resistance mutation that this drug targets. For the past year, we have been swept up by all the excitement surrounding this potentially game-changing breakthrough drug. Although we knew that there was always a chance that this drug wouldn't work, we never really believed that it would ever happen to her. I know that my logic is probably flawed, but because my mother responded so well to Tarceva, I've always assumed that she would perform above-average on future TKIs.
I know it's still very early, but is there any data on T790m+ patients who do not respond to third-generation TKIs?
Reply # - May 22, 2014, 09:40 AM
Reply To: Mom on CO-1686; Cough worsening…What to do?
You're correct, it is very early for data on those who don't respond to third-generation TKIs since these trials have only begun relatively recently. In addition, it may be a question of comparing apples and oranges, because each patient brings a different treatment history to such trials.
As Dr. West pointed out above, it may be helpful to look at conventional chemo options at this point. The three drugs FDA approved for second and later line therapy are Alimta, Taxotere and Tarceva. You haven't posted if your mother has received either Alimta or Taxotere, but as Dr. West said those who respond well to EGFR inhibitors tend to respond well to chemo.
JimC
Forum moderator