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My son-Stage IV NSCLC ALK+


BDaddy52

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My son, age 33, was diagnosed Feb 2013 with Stage IV NSCLC. He is ALK+, so has been on Xalkori since then. His main tumor is shrinking and his bone mets appear stable. Nothing in the brain as far as we know. I am very interested in learning about every new development in treatment that might be "out of the box" and lead to a better prognosis. Second and third generation ALK inhibitors, immunotherapy, functional profiling...

I'm looking forward to reading and learning. Thanks for the site.

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BDaddy52 - I am so sorry about your son's diagnosis and wish you did not have reason to find us, but I'm glad you did. Two sites that you may want to check out are cancergrace.org, which is run by doctors and has a ton of medical information, including info on possible new drugs in the pipeline. They also answer questions, although of course in a general sort of way. They are a great resource. There is also clinicaltrials.gov, or you can simply google clinical trials and also alternative treatments. I'm sure others more knowledgeable than I will be along shortly and may have more specific info.

Please come back and let us know how you and your son are doing.

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Welcome BDAddy52,

I'm sorry you have a reason to be here, however we are here for you and your family. LUNGevity has an "Ask the Experts" page on the foundations web site where you can search previously asked questions &/or you can submit your own. Here is the link http://expertblog.lungevity.org/ask-the-experts/

We also have a few pages on Facebook where we post information almost as fast as we receive it, The pages names are LUNGevity Foundation, Lung Cancer Support Community, Survivors Resource Center & Caregiver Resource Center. We are also on Twitter and Google+. However you like to communicate we are pretty much there.

Please keep posting and keeping us updated on how you and your son are. We are here to support you both however we can.

Sincerely,

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  • 1 month later...

Hi Bdaddy52,

I definitely suggest visiting our ask the experts section of this website, which is powered by the experts at GRACE (which Diane mentioned) http://events.lungevity.org/site/PageSe ... TheExperts

You can also visit our research page to see the developments that are going on in terms of targeted therapy treatments. http://events.lungevity.org/site/PageSe ... ndedtoDate

Please come back and let us know what you've learned and please keep us posted on your son. It's very encouraging that he is doing so well. We have quite a few ALK survivors who are doing very well on Xalkori.

Best,

Katie

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