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lulu

Worried about my mom.

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Hello everyone, My name is Luann and I have been reading the posts since September,2005.That is when my mom was diagnosed with stage iv NSCLC. Mom had been complaining for years of lower back pain which was diagnosed as arthritis. The pain worsened and I convinced mom to get it checked, her primary care physician once again diagnosed it as arthritis. I asked him to send mom for an MRI as the pain was very severe. The MRI did not show much it did indicate a possible pathological ot stress fracture, this did warrent further testing.After running a gammit of tests which included CAT scan, Bone scan, bone marrow biopsy and numerous blood tests, the diagnosis still remained arthritis as all of the tests were negative. I was not satisfied due to the fact that moms back pain continue to worsen. I made an appointment with an orthopod, and he decided that mom had degenerative disc disease, that was not unusual for a 72 year old women.My family and primary care physician thought I was crazy putting mom through more tests, my brother and husband called me an alarmist. The orthopod decided that a nerve may be pinched in moms sacral area and he decided to do a minor surgical procedure called nerve decompression. A 1 hour surgery took 4 hous and when the Dr came out he told me that he found a tumor on moms spine that looked metastatic in nature. My heart sank, as a nurse I knew it wasn't good news. Moms pathology report came back poorly differentiated adenocarcinoma, primary unknown. After more tests a 3 cm tumor was found on the upper lobe of moms right lung.Mom has had 15 Radiation treatment to lower spine and 36 to chest wall. She also recieved weekly chemo of Taxol and Carboplatin in conjunction with radiation. She tolerated this well except for extreme fatigue and peripheral neuropathy. She started her second rond of chemo last week and the neuropathy worsened. Oncologist took her off neurontin and put her on Lyrica, He is also considering changing Taxol to Taxotere, which is harder on blood counts, from all the stats that I keep reading on Stage iv lung cancer I am afraid I won't have mom for long, but after reading your posts I have more hope, I want to thank all of you for giving me some hope as I am so scared for my mom. I know this is long but I have been trying to think of what to post since Sept. so I guess I consolodated a few months into this 1 post. Again Thank You.

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Luann,welcocme to our support family.Since you have been here reading for a while you aleady know how many good people are here.Sorry you and your mom are going thru this.

There are several here with stage 4 NSCLC and many are beating the odds and doing ok all things considered.

Are you and your mom both in Pa.

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Luann

Staging is just a number really and should not dictate how to live ones life with this disease. Let mom do as much or little when she wants. Enjoy and savor every moment.

Don't live in fear of dying with this disease.

Live with the courage of living.

Prayers for you an your family and ask if you need info on anything. Lots of experience here and compassion.

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Luann, wslcome! Glad you finally posted. Your mom's case has similarities to my wife's. She went through a barrage of tests for months before a tumor was found on her upper spine. Then further scans showed 5 bone mets. She was diagnosed as Stage IV NSCLC over three years ago and is still living a good life. Her first chemo was Taxotere and Carboplatin. It was hard on her, but well worth it, as it staved off the cancer. She has had three other chemos, and a lot of radiaton, since. Good luck to your mom. Don

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Luann..

Glad you found the site, but sorry you had to. One of the first things pounded into my head when i came on was that statistics mean NOTHING...and i wholeheartedly agree. Mom is 10 months in since diagnosis (primary in left lung, mediastinal lymphnode involvement and met to brain) and she's going along just fine. As of her last scan she wasn't lighting up anything but a single node near her neck. Please know that your mom has as good a shot at winning as any and that there is NO zero survivorship...there's always at least one who makes it and nothing says your mom (or mine, or any on here) aren't that one!

Prayers and good thoughts coming your way...

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Hi Luann,

I'm a nurse too, so sometimes I think that makes things even worse! I just wanted to tell you that I have learned so much from this group and please try to remember that everyone is different. Don't pay attention to the statistics. There are so many positive stories here about people living with stage IV lung cancer. Keep that hope!

Cathy

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Welcome Luann!

I have an assignment for you :) . As a former teacher I am good at that sort of thing, ya know :? ? I would like you to go to the NSCLC forum and look at ALL the STAGE 4 folks who are here............doing well.............enjoying life! There are plenty of them. Then try the Family/Caregiver forum and see how the folks there are coping. You will gain so much info, and hopefully be inspired some as well.

I am so sorry about your Mother, but there is still a lot of living for you both to do. Stay with us, okay?

Kasey

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Welcome Luann. Glad to hear that your Mom is taking chemo. Did they do any radiation to that surgical area that was the Metastasis? Keep us posted.

Donna G

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I am afraid I won't have mom for long, but after reading your posts I have more hope, I want to thank all of you for giving me some hope as I am so scared for my mom.

Hang onto HOPE. There ARE survivors of this disease, it CAN be done. Just remember that we are all here for you. Ask lots of questions and arm yourself with information about your moms diagnosis and possible treatment options. Knowledge is Power! Your mom's lucky to have you in her corner!

Keep us updated, I'm sending prayers for you and your mom.

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Luann,

It's so good to see you post-Welcome! Im glad you now know the proper diagnosis, but sorry it has to be cancer. Hoping she gets much needed pain relief. I'll be praying for ya'll and hang tight. Remember so many people with stage iv are still around. Try to stay positive.

Hugs,Beth

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WElcome Luann. You already sound like a great advocate for your mom and that's important when dealing with this beast. As others have said, don't pay attention to the stats! My 82 year old dad is a 5 1/2 survivor of stage IIIb. Yes, there have been bumps in the road but make sure you have some good doctors and they'll help your mom through things.

Keeping your family in my prayers.

gail p-m

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Hi Luan,

I don't have much to add to all the wonderful advice that others have said before me. So, I just wanted to say welcome and I am so sorry your mom and your family are facing this beast.

I will pray for you and your mom.

God Bless you

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Am so sorry to read about your mom. I can only imagine the pain you must be going through.. as a nurse you probably knowm ore than you want to know about cancer etc. I was a nurse myself before becoming disabled. One thing I learned with Keith is to always hold on to hope. He was given three months to live - but with hope and prayers - he lived 11 years longer than the doctors predicted. Hold onto your faith - and treasure each and every moment you have with your mother.

Melanie

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