Formerly was ALK+, now genetic testing shows FGFR2, and no ALK

Portal Forums Lung/Thoracic Cancer ALK Inhibitors Formerly was ALK+, now genetic testing shows FGFR2, and no ALK

This topic contains 2 replies, has 2 voices, and was last updated by  lessie 2 weeks, 1 day ago.

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November 2, 2017 at 5:13 pm  #1293445    

lessie

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.

November 3, 2017 at 7:16 am  #1293451    
JimC Forum Moderator
JimC Forum Moderator

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


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

November 3, 2017 at 8:07 am  #1293453    

lessie

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

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