Benjamin’s Story

Site created on March 12, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We are so lucky to have such wonderful friends and family who have been such a support during this crazy time! We will do our best to share with everyone on here when we have new updates with treatment and any progress that is going on.  We really appreciate your support and words of hope and encouragement.

Lots of love,
Ben, Sari, and Lily.

Quick  backstory-

Ben was diagnosed with Stage IV Adenocarcinoma, a type of  Non-Small Cell Lung Cancer (NSCLC),  in November 2016.  We quickly learned about mutations of lung cancer. Ben's primary mutation is EGFR and along with that, he had  a baseline resistance mutation called T790m. The T790m is a resistant gene that individuals  can develop after being treated with targeted therapies (which the best form of treatment for his type of lung cancer). It is very uncommon for individuals to be diagnosed  with the baseline resistant gene, so this excluded any 1st line forms of targeted therapy treatment. The FDA had  approved Tagrisso just months prior which was the first 2nd line treatment as a targeted therapy for individuals that have built a resistance to 1st line medications. Thankfully, we were referred to an amazing oncologist at Hopkins who started Ben on Tagrisso (a single pill taken daily) immediately. Ben had such positive results for the initial 10 months, but slowly the cancer started progressing. Currently, there are not any FDA approved regimens for 3rd line targeted therapies, so our oncologist suggested some clinical trials. We chose a promising clinical trial that targets another resistance gene called cMet. Ben started that clinical trial in Fairfax, VA on January 22nd, 2019 and is currently receiving intravenous treatment every 2 weeks. This treatment is definitely not as easy as the single pill, but he is working, playing with Lily, and living life with those amazing dimples and smile everyday.

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