MET EXON 14

[TD1]

Looking for others with MET EXON 14 skipping.  I have stage IV now stage IIIA nsclc, adenocarcinoma. Had a 15 cm tumor with all right side mediastinum lymph nodes involved and a few nodules in the right pleura. MET Amplification.  SUV max pre-treatment 25.9.  Poorly differentiated adenocarcinoma. Was treated with crizotinib, had excellent results with 60 % shrinkage after a few months. I had a right pneumonectomy in April 2018 and had a pathologic complete response. Crizotinib was my only treatment. I didn't have chemotherapy. I stopped taking crizotinib one month post pneumonectomy and a few cancerous nodules reappeared on my right side between two ribs.. I had SBRT True Beam radiation and apparently, it was also successful. I went back on crizotinib and so far my scans have been clear.  There is a group called MET CRUSADERS and they can be found at METcrusaders.org and on facebook for anyone who would like more information on the latest treatments and to discuss with others with MET exon 14... I have continued working and still work full time, apart from the surgery and post surgery. I was basically given my life back.. From some of the literature I seem to find that you get better results with targeted therapy with higher amplification... am I wrong? 

[Deb W]

Hi,

I have MET Exon 14 skipping.  I was stage 1B in 3/19, had surgery ULL lobectomy and had clear follow-up scans.  In 4/20 I was diagnosed withI stage IV, recurrence micro metestases.    I have been in remission since August.  I did not learn of the MET mutation  (2nd opinion oncologist found it) until after I had already been put on carbo/alimta/Keytruda (changed oncologists).  They felt it was better to continue with this plan since it was working.  I have been on a maintenance plan with Keytruda,but now after 7 months  I've developed colitis so I'm on hold with the Keytruda.  I have been able to work through this ordeal, but I don't think I would have been able to had I not had my own practice and limited the number of clients I see.  I'll be meeting with my oncologist on Tuesday, and since I'm having the GI issues, maybe it's time to switch to a targeted therapy drug?  I'm not sure how we'll proceed.  I don't know the answer  to your last question.  Thanks for the reminder of the MET Crusaders.  I did join that group, but haven't been on the site.

Deb