corinnecasebeer

I am so sorry to hear about your diagnosis. I'm glad you found Lungevity - I didn't find this resource for years! I too was diagnosed at 32, but they thought I was Stage 1 so I had surgery. A year later I was Stage IV, with brain mets. I highly recommend that you look into get off Xalkori and get on Certinib or Alectinib, since Xalkori doesn't protect the brain and these newer drugs do. I believe (but am not 100%) that if you have brain mets insurance will cover the new ones as a "first line therapy." Please join us over at ALKies Worldwide FB group! There are many people in your same position who can tell you what their experience was. Hang in there. Cori

I am so sorry to hear this. I was 32 when first diagnosed and 34 when I relapsed at stage four. I know the pain and grief you your family feel is indescribable and overwhelming, but I promise you it will get a little better every day. Okay...maybe not every day in the beginning, to be honest. But eventually, it gets better little by little, day by day. The only silver-lining I can offer you is that for some reason the ALK rearrangement seems to be "more treatable" than most mutations. We are less common than a lot of them, and yet we have a ton more drugs than even the really common mutations! And in that way we are lucky. We are the unlucky-lucky ones? Also, I have two recommendations for you. 1) get a second opinion, and maybe even a third. It took me months to do this because I was so overwhelmed, and I regret that decision every day. I personally know someone who is stage four and after chemo was able to have surgery and is now been clear of cancer for four years! Do not go to a good hospital, go to the best. I again made this mistake, please learn from me. Here are the best, in my opinion (for lung canver): MD Andersen, Massachusetts General - Dr. Alice Shaw, and University of Colorado - Dr Ross Camidge. Both of these two are ALK experts. If these aren't an option, there are many other wonderful lung cancer hospitals, you can find some recommendations at the Lungevity website and the Bonnie Addario website. 2) Join the Lungevity ALK and ALKies Worldwide Facebook pages. Here you will not only find support, but advice, help and more information about lung cancer and the ALK mutation than even most doctors know. https://www.facebook.com/groups/ALKIESWW/ https://www.facebook.com/groups/ALKlung/

Great! I'll look for you in the groups I'm going to Hope Summit as well. Wonderful choice with Alectinib, a lot of people in the ALK-ies group are on it and love it. I'm glad that you are saving some eggs first, my doctors didn't talk to me about this before and I didn't think about it. Keep us posted on your progress! -Cori

I'm so glad you found this resource! It took me years! I am 34 and Stage IV, ALK+ as well. I'm so sorry to hear that you have been going through all of this, and that you are now one of us. The "good" news is that things are drastically different for us, even versus a few years ago! There are now 3 Targeted Therapy drugs on the market and 3 in Phase 2/3 trails, and many more in Phase 1. Basically what I'm trying to say is that there is a LOT of hope and life to be lived. PLEASE come find the ALK-I.E.S Worldwide facebook group (and put it in the search bar just like that otherwise it won't come up). It isn't a support group - we only talk about the latest drugs, research and symptom/side effect management. Please join us and put your story on there - you will get TONS of advice and information, especially regarding the therapies you're debating. You will love it Wishing you the best, -Cori PS - a bunch of us, including the "young lung" ones, are going to HOPE Summit. I hope you go! There's a special Facebook group for us youngins, called "young lung support group." It's a great group as well.