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NSCLC Stage IV met neck tumor, rib_patella bone hot spots


catyroemer

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I was just diagnosed last week and am set for my first chemo treatment this Friday. I had a "stiff neck" since April...gradually got worse and had pain in neck, across left shoulder and down left arm. They did an MRI and found a torn rotator cuff (I drive a Cat 980G loader sometimes at work, and the steering/gear changing is left-handed). So that was my initial diagnosis. After showing up at the ER the next 2 weekends in excruciating pain as the muscle relaxers and anti-inflamatories were not touching the pain, the ER doc said he saw the MRI and I couldn't be having that much pain from the tear I have -- he told me to contact my PCP and tell him to MRI my neck...they did a neck MRI, a CT scan of my body torso to tip of my head and a full body bone scan....new diagnosis!

I have no idea what to expect at my appointment tomorrow, but whatever it is, if the goal is to get rid of this pain and all the 'loopy drugs', then I'm game! I'm a 60-yr old woman who's retiring as soon as we can get movin :D

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Welcome, Caty. This is a great website for information and support. I'm sorry about your diagnosis. That must have been a big shock. Do you know what kind of cancer (NSCLC or SCLC)? Have you met your oncologist yet? Do you know what treatment he has planned? I think there are a lot of things that can be done to relieve your pain. I hope it doesn't take very long for that to happen.

If chemo is part of the plan, ask about having a port installed. That's an easier way to infuse the meds. than an IV in your arm. You might want to call today and ask how long you will be at this appointment.

FYI, If the type of cancer hasn't been determined, I think you should wait until that info. is available before starting chemos. Different drugs are used for the two categories of lung cancers.

Best wishes for your appointment tomorrow. Please, please let us know how it goes.

Muriel

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Caty, I know I felt like I'd been hit with a sledgehammer when I was diangosed. I know you feel overwhelmed right now but slowly but surely you'll learn what to ask (and not ask!) and when to ask it. It's a whole different language but it comes with time. Don't know what your doctors have planned for you tomorrow in addition to chemo but in my experience, they feel like kind of separate entitites. In the beginning, I would go see my oncologist for weigh in, bp, temp, kind of routine stuff in addition to reporting on side effects, etc. Then I'd go for labs, either in a separate place or right in the infusion room. I think most facilities have infusion rooms where you sit in a chair and are hooked up to IV chemo in bags. Sounds like you weren't given the option of a port but you could ask about it. It's a separate surgery but well worth it.

My advice, talk to the chemo nurse(s). They are a fountain of information and gave me my earliest most important education. Of course, then I found all the generous people on this site.

Good luck, Judy in Key West

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Hi, Caty, welcome! Like Muriel, I was wondering about your cell type also, then saw it in the title of your post. Seems like we wouldn't have missed it there, but goes to show ya!

Let us know what specific chemo drugs you'll be getting and we can give you some first-hand tips on side effects and countermeasures. I'm glad you found us early in your cancer "career" -- it's a great group!

Aloha,

Ned

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I guess my diagnosis was 'hidden' in the title -- NSCLC Stage IV met neck tumor, rib and patella bone hot spots.

Also I have the chemo cocktail info: Avastin, Paclitaxel and Carboplatin.

I've got a quarter-sized tumor on my upper right lung lobe, a tumor on my neck/spine at c-6 -- if it hadn't been for the pain of the neck tumor pressing on nerves going to my left shoulder, I don't know how long it would've taken for them to discover the cancer -- I have no other symptoms.

Thank you for all your responses....any information on general stats on survival? 1 year, 2 years? less? more? I've got a bucket list that has lots of traveling and lots of fishing on it....any chance I'll get to do those things?

Caty

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Hi Caty,

Sorry you had the need to find us, but I'm glad you did. Do you know if your tumor is called a PANCOAST TUMOR? This is in the NSCLC family.

We have a few members here, Kasey, DonnaG etc.,etc., that had Pancoast tumors and your's sounds somewhat of what they have shared with us over the YEARS!!!!!!!!

Welcome to a wonderful support group. You'll find hope and wonderful and helpful info here.

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Hello Caty and welcome.Dont throw your fishing pole and nightcrawlers away yet. I would say with your attitude and God willing that you have alot of fishing ahead of you. Keep us up todate on your treatment. There are many stage 4 survivors here who would be glad to share with you.

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....any information on general stats on survival? 1 year, 2 years? less? more? I've got a bucket list that has lots of traveling and lots of fishing on it....any chance I'll get to do those things?

"Statistics" is a hot-button topic around here. Let me just refer you to something I wrote to a new member a few days ago. Sounds like you're quite healthy, so chances are you'd be out on the good end of any survival curve:

http://lungevity.org/l_community/viewto ... 507#365507

Aloha,

Ned

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Welcome caty! be sure to read the "good news". it has helped me so much. this site is wonderful. My hubby ended up in the ER due to extreme pain, after his first round of chemo the pain went away by 80% he said.so hopefully that will be your case. either way the doctors will help you with the pain.

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Welcome Caty,

I am a survivor or adenocarcinoma. I have been fighting the beast for 4 1/2 years with the last 2 1/2 at stage iv. Over the 4 years I have visited alaska, wyoming, seattle, florida, montana, canada, san francisco, san diego, las vegas, canada......and I am sure there is more that I have forgotten. I celebrated my 40th bday, welcomed a grandchild, watched my kids graduate, my daughter got engaged......

My list goes on and on. Try not to take the statistics too sweriously. We all respond differently to the treatments. There are many stage iv survivors enjoying each day.

My prayers are with you as you start your lung cancer journey. Let us know how we can help,

Wendy

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Hi Caty. I will add mine to the warm welcome you have already received. You are for sure still in shock and that is understandable. Good to hear you already have a treatment in place. You will find lots of support and information here if you seek it. Best wishes

Sandra

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Hi, Caty.

So sorry about your diagnosis, but you've come to the right place for support of every kind (emotional, spiritual, educational, informational... the list goes on).

Ned's right about statistics (be sure to click the link he provided in his 2nd message to you): Nowdays, there's just no telling.

Affectionately,

Carole

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

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