Wyde1340
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Posts:1
I was dx Stage 4 squamous NSCLC with MET amplification mutation. I have been looking for 3 years for others that have squamous with any mutation. I'm told I'm a bit of a unicorn, but was looking to connect with others.
I'm on the targeted therapy, Crizotinib, and have been stable for a little over 3 years.
Thank you!
Forums
Reply # - July 15, 2022, 12:41 PM
Hi Wyde, Welcome to Grace. I…
Hi Wyde, Welcome to Grace. I'm so sorry you have to be here and hope you can connect with others. You ARE a unicorn as you have certainly found. I'm glad you were tested for mutations and you are an excellent example of why it's so important to get those tests whether squamous or adenocarcinoma.
I'm a lay person but have been in contact with 100s of people diagnosed with nsclc and you are only the 2nd person I've met with squamous nsclc tested to have a mutation. Unfortunately, I feel that's not entirely due to those people not existing but not tested. I understand today, it's standard practice with lung cancer specialists to test those with squam (edit to say: test people with squamous if they are younger or never/very light smoking history) and nonsquam but not yet standard practice for all.
Much much congratulations on 3 years on crizotinib. Grace is having a Targeted Therapies Forum tomorrow with several lung cancer specialist presenting and answering questions. I hope you can attend. It's live and free to all. I'll add a link in a few. There will be discussion with patient advocates who may be able to steer you towards others.
How have you done on crizotinib? Hopefully few side effects and living life as well as possible. Please keep in touch, I hope you find others, and let us know if you did so we can pass the info along...unicorns are so special ;)
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - July 15, 2022, 07:53 PM
I hope you found this page…
I hope you found this page about the live forum already. It's tomorrow 9am eastern time.
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.