I was diagnosed with adenocarcinoma NSCLC in March 2015. Lung biopsy showed EGFR 19 mutation. In May 2015, I began 150 mg Tarceva. In July 2016, I began to progress. In November 2016, lung biopsy showed T790M and I entered a clinical trial program combining Tagrisso (80 mg) with necitumimab. In April, 2017, I stopped taking the neci due to side effects. I continued on Tagrisso. In October 2017, I began to progress on Tagrisso. A subsequent biopsy showed that, in addition to EGFR, I now have ALK rearrangement. Yes, I have concomitant EGFR and ALK.
I continued taking Tagrisso and added Crizotinib, 200 mg 2x per day. A CT in December 2017 showed a small reduction in tumor size, but in April 2018, I began to progress. Since all the progression thus far was in the primary tumor in my upper left lobe, I had 5 rounds of SBRT targeting the primary tumor. A recent CT scan showed that although the primary tumor was reduced in size, other small tumors (less than a centimeter) were now appearing in my lower left lobe. My PDL is zero. My oncologist has recommended a combination of carboplatin, pemetrexed and pembrolizimab.
I would like to obtain a second opinion. I'm not sure whether to seek a second opinion from an oncologist who specializes in EGFR or ALK. Any thoughts would be appreciated.
Thank you.
Reply # - June 25, 2018, 07:24 AM
Hi fs450,
Hi fs450,
Welcome to GRACE. So far you have had success with targeted therapy and my view is that it is too soon to give up on ALK inhibitors because you are not at the end of the line with them.
There are a lot of new developments in ALK treatment. Four drugs are mentioned in
http://www.pmlive.com/pharma_news/pfizer_files_third-gen_alk_inhibitor_…
If I were in your position I would aim for a second opinion with an ALK specialist. The alternative proposed by your oncologist is a valid option and what I would go next, but in my view it is too soon to give up on ALK inhibitors.
Is there any possibility you can get a Foundation 1 or Guardant360 test done too? This would be something I would ask the specialist about.
I found this quote in the article particularly interesting:
Reply # - June 25, 2018, 11:09 AM
Hi fs450,
Hi fs450,
Welcome to Grace. I'm so sorry about your diagnosis. First of all as I'm sure you've recognized having 2 targetable mutations is a rarity so there's no data on how best to treat leaving oncologists to use their best judgement. I agree with onthemark that a look into this by an ALK researcher is an excellent idea. There are recent very good results coming from trials using new ALK inhibitors you've not tried such as the recently approved alectinib (Alecensa). Chemo is also a good choice but data suggests using the most effective treatment first gives the best overall survival rates.
This link discusses recent alk research results. https://www.onclive.com/web-exclusives/alk-inhibitors-continue-to-resha…
Please keep us posted and best of luck.
Janine