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New to Group/Mother has NSCLC


jacobson1972

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Hello, I'm Beth from MI. My mom was diagnosed 2 weeks ago with non small cell lung cancer, squamous cell, stage 4. It has spread to her bones and lymphnodes. She is 61 and has been told she has 4 months with no treatment, and up to 16 months depending on how well she responds to chemo.

She had 8 sessions of radiation to try and shrink the tumor that is pressing on her L1 vertebre, causing a lot of back and leg pain. The back pain has gotten a little better, but the leg pain is unbearable. She is on morphine, but it doesn't seem to help.

We feel like her oncologist is dragging her feet. She was in the hosptal for over a week, and her oncologist was not able to schedule her post hospital consultation until over a week later. Her appt is tomorrow.

Sorry to ramble so much. I'm glad to have found this site.

Beth

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Wecome Beth, I am so sorry to hear of your mother's problems. You have come to the best place in the world for support and information.

DO NOT ever give up....learn and fight. There can be a lot of wonderful times yet to come, if you let them.

I was given one year, 25 months ago. I am having a ball, working and fishing full time.

Please visit us often.

jim

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Hey there. I'm so sorry that you have to be here, but I know that you will find hope and encouragement from this group. My dad was diagnosed in May, so I can relate. My best advice to you is to advocate for your mom as much as you can. I had to complain to get my dad's first oncology appointment sooner. Also, please try not to listen to statistics. As you will find with this group, there are many people here who are living with this disease and doing well.

Take care,

Cathy

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Welcome, Beth! I lived in Detroit 1960-64 (grad student at Wayne State U.) and have been to Kalamazoo.

My wife's situation is similar to your mom's, so take heart and hope. Lucie is almost a 3-year survivor now of NSCLC, Stage IV. She has had several recurrences and has responded well to the radiation and chemo treatments. Keep us posted on you and your mom. Don

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Hi Beth,

Welcome here. We are glad you joined us. The shock of finding out your mom has LC had to be devestating... I am so sorry, but LC does not mean a death sentence. So get that out of your mind. There is so much treatment out there now. She just has to find the right Onocologist and the right treatment that will work for her.

There are many people here who are stage 1V and were also given stastistics and they are still here.

Once she starts treatment, you both will feel better. Try to go with her to her appointments and if you have questions write it down, and also write down what the doctors is saying. That way you will not forget anything.

Keep a positive attitude and faith. You mom will get through this.

It would not hurt to get a 2nd opinion and maybe a new Onocologist you would feel more comfortable with.

There may be someone on this site from you area who can recommend one for a 2nd opinion.

We are here to give you and your mom support and prayers.

Sending good vibes out to you mom.

Keep us posted.

Maryanne

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Hi Beth,

Sorry you are here but very glad you've found us. This is a wonderfully supportive, informative website and please come often...

I, too, can relate as my mom was dx'd not too long ago and is undergoing radiation/chemo.

You mentioned that you are concerned that perhaps her oncologist was dragging her feet..if I may suggest, be as open as possible with your mom's doc about all of your concerns and please be sure to ask lots of questions.

When I first joined here, someone suggested that I become as informed as possible about this disease and that piece of advice has proved very helpful.

God Bless you and yours, Beth

Gentle hugs for you both

Love and light

Libby

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Hi Beth!

My Mom has been diagnosed w/ stage 4 also. We went through some very tough times, and made the mistake of listening to statistics. Now she is volunteering at my kids' school everyday, going to visit friends 2 states away, and really living her life.

These first few weeks are such a trying time. Let us know if we can help in any way.

:) Kelly

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Hi Beth. I just wanted to add to the welcomes, though I am sorry you need us. I have found that for both my own peace of mind and my mom's treatment, knowledge is power!!

I have found an incredible amount of knowledge, support and (shockingly) love here. I do hope you'll avail yourself of the same.

It's so scary to have a parent with LC. I won't ever be the same, even though my mom is recovering now. All I can do is live my life and make hers as happy and healthy as possible.

xoxo

bunny

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Hi Beth,

Welcome. Is your mom seeing Dr. Liepman? If so, I did some research and she seems pretty impressive. Because she has a good reputation she may be highly in demand which means appointments may not be as easy to get as you need. It's frustrating, isn't it?

I had to wait a week to even meet the first oncologist I was referred to because he was on vacation. Longest week of my life - I was sure my chances were dropping with every moment that slipped away. Luckily, I was wrong. Talk to the doctor about your concerns when you see her - if you don't get a good feeling about working with her, get a second opinion. You and your mom have more power and control than you think.

Sending caring thoughts that you'll have a good visit,

Leslie

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Thanks to everyone for the wonderful replies. You don't even know how much better I feel just reading your kind words.

My mom's appt went good. My parents are very happy with the oncologist, and truly believe that their initial negative feelings towards here were because she was the messenger. She seems to be very caring and compassionate. For those of you from MI, it's Dr. Tobin from the Breslin Cancer Center.

They will do two additional rounds of radiation, and are still trying to get her pain under control. She was admitted again Monday night because of excruciating leg and back pain. She is seeing a pain specialist this morning, and we are thinking they will do a nerve block.

My mom is very interested in clinical trials, so she will be entering the clinical trial for the drug ERLOTINIB (other name, TARCEVA, OSI-774).

Thanks again for your support. It is very encouraging to read all of the success stories here.

Beth

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Hello Beth and welcome to LCSC. Hang in there, I know the first few weeks are some of the hardest and it's difficult to have patience with the issues of scheduling tests and getting results; but managing her pain should be her doctor's priority. If you think another oncologist would handle her situation better, now is the time to find one.

Looking forward to hearing from you soon with news that your mother is doing better and without pain.

Love,

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