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Mom (62) diagnosed Stage 4, NSCLC????


Trish

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Hi--I hope you can help me!

My mom was just dx 4-19-04 with stage 4 nonsmall cell lung cancer. She had breast cancer 5 years ago but doctor said this primary site a tumor in the left lung.

Here is the situation. In February, my dad told mom to go get her cough checked out. An x-ray showed a mass so they did a bronch scope mid-March and said 1/4 of the left lung was collapsed. The tissue sample came back as noncancerous. They scheduled a pin-prick biopsy of the lung mass the 2nd week of April. This is the part where my mom and dad had to tell us something was going on. The prick hole wouldn't close right in the lung and they wanted to keep her overnight so my dad spilled the beans. She didn't want to worry us until she knew something.

April 19th I went to the oncologist with my mom and dad. He said she was stage 4 NSCLC (didn't know what type). Said she had the primary tumor on her left lung which was causing the lung to partially collapse, there were 5 lesions/tumors on her liver (one was 4 cm), both femurs had cancer in the bone marrow, there were "spots" on her ribs, spine and at the base of her skull. He said she had less than 6 months if she did nothing but that chemo could give her some pain relief and more time.

Needless to say, we were stunned. My mom had lost a lot of weight and had really bad back pain--she said she pulled a muscle, and had bad nausea. She decided to start the chemo 2 days later. She is set up to do chemo on day l and 8 of the month and start a new cycle on the 21st of each month. He said 6 cycles would be the most she could do and that would be mid August.

She could not eat or even tolerate instant breakfast or ensure but could drink only fruit punch gaterade. I had to take her in for IV bags for the nausea because she tried 4 different nausea meds with no help.

Today she saw the oncologist but would not let me or my dad go. He scheduled her for a CAT scan in 2 weeks. He was happy with her liver numbers but said her x-ray didn't show any difference but he said CAT scan shows differences much better.

My mom has felt good the last 3 days and ate some and gotten out of her chair and seems in good spirits but she hasn't had chemo for a week.

I just don't know what to think. Is it better that the cancer shows in the marrow but not the bone and is the likelihood of zapping it better? I am

past the initial shock of the dx but I need someone to be frank with my because I want to know what I should be asking and looking for. I want to be supportive because my mom is my best friend but I also know what she considers to be quality of life.

What do you think of the dx and any suggestions?

Thank you in advance for taking the time to read/answer me!

Trish

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Trish,

I don't know about bone mets, I'm sorry... I think that you, your father and your mother should have a heart-to-heart talk on just what she wants to do and how far she wants to go. It's fine to ask again further down the road if she's sure about the NEXT step, just don't dwell on it or try to get her to "see it your way". I don't mean don't tell her your view, but don't make her feel guilty about her choice, the choices are very hard to make in the first place...

Support her with whatever she chooses. If you think she needs more information to make a decision, find it and provide her with it... The fact that she didn't want anyone with her at her last appointment is kinda suspicious to me, and I would wonder if she was being honest in her "replay" of the meeting... Mom's are ones to lie if they think it will be easier on those they love - it's just how they are (and don't tell anyone in MY family I said that). I don't know if she's signed any releases so you or your dad can get the information she received, but that might be something to do, get the 'scoop'.

I hope you find some of the answers you are looking for regarding treatment and I apologize that I can't give you more information on the medical questions. Welcome to the board, sorry you have reason to be here.

All my best,

Becky

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Becky,

Thanks for replying!

My mom did sign conscent for my dad and I to be allowed to call and speak with nurses and doctor. I'm sure I'll be calling tomorrow.

I am trully confused with what a "bone met" is. If she has cancerous cells in her bone marrow of her femurs, is that considered a "met?" And how can a lesion and tumor on her liver be the same. He said one lesion was 4 cm which seems to be rather large and explain the problem she was having with not being able to eat.

When they say there are spots on the ribs and spine and base of skull I am so confused. It there cancer just running through those areas or is there a tumor there? Does the chemo just totally eat/ the cancer.

And when my mom is having such bad pain after chemo I wonder if it is because it is helping???

If anyone has experiences to help me I would really appreciate it!

Trish

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Trish,

I am very sorry for the news you have recently received from the doctor. It is very confusing and frightening. (I am in a situation quite similar to yours & also trying to learn all that I can.)

There will be some very helpful and knowledgeable people who will come along to help you here.

Best of Luck to you and yours.

Ven

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Guest Phyllis

I am sorry your mom is having to go through this. I agree with Becky that your mom has to be allowed to make her own decisions. I know there are times when I want privacy to talk to my doctor without worrying about what a caregiver may react or whatever.

Unfortunately, side effects and pain and stuff does not really indicate one way or the other whether or not chemo is working. These drugs might just turn things around and things will get better. This disease is so unpredictable. That is why I hate when doctors start bringing out the statistics. Don't get discouraged. I have had a lot of up and down times. Take care.

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A lesion and a tumor are the same thing, as far as I can tell. That is just a spot where there is active cancer cells. The chemo travels everywhere in the body, so it tries to eat the cancer wherever it is. Radiation and surgery are local treatments, they can get after particular spots of cancer. But if the cancer has spread, as in your mom's case, chemo will be required because there is microscopic activity that cannot be detected and can only be attacked by chemo.

Good luck. And I agree with Becky - as always, what is it about Beckys around here that make them so wise? - that your mother needs to be the captain and live life the way she wants to, and make her own decisions. Provide input, provide support, but ultimately we as caregivers must understand that they are all the patient's decisions.

Curtis

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Trish,

See if the doctor will make an appointment to talk to you and your dad, since your mom has signed the forms. I get the feeling she's very uncomfortable discussing the course of her disease with you or around you. Bring a pen and paper, and makea note of questions you want to task and what the answers are.

Then, If your mother will allow it, one of you should go with her and write down questions to ask the doctor and write down the answers for your questions as well as hers.

That way you will all be on the same page, which is extremely helpful.

I think that's the best way you can help her, if as you said she has signed to allow you both full access to her medical data. I remember forgetting all kinds of things, even before I left the office, I know I should have had someone with me and writing things down. It wasn't an option.

She's likely every bit as floored at this as you are, plus she's trying to protect you. Take that as a measure of her love for you all.

As Becky said, it is her decision, and you don't have to like it, just work with it.

Prayers, always,

XOXOXOX

MaryAnn

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Trish, your mom's case is similar to my wife's, except my wife did not have liver mets. I don't know about the distinction between bone marrow and the bone, but my wife had originally 5 mets in skull, ribs, upper spine, right fibula and left hip. She also later developed one on the sacrum. Her chemo and radiation treatments were successful, and she is now on Aredia (was on Zometa for a while) -- these meds help prevent new bone mets, and it is working for her. She is almost 20 months from diagnosis and was given about 9 months. Hold on to your hope. I don't think your mother should go for testing, doctor's visits, etc. alone. She needs support all the way and another pair of eyes and ears. I would insist she take someone every time. It is in her best interest. Keep us posted. Don

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Dear Trish,

You seem to be in a difficult position since your Mom is the one who is keeping you out of the Dr.,s office! She must be very brave to want to face all this alone. Perhaps she will come around and see the sense in taking you and your Dad into her confidence.I do hope so as it would be make it so much easier for you to be able to your Mom help herself.

Praying that things will go well.

Paddy

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I really appreciate those of you who have taken the time to post back to me!

My mom is back to having the nausea again since she had her chemo on Thursday. This is her lst day of the 2nd cycle of chemo. She had taken her morphine patch (for 72 hr. relief) but started having the pains in her ribs again Friday morning. She is worried that is a bad sign. She thinks she shouldn't be having the pains during chemo if it is working. She worries that the rib/back/liver pain is because the tumors are growing. She will have the CAT scan next week to see if there is any change from April 19th.

Did I mention that my mom has not lost her hair yet? She said she is not touching it in hopes she might not lose it but she lost it right away when she had chemo for her breast cancer 5 years ago. I think the chemo she is receiving now is supposed more agressive too.

Anyway, my dad is having a real tough time too. He was going to retire but he thinks it is better to keep busy than sit around and dwell. My mom has always stayed home and took care of me, my brother, and sister when we were little, and paid all the bills and took care of the house, meals, etc. He is trying to figure everything out and do it the way my mom did it--she is very particular!

We are hopeful that this reduces the tumors and slows the cancer down. My husband and I will be able to help out even more because we are both school teachers and only have this next week of school left. We can take our 2 kids out to their farm and they have plenty of animals to occupy them while we help out around the house, etc.

Thank you again for your support! Trish

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Hi Trish,

I'm sorry I missed this post and am late in replying to you. Welcome to LCSC! You sound like such a wonderful, loving daughter. I bet your parents are really glad they have you around to help them out. Sounds like your mom normally takes care of a lot of the stuff around the house (paying bills, etc.), and since your dad is going to continue to work, I'm sure they will be happy to have you help as much as you can.

Keep us posted on your mom's progress.

God bless you,

Peggy

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