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

@hatterasj10202, Your story continues to get more complicated. These therapies are hard on our bodies. I'm sorry to hear that you have not found one that has provided a longer break from the stress of having tests and the side effects of the meds.
With the unique nature of the exon 14 skip, are you being treated at one of the large research-based clinical institutions? Do you feel that your oncologist is an expert in this area? Have you had a second opinion, or do you feel the need for one?

@lls8000
Thanks for your note and yes, I am going to Mayo Clinic in Phoenix in 2 weeks for a second opinion. They have all my records scans, biopsies etc.
Trying my best to keep moving forward.

@hatterasj10202 , That's great!
Somedays all we can do is to keep moving forward. Hugs.

@lls8000
Indeed that is true. All set for new scans, MRI and consultation at Mayo.
Consult 11/7. Will post any results.🤙

@lls8000
My PET/CT done on 11/4, just 2 days ago, did not show any progression of disease, no extra pulmonary metastasis, having been off any therapy for 3 months.
Leaving today for Mayo Clinic and am hopeful they have suggestions, answers and recommendations.
Will get back to you early next week.
Blessings

Hello hatterasj10202, I appreciated this posting very much -- it's the closest I've seen to someone who's been in my situation... but just a couple of years ahead of me.
How are you doing now? Of course I'm wishing you many long years ahead -- as I do for myself -- but at some point, I'm thinking I'll be ok with just stopping all treatments.
When you discontinued the Tepmetko, how long did it take you to lose the massive edema?
What other Rxs have you taken after being off Tepmetko other than Keytruda?
Blessings to you,

@mangolinda8191
The time I had any therapy was 7/27/25 and it took 2 months for the edema to resolve. As you know, I took immunotherapy which was complicated by interstitial pneumonia requiring 2 months of steroids with complete resolution.
The followup PET/CT scans I have had from July 2025 until my most recent in April 2026, show much resolution of many lesions and reduction in activity in many as well. My disease continues to be isolated go just my left lung, with no metastasis out of the lung. No pleural disease, no systemic disease, no brain issues and no involvement of any lymph nodes. My Mayo Clinic pulmonary oncologist is quite delighted with the stability of my disease with no progression, but rather regression. He advised no therapy at this point and repeat PET/CT scan July 2026.
Hoping this answers some concerns. My personal best to you.

Question: are the dates u mention in 2025 correct or are they typos & u meant 2026?
Your Longterm experience is helpful to me. I’m newly diagnosed and on TEPMETKO. I’ve already interrupted it due to that bad edema in my legs.
With all the best wishes to you.

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

@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.