aceking Posted September 16, 2005 Share Posted September 16, 2005 Hi, everyone. This is my first post, although I've been "lurking" on the board for over a year. Here's why. In Aug. '04, a very good friend of mine was diagnosed with NSCLC stage 3b. In his 30's, non-smoker, HUGE shock to all! I knew next to nothing about LC, but he explained that he had adenocarcinoma and could not have surgery. I immediately thought, "Oh no! No Way! There must be some new information out there!" I immediately googled every term he told me and found this site. Thank God! Although I don't post because I want him to have a "clean slate" if and when he wants to use the board as support, I started doing as much research as I could about new, experimental, and promising treatments. This board is so unique, well run, supportive, and valuable! My friend was put on conventional carbo/taxol,(yucky side FX) and then Tarceva. Stable-ish with slight growth, but nothing to write home about. He recently switched Dr's and is now at Cedars Sinai in L.A. O.k. - long story - but it gets better!!! Through some of you great people, I learned of a few people on the board being approved by their insurance for Avastin. I let him know as he was just going to begin a new therapy with Gemzar and Alimta, that MAYBE, he could get his onc to get him approved for Avastin. He immediately contacted his onc, and he is the FIRST LC patient at Cedars to be approved for Avastin by his insurance!!! Even better, he went to Cedars for his final treatment of Alimta/Gemzar/Avastin on Tuesday of this week, and his onc said that he did not need to have the treatment -that he could take a much needed break because he had SHRINKAGE!!! and STABILITY!!!!! His onc was STOKED! My friend was doing backflips, as he has had s rough road. I wanted to post this info because I would never have known about Avastin if it weren't for this board, and I'm SO thankful to you all! I asked him if it was OK to post this info because maybe some of you other folks, maybe at Cedars, even, can push your onc to get Avastin aproved by your insurance. Thank you all again so much, and I will post new developments, or maybe my friend will even post himself. You guys are awesome! [/i] Quote Link to comment Share on other sites More sharing options...
melindasue37 Posted September 16, 2005 Share Posted September 16, 2005 What an amazing story...and what a great friend you are. I hope your friend continues to have such great success!! Keep us posted Melinda Quote Link to comment Share on other sites More sharing options...
bunny Posted September 16, 2005 Share Posted September 16, 2005 that's an amazing story, and you are one incredible friend! an ace you might even say, ar ar ar. keep us posted, and I am so glad you got so much from this site. I did too, for my mother's LC care. xoxo bunny Quote Link to comment Share on other sites More sharing options...
Andrea Posted September 16, 2005 Share Posted September 16, 2005 Yay!!!! So glad you posted. Everyone--Aceking is SO cool, such a nice person!!!! I've had the pleasure of corresponding with her ever since she gave me a recipe. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted September 16, 2005 Share Posted September 16, 2005 Glad you posted and shared what you have learned, especially that your friend is doing so well. Welcome. Don Quote Link to comment Share on other sites More sharing options...
Patkid Posted September 16, 2005 Share Posted September 16, 2005 Welcome and nice to meecha! Brian and Pat Quote Link to comment Share on other sites More sharing options...
Donna G Posted September 16, 2005 Share Posted September 16, 2005 Love your story that you shared. Thanks so much, please now come back and give us the happy ending that your friend has another good buddy called NED, no evidence of disease! Donna G Quote Link to comment Share on other sites More sharing options...
Kaffie Posted September 17, 2005 Share Posted September 17, 2005 aceking, What an awsome friend you are, please keep us posted and hey, there's no reason why you BOTH can't post. Kathy Quote Link to comment Share on other sites More sharing options...
Don M Posted September 17, 2005 Share Posted September 17, 2005 Hi: It is good to see that your friend has found stability in his cancer. Don M Quote Link to comment Share on other sites More sharing options...
carolhg Posted September 17, 2005 Share Posted September 17, 2005 WHAT GREAT NEWS AND YOU ARE A REALLY GREAT FRIEND!!! I am very happy for you and your friend. Carol Quote Link to comment Share on other sites More sharing options...
Nushka Posted September 17, 2005 Share Posted September 17, 2005 Welcome Aceking. Glad to hear that your friend is doing so well. Thank you for posting the information about avastin. We all try to share. I hope your friend will decide to post but that is not a reason why you can't post as well. Would love to hear from both of you. Nina Quote Link to comment Share on other sites More sharing options...
Maryanne Posted September 17, 2005 Share Posted September 17, 2005 Hi Ace, First of all, welcome, and I am thrilled that you came out of the shadows to share your friends good fortune. Now wonder he was doing flip flops. This is just what he needed. You are a life saver to him, his guardian angel, as you did not give up and read, gained knowledge of something you knew nothing about and by doing this you found the right treatment for him. Koodoos to his doctor who help provide the informaion to the insurance company who approved it. Congratulations on this being the first at that hospital to get approval. How exciting that you are the first to get this drup approved and this could help other patients get approval in the furture. The ripple "effect. You must feel real good. You should!!! Your friend is off chemo. Those lousy side effects will be leaving and he will be feeling so much better. I would toast you and your friend at Cindi's Bar, but Cindi is not here, as she is having her computer fixed. See even computers get sick, some viruses that, if left untreated, would kill all the information on its hard drive. So, they also have to find the right "treatment" to cure it. Sorry got off track there, back to the bar..Frank who can open the bar in Cindi's absence, is on vacation. So this timing is not so good. So when you and your friend go out for a drink, it could be champaigne, a chocolate milkshake, or Starbucks coffee, whatever, just make sure you lift your glasses and say "this toast is from your friends at LCSC".... and clink those glasses together. Enjoy your good news. You were so excitied, in your post, it wore off. CELEBRATION TIME... COME ON..... The best of luck to you both. Would also love for him or you or both to join us. Maryanne Quote Link to comment Share on other sites More sharing options...
kamataca Posted September 17, 2005 Share Posted September 17, 2005 How cool! Can't wait to hear the updates. , Kelly Quote Link to comment Share on other sites More sharing options...
Leslie221 Posted September 17, 2005 Share Posted September 17, 2005 Love the good news! You're a good friend! Here's to many many more good news reports about your friend. Leslie Quote Link to comment Share on other sites More sharing options...
jang Posted September 18, 2005 Share Posted September 18, 2005 Welcome and thanks for sharing that inspiring story! Quote Link to comment Share on other sites More sharing options...
richinsdakota Posted September 19, 2005 Share Posted September 19, 2005 Welcome , thats a great story...look forward to ur posts and friends too. Rich B. Quote Link to comment Share on other sites More sharing options...
Don M Posted September 19, 2005 Share Posted September 19, 2005 Welcome; I am glad to see your freind is holding the cancer at bay. Don M Quote Link to comment Share on other sites More sharing options...
ma's kid Posted September 19, 2005 Share Posted September 19, 2005 Wow! Continued good thoughts for your friend. Please check in with us often. Love and light Libby Quote Link to comment Share on other sites More sharing options...
lilyjohn Posted September 21, 2005 Share Posted September 21, 2005 wonderful story. Please keep us updated and stay on top of all the new information that comes along. You can never have too much. Your friend is very lucky to have you on his side Quote Link to comment Share on other sites More sharing options...
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