I was diagnosed with stage 4 adeno lung cancer in 2009. I had 15 hits of radiation to the tumor in my right lung, then started on Carbo, Taxol and Avastin followed by six cycles of Gemzar for two nodules in my liver. I also had a spot on the apex region of my left lung.
In 2010 I was given 150 mg Tarceva and it has worked up until November of last year. I was never tested for mutations in 2009, so my first request when they found a 1.2 cm tumor in my left lung was to do genomic sequencing. I had the biopsy done at Kaiser Hospital and then had my tissue sent to Foundation Medicine. I also had a blood draw and had a liquid biopsy done with Gardant Health.
Foundation One report showed none of the standard mutations and only six alterations NTRK1, PIK3CA, ATM, MCL1, TAF1 and TP53. Gardant 360 showed only a EGFR amplification.
I have done some research on NTRK1 and PIK3CA alterations. When I spoke with MD Anderson they said the LOX-101 trial for NTRK1 was getting good results with fusion, but without fusion like me they only had one person in the trail.
They mentioned that even if I enrolled in a clinical trial they would probably try me on immunotherapy first. I started on Opdivo at Kaiser and am receiving my second infusion today. I feel I will do well on Opdivo since I was a past smoker. Testing was done on my tissue for PD-L1 expression, but the results are still out. I know good results are coming in with and without expression.
I have sought out second opinions and I am hearing if Opdivo doesn’t work my best option would be to focus on the PIK3CA alteration in some type of combo clinical trial.
My questions are should I be looking at the PIK3CA alteration as my plan B? If so what would be by best course of treatment?
Thank you for your help and support,
Don
Reply # - March 2, 2016, 02:53 PM
Hi Don,
Hi Don,
Welcome to Grace. I hope we can be of help. I'll make sure you hear from one of our faculty by tomorrow. I think you're on the right track.
On a personal note, I was a little stunned reading your first couple of lines, my husband Don was dx stage IV nsclc in 09, went to tarceva after chemo radiation and he is still here. He's been NED and off treatment since 8/12 and we don't know how or why except as we all know cancer can and does do anything and sometimes non diagnosable mets aren't mets at all. I don't dwell on the what happened but remain the luckiest girl on the block.
Just want to say WOW about doing sooo well on tarceva with a mutation much less without! I hope you do so well on opdivo that your question will have 4 different answers by the time you need one.
All the best,
Janine
Reply # - March 3, 2016, 12:40 PM
Hi Janine,
Hi Janine,
Thank you for sharing your story. Wishing you and Don the best.
Don
Reply # - March 10, 2016, 09:25 AM
Don,
Don,
I'm so sorry I didn't see the unanswered question until now. Don't worry about bumping up the post if you don't hear back in a day or so. Let me try again. Our faculty are a busy lot.
Janine
Reply # - March 11, 2016, 01:01 PM
There is certainly no
There is certainly no established treatment for a lung cancer with a PIK3CA alteration, but trials are trying to look into this. Perhaps most promising would be the ASCO TAPUR trial (www.tapur.org) trial that is just launching and will be widely available at many centers across the US and perhaps beyond it, enabling patients with various different uncommon mutations to try novel targeted therapy options all as part of one large trial effort. The trial may not be available at your center but is going to be opening in many places in the next few months.
I believe the NCI-MATCH trial would potentially serve a similar function, though I believe it requires that patients submit tissue specifically as part of the trial, rather than use outside results. That trial is also on hold right now, and I'm not sure of the time line for it re-opening.
Finally, though it isn't a molecularly targeted therapy, Taxotere (docetaxel)-based chemo, with or without Cyramza (ramicirumab), has been FDA approved and has an established survival benefit in patients with advanced NSCLC who have received prior chemo.
Good luck.
-Dr. West
Reply # - March 20, 2016, 10:52 AM
Hi Dr. West,
Hi Dr. West,
I am doing well on Opdivo, just had my third infusion, but always like to have a Plan B in place.
Thank you,
Don