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Hi,

My wife has ALK+ NSCLC with brain metastases. She was diagnosed in 2013 and continues to fight the good fight till this day. 

The last 2 years have been a real challenge with so many ups and downs. 

After exhausting all the 'typical' treatment protocols over the years (WBRT, Stereotactic Radiotherapy, Crizotinib, Brigatinib, Alectinib, Immunotherapy, Chemotherapy, Avastin and near surgery), we're now trying different combination of drugs and treatment protocols. She has had NGS done and also tests positive for MTOR, RET, CDKN2A and TP53.

I wanted to join the forum to be able to exchange experiences and perhaps find out about drug combinations that have worked for similar patients. I'm also happy to share our experiences. 

I'm very very thankful for her faith and strength and our community of love and support. Through it all, even through the toughest of times, I have to admit that God was faithful (and He continues to be). 


God bless,
Martin

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Hi Martin.  Welcome to this forum.  I’m sorry to hear of your wife’s diagnosis.  Your post and faith come across strong and optimistic.  Two great weapons in this fight.  I don’t have any specific experience with your questions but I hope you find some answers here and you both continue the fight.  

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Hello Martin,

Hello.  It’s so nice to meet you. I was diagnosed Stage IV ALK Positive NSCLC with small bone Mets in September, 2018. Due to the severity of my symptoms upon diagnosis, I received one dose of carbo/Altimta/Keytruda while waiting for the molecular testing.  I started Alectinib in late October.  

I read your posts with deep appreciation, people like me who are newly diagnosed have benefited from your wife’s perseverance. I would love to learn more about your experience. During each visit, my onc reviews the “plan b” which will be either Brigatinib or the new TKI  Loratinib until there is something new  

As you know, ALK is very rare, it’s hard to find others to share experiences.  The ALKies have organized with a formal infrastructure, www.alkpositive.org, they have a Facebook page with over 1400 members in 41 countries and they are hosting the Second Annual ALK Summit in Atlanta August 2-4. A leading ALK researcher Alice Shaw MD from Dana Farber is the keynote speaker. 

I’m an avid watcher of The Lung Cancer Living Room on Youtube (Go2Foundation, Formerly the Bonnie J Addario Foundation).  Recently there was a segment on driver mutations with Dr David Carbone.  He had a brief update on ALK that indicated your wife’s course of treatment consisting of combination inhibitors is the future path for ALK due to the number of associated sub- mutations.  

Your unshakable Faith has been a cornerstone of this process- as it has for us.  On the days we need some guidance we turn to Hebrews 10 35-36. Faith, patience and confidence will pay off. 

Since I’m so new to this, my apologies for not being able to offer some type of wisdom here.  I do have a wickedly good sense of humor and will be happy to jump in to offer continued support.  

Blessings to you! 

Michelle

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Martin,

God bless your wife and family.  It sounds like you all have been on quite a journey.  I know that you and your wife's experience can benefit so many and look forward to hearing more from you.  

One final note - thank you for being there for your wife and reaching out to share your experiences and gain new knowledge.  I have been on this journey with my mother since her original diagnosis in 2015 and have seen so many without supporting families and strong advocates.  

Take Care,

Steff

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Hi Martin,

Welcome to the forum; sorry you need to be here, but glad you posted.  This cancer journey is unique to the disease and also the individual.  I don't have your wife's type of cancer, but others do and you'll get some super counsel and information from them.  For my part I'll keep your wife, family and yourself in my prayers.

Lou

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