1. < Lung Cancer
Profile picture for hatterasj10202

Therapy for Lung Cancer with MET exon 14 Skipping mutation (METex14)?

Posted by hatterasj10202 @hatterasj10202, Oct 21, 2025

Have been diagnosed with NSCLC 2021.
Was treated with RT (SBRT) with resolution until 2023, when multiple ground glass lesions were found on followup CT/PET surveillance. Robotic bronchoscopic biopsies of 4 lesions were pathologically the same as original lesion (Adenocarcinoma NSCLC)
Treated with Tepmetko twice with partial lesion resolution. No extrapulmonary metastasis.
Treatment stopped twice after several months due to intolerable side effect. Massive edema, lymphedema etc.
Had partial therapy with Keytruda, but stopped due to immunological interstitial pneumonia, which responded to steroids.
No therapy since 8/1/2025…next CT/PET 11/05/2025
Need wisdom and guidance regarding any new therapy or advice how to proceed. Thank you so much

Interested in more discussions like this? Go to the Lung Cancer Support Group.

Profile picture for hatterasj10202
hatterasj10202 | @hatterasj10202 | 13 hours ago
In reply to @popsue "@hatterasj10202 I was first diagnosed with NSCLC in Feb 2025. Testing showed it was driven by..." + (show)
Profile picture for popsue @popsue

@hatterasj10202
I was first diagnosed with NSCLC in Feb 2025. Testing showed it was driven by the met exon 14 skipping gene. Went through chemo and radiation, then immunotherapy with durvalumab. Last PET/CT showed it had metastasized to my lumbar region. I will be starting Tepmetko in a couple weeks. Glad to find someone with this exon 14 skipping gene. Please keep me in your conversation.

Jump to this post

@popsue I shall keep you in my conversation and update my status and any new therapeutic modalities, which good results.
I suppose you read all my entries which talk about the therapeutic and not so therapeutic issues with Tepmetko.
I do so pray you do well on the medicine.
My best and I’m here to share and advise, as best as I am able.
Hatterasj10202

REPLY
1 reply
Profile picture for popsue
popsue | @popsue | 10 hours ago
In reply to @hatterasj10202 "@popsue I shall keep you in my conversation and update my status and any new therapeutic..." + (show)
Profile picture for hatterasj10202 @hatterasj10202

@popsue I shall keep you in my conversation and update my status and any new therapeutic modalities, which good results.
I suppose you read all my entries which talk about the therapeutic and not so therapeutic issues with Tepmetko.
I do so pray you do well on the medicine.
My best and I’m here to share and advise, as best as I am able.
Hatterasj10202

Jump to this post

@hatterasj10202
Did you have any heart issues before you started the tepmetko.

REPLY
1 reply
Profile picture for hatterasj10202
hatterasj10202 | @hatterasj10202 | 7 hours ago
In reply to @popsue "@hatterasj10202 Did you have any heart issues before you started the tepmetko." + (show)
Profile picture for popsue @popsue

@hatterasj10202
Did you have any heart issues before you started the tepmetko.

Jump to this post

@popsue
Indeed I did. Implanted pacer:defibrillator from cardiac arrest in 2014. Mitral valve insufficiency and heart attack in 1989.
I am blessed to be alive, but only to face this cancer.
Trying to stay positive.
I shall miss ( in heaven ) my partner, my 5 children, their mates and 9 grandkids, as well as a host of long term friends and a slew of students, who came and went over 52 years as Clinical Professor of Medicine, at the University of Arizona.
Today is a tough day for me in the lite I have shared.
Blessings my dear 🫁😇

REPLY
Profile picture for mamajite
mamajite | @mamajite | 6 hours ago
In reply to @hatterasj10202 "Having just celebrated my 83rd bday and one year with no therapy, my scans still show..." + (show)
Profile picture for hatterasj10202 @hatterasj10202

Having just celebrated my 83rd bday and one year with no therapy, my scans still show stability, but the density in the left lower lobe has increased, but the overall size remains stable with no increase.
The lingula lesion is same and the left upper lobe has no activity. MRI Brain scan was normal.
At this point, I’m facing decisions regarding plan of action. Been OFF all therapy since 7/27/25, one full year.
I’m thinking about taking off label dosing of Tepmetko for two months and see where things go. The return of the massive edema will cause me to stop therapy, but stability of my lesions or regression will encourage continuance.
I am blessed still NOT to have any extra pulmonary metastasis nor any symptoms.
My next scan is 10/01 and I am restarting Tepmetko this week.
My best to all with this difficult disease.
Shall post more as time moves forward.
Jhatteras

Jump to this post

@hatterasj10202 best of luck with the off label dose of tepmetko - I hope that it keeps things stable with manageable side effects. the edema sounds very difficult. sending lots of good wishes your way. 🙏🏻

REPLY
Please sign in or register to post a reply.