Need advice - Mom has NSCLC

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Need advice - Mom has NSCLC

by rdrew79 on Thu Apr 17, 2014 02:38 PM

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Hello. I need some advice from those of you that have been through this before. My mom has NSCLC; I don't know what stage because she won't tell me. She won't tell me much, so I am doing online research and drawing my own conclusions. What I do know is that the tumors are outside of her lungs, she's not doing chemo, and she's taking tarceva. I am her first of kin, her only family in state. If I call the doctor will they give me any information, even if she won't? If not, I am drawing the conclusion that she's at stage IV - am I off?

Thank you for your anticipated help.

RE: Need advice - Mom has NSCLC

by KimmieAnne on Thu Apr 17, 2014 03:55 PM

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Hello, Rdrew79.

I am KimmieAnne and I am a 58 year old female living with Stage 4 nsclc.  I was diagnosed in 2003 and given 2-3 years to live.  I did a year and a half of chemo, 6 months of radiation and took the oral medicine Irressa (no longer available on market).  I have been taking Tarceva 150mg daily for the past 7 years and it is saving my life.  In my case, the staging really doesn't matter to me anymore because I have out lived the "textbook" timeframe of this cancer.  When I began taking Tarceva, it was a drug prescribed as a second line of defense, when the first lines of defense (e.g. chemo, radiation) were unsuccessful.  This is a miracle drug and is now being widely prescribed as initial treatment or as first line of defense.  It is being celebrated because of its tumor shrinking ability.

Encourage your mom to take her Tarceva at the same time every day on an empty stomach (waiting an hour after to eat) or two hours after she has eaten (again, waiting an hour after to eat). 

I know this is a scary time for you both.  Keep the faith.  Take the Tarceva.  Never give up.

You are both in my prayers.

RE: Need advice - Mom has NSCLC

by rdrew79 on Thu Apr 17, 2014 04:03 PM

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You are a Godsend KimmieAnne. Thank you. Mom is 67 and we didn't even know she had cancer until 3 weeks ago when she had to be rushed to the ER because she woke up and couldn't walk. They did an emergency surgery that night after discovering a large tumor on the T7 - T9 vertebrae was causing the paralysis. Later, we were told that the tumor was growing from her lungs on to her spine. She hasn't told me much of anything at all really. So all I am doing is assuming. I am unfortunately not in a financial position where I can leave my job, so I go to work then go see her at the rehab center where she has been for the last 3 weeks. I am calling her doctor in about an hour when I go on my lunch break. Thank you once again, God Bless you KimmieAnne and may that miracle drug keep working it's miracles for you.

RE: Need advice - Mom has NSCLC

by booboo982 on Thu Apr 17, 2014 10:47 PM

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dr won't tell you unless your mom filled out form that says he can talk to you.  Tell youre mom her not keeping you informed just makes you think the worst and if she doesn't feel up to it or doesn't want to talk to you about it then please make it so the doctor can talk to you.  Good luck, prayers are with you

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