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New to this site. My wife has stage 4 NSCLC


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Hip pain was her first symptom. She is 49, and a non-smoker, so this was a shock to say the least. It had spread to her bones (head, spine, shoulder, ribs, sternum, hips, and femur), but no organs. She is about to undergo her 6th round of chemo (carboplatin and toxotere). So far, after 4 rounds the primary in her lung has shrunk, most of the lymph nodes have shrunk (except for 1 that has grown slightly), and the bone tumors are simply holding their own with a "flare response".

It is difficult to find literature on the life expectancy of someone with such extensive spreading at the outset. She has handled treatment very well (except for the first nightmarish one) and is actually still teaching after sitting out a week for treatment.

Anybody have experience with a case like this?

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I don't personally have experience to share with you, but I can share hope from personnally witnessing the lung cancer journey's of members here and members of those I've supporting over the years in support groups and as a phone buddy.

I can tell you that I DO know at least 4 people who have had extensive metastasis at the time of diagnosis. These people have defying any statistic you might find. They've responded well to treatment and have gotten incredible results.

It happens.

One patient lived 8 years, treating his late stage LC as a chronic disease, tackling each new met. and health risk as they arrose...while he could not get "ahead" of the cancer, he and his medical team were directly behind it, like firefighters putting out small fires as they arose. He utilized each minute he was given after his diagnosis and I can say he lived each day as a gift- fully. Until the last 8 weeks or so, he had a good quality of life.

Then there are two patients, females, who are completely cancer free today. One even became a candidate for surgery after her initial chemotherpay shrank all tumors but two in one lung.

Then there is one patient who has stable disease. He is a stage IV NSCLC 2-year survivor and his cancer simply stopped growing after beginning Tarceva.

I've also know patients who were diagnosed with one localized tumor. Just one- and they didn't survive the year.

My point here is- statistics are flawed and don't reflect so many external issues. All patients are different. And there is HOPE for everyone.

Hang in there. Keep posting because it really does help. We are here for you and praying for your wifes success.

Best,

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Im sorry to hear about your wife. You will find some long term survivors here who will be able to help you. Never give up hope and be careful of whay you read on the internet. Much of it is outdated or just plain false. My prayers are with you and your wife for a successful treatment.

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I am so sorry to hear about your wife - here is some hope -

I was 48 at diagnosis - also a non smoker. The cancer had spread to my spine in 3 places and my brain.

3 years later I am considered NED - No Evidence of Disease. I did retire from teaching - teaching preschoolers is exhausting in the best of health - but besides that I am living a very active, very happy life.

Please don't get bogged down with life expectancies - they can put you in a deep funk - my first doctor gave me less than a year - I am so glad I didn't listen to him! I think of it like this - no one knows when they are going to die - I could get hit by a bus tomorrow - so I am thankful for each day I have.

Please come to this site with your questions or concerns - there are so many people here who understand what you are going through and are here to help.

I will add you and your wife to my prayers - for strength and peace -

Janet

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So very sorry about your wife. I am going through the same thing with my mother. She is 56, non smoker with stage 4 NSCLC. Her cancer has spread to her other lung, some lymph nodes, blood and bone. Its scary, and really hard but I am staying away from any statistics what-so-ever. Your wife is an individual, not a statistic. Just keep that in mind. Stay strong. I wish the best for you both.

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Sorry you had to find us but given your wife's situation, this is definitely the place to be. We are great in survival numbers and the good thing is, there is almost always someone who can relate personally to things in your wife's dx, treatments or side-effects. Keep us posted and ask any questions you have. We are here for you and for your wife.

Judy in Key West

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I agree with the others not to get bogged down into statistics. Everyone is different and if you read some of the stories on this site you will see many hopeful stories. My mom was also dx'd with mets to her bones and she just marked 3 years of survival.

Has you wife done any radiation for the mets to her bones? It was the first thing they did for my mom and it helped tremendously with the pain. She has done two rounds of radiation and three courses of chemo and is currently on Tarceva. She is pain free and enjoying life.

Susan

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Thaks for the works of encouragement. I have finally read some success

stories!

My wife is doing round 6 of chemo today. Radiation was not really considered as an option due to the extensive bone lesions. Her primary tumor is very close to the aorta, so they are being extra careful. We head to M.D. Anderson in 3-4 weeks to do scans for progress.

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