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

Posted by hatterasj10202 @hatterasj10202, Oct 21 5:51pm

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

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Lisa, Volunteer Mentor | @lls8000 | Oct 22 2:03pm

@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?

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hatterasj10202 | @hatterasj10202 | Oct 22 4:34pm
In reply to @lls8000 "@hatterasj10202, Your story continues to get more complicated. These therapies are hard on our bodies. I'm..." + (show)
Profile picture for Lisa, Volunteer Mentor @lls8000

@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?

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@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.

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Lisa, Volunteer Mentor | @lls8000 | Oct 23 4:29pm
In reply to @hatterasj10202 "@lls8000 Thanks for your note and yes, I am going to Mayo Clinic in Phoenix in..." + (show)
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@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.

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

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hatterasj10202 | @hatterasj10202 | Oct 24 10:46am
In reply to @lls8000 "@hatterasj10202 , That's great! Somedays all we can do is to keep moving forward. Hugs." + (show)
Profile picture for Lisa, Volunteer Mentor @lls8000

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

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

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hatterasj10202 | @hatterasj10202 | Nov 6 11:23am
In reply to @lls8000 "@hatterasj10202 , That's great! Somedays all we can do is to keep moving forward. Hugs." + (show)
Profile picture for Lisa, Volunteer Mentor @lls8000

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

Jump to this post

@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

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