Since being diagnosed as ALK + April 2014, I have had chemo, taken crizotinib and Alectinib. Lung nodule lateral left upper lobe was radiated 2 years ago, no change in size. Still on Alectinib, but recent brain mets and enlarged lymph node in chest prompted a rebiopsy for resistance mutation possibility. Got results back from Guardant 360 blood test. The only mutation that showed up was FGFR2/c398R. That was it, no longer shows ALK +. The report also said there is no current targeted therapy for this mutation, nor clinical trials. My doctor has ordered a PET scan. In the report, the interpretation said " this alteration ...has been associated with either increased or reduced clinical response to specific treatments". Have you had any patients whereby their FGFR2 alteration was an increased response to treatments? Am hoping for the best, not showing ALK+ anymore is worrisome,
Thank you.
Formerly was ALK+, now genetic testing shows FGFR2, and no ALK - 1293445
lessie
![]()
Posts:22
Forums
Reply # - November 3, 2017, 07:16 AM
Hi lessie,
Hi lessie,
The FGFR2 mutation is being studied, although perhaps not as thoroughly as others, and I only found one trial testing an appropriate inhibitor, but for squamous lung cancer patients. Dr. Weiss wrote a post on FGF several years ago, but the current level of interest doesn't reflect the high expectations expressed at that time. There is one open trial of a FGF inhibitor, but it is for patients with squamous cell lung cancer.
Has your doctor raised the possibility of obtaining a tissue biopsy? Blood biopsies have improved in accuracy in the past several years, but any biopsy can miss cancer cells and the specific cells that carry a mutation, so that might be something worth discussing.
As you've probably read, resistance to an ALK inhibitor often appears first in the brain, and if the ALK inhibitor continues to control the cancer elsewhere in the body, it's typical to treat the brain mets and continue the ALK inhibitor. That makes the enlarged lymph node an important factor in deciding whether to change therapy. Oncologists often hesitate to alter therapy when progression is slow, preferring to continue a treatment that is controlling the cancer for the most part.
JimC
Forum moderator
Reply # - November 3, 2017, 08:07 AM
Thank you , Jim. Yes, my Onc.
Thank you , Jim. Yes, my Onc. talked about biopsy of the node as an option depending on PET results. Never thought I would cease being ALK+, I am his only patient to which this has occurred, perplexing next steps if biopsy shows same FGFR2 as genetic blood testing. Yes, I had read Dr. West's post, and I believe Dr. Weiss had something years back as well. I was hoping for treatments being available by now, but As you mentioned, nothing now. Appreciated your reply, have a good weekend