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Just found the site last night - my mom is stage IV LC


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Guest sunflower

Hi. My Mom (age 60, heavy smoker until quitting 1 1/2 months ago) was diagnosed in the last week with Stage IV LC that is in both lungs and has met to the brain. She was feeling good until she got the prognosis of 3-6 months without chemo. She is going down hill quickly and is very depressed. The doctors weren't recommending chemo because of her brain cancer and they weren't sure it would extend her life.

She is going for a pet scan today because she originally asked to have the chemo anyway because she didn't want to give up. The chemo they would give her is navelbine. She is now rethinking the chemo because if she only has a few months she doesn't want to be sick. She is very stressed and needs something to calm her and raise her spirits. Has anyone taken anti-depressants or anti-anxiety medication that can help? So far the doctor just gave her a few sleeping pills because she hasn't been able to sleep but it is not helping her depression. Also, it has been hard because the doctor is hard to reach and definitely has no bedside manner.

My self, my siblings and our children are all going to Florida to visit my Mom next week. She is trying to fit a lifetime of activities with the kids into a few days. I wanted to make sure she enjoys the visit and isn't too stressed. She is already worried that the way she looks from the steroids will scare the kids.

I was glad to come across your site last night. It is hard to be in this situation without being sad and your optimism and determination made me feel better for the first time in a few days.

Thanks for your help.

Patti

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First, welcome and I am glad you found us. In answer to your question, has any of us been depressed and needed a pill for it, YES The vast majority of us are overwhelmed with the diagnosis. It is like the stages of severe grief. I am so glad you are going to be able to visit her. Laughter, happiness are good medicine. Hope is good medicine. I had chemo and radiation before I had surgery and chemo after, it was douable, I was very tired but perhaps if I had taken an antidepresent sooner I would not have been draged down by my emotions so much. Please keep us posted on your Mom and how the trip went. Donna G

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ok, my opinion, your moms dr. stinks.

RUN to another one who will put your moms interest first and do chemo. its her life not his and he (as far as I know) is not god and can't tell her how long she has to live.

Chemo may work, no one knows, so why not try it. Allot of people on her have tried several types of chemo before one worked, some worked the first time and went into remission. Whole Brain Radiation (WBR) does work as well although most dr. dont do it at the same time, unless its necessary and urgent.

my mom had NSCLC and brain mets, She didn't die from the mets either. My dad has SCLC and had brain mets.

get her a second opinion immediately.

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Hi, Patti, and welcome to this site. I agree that your mom should try the chemo. My wife just went off Navelbine and it worked well for her. No one, not even the docs, can tell an individual how long they will live. I think the treatment is worth it to give your mom more months, if not years. Don

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Guest sunflower

I am overwhelmed by the caring support of this forum. My Mom read your replies to my post and she is now asking questions. She didn't even know there was more than one type of lung cancer. She has a call in to the nurse right now to find out the type of LC she has. I believe knowledge is power and we are now feeling a little more in control with your help.

Does any one have any ideas on how to find another oncologist for a second opinion? She lives in Central Florida (on the west coast).

Thanks again for lifting our spirits.

Patti

P.S. Sorry I posted the same post twice.

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Hi Patti: Any large Cancer center would be a good place to look for a second opinion. I see that the University of Florida has a lung cancer treatment facility in Gainsville (352) 392-2877. They may have clinical trials that your mom could try. Give them a call. There is one in In Jacksonville (904) 244-3273, too. I hope the best for you and your mom.

Don M

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Welcome Patti, I think getting a new oncologist is a good idea. Your mom

does not need to put up with his poor bedside manners. There are alot

of good doctors out there. Plus I agree with the post above this doctor is

not god and does not know how long your mom has left. Hang in there and enjoy your visit with mom. My thoughts are with you, Haylee

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Welcome Patti, sorry you had to come here, but it is the best place for information and support. Everyone here is either a victim or a caregiver.

I would say a second opinion is always an option. I personally do not know about west Fla. being from the East but there are many people here who can help you.

Also, let your mom know that statistics do not mean anything. As you read posts on this website you will see how many people have beaten the statistics. If she is not a candidate for Chemo, then there is always clinical trials.

Take care

Maryanne

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I'm assuming that Tampa/St.Pete/Clearwater is your closest LARGE metro center. If so check out this website. Moffitt Cancer Center in Tampa. (You may have to copy the link, rather than just click on it.)

If you are closer to Orlando, then you have many choices. MD Anderson (Houston) offers lots of services, research, etc. and is/was ranked 1st among Cancer Centers. They have a facility in Orlando also. There are many competent, highly qualified, wonderful oncologists in the Orlando area, too.

You all deserve a caring oncologist who can relate positively to the patient and family.

http://cc.ucsf.edu/links/centers.html

Muriel K

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Guest sunflower

Thanks again for all of your helpful advice. My mom woke up Friday morning, showered and called her doctor first thing to find out what kind of LC she has. No one called her back :( I'm going to Florida tomorrow, so hopefully I can get more information. Her doctor won't see her until next Thursday. P.S. Her doctor is affiliated with a hospital in Gainesville.

Thanks again.

Patti

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hi patti,

I'm not on here very often, but I have found it to be a great source of information and hope. best of all is reading other people's stories about how they are beating cancer. :) so I just wanted to share with you that, last march, my mom was diagnosed similarly to your mom. she had LC in both lungs and was treated with radiation daily and weekly chemo. she developed a brain met in aug and was treated with the gamma knife. it's been a very rough road. today my mom isn't NED but she's doing really well and even thinking of going back to work.

I know every case is different, but I agree with the other posters that you should get a second opinion. it sounds like your mom is willing to fight. get her the help that she needs to beat cancer. it can be done!

nandie

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Guest sunflower

I am in Florida visiting my Mom. She is steadily getting worse. She cannot walk, she now uses a wheel chair. She can't even get up without the help of two people just to get to the bathroom. The other night it took three of us to get her back into bed b/c she tried to go to the bathroom by herself and fell. She has this unquenchable thirst that the doctor said could be a side effect of medication (steroids to reduce brain swelling, dexotrin or something). She is drinking so much which is adding to her incontinence problem. She has many accidents throughout the day and night and has no strength to walk to the bathroom. We wheel her there but she usually doesn't make it.

Her lung doctor and brain doctor (mets to brain but were radiated recently) consulted together yesterday and said she is in a very advanced state and don't even think Navelbine would increase her life expectancy of 3-6 months. Her tumors are so large in both lungs. She needs to make a decision tomorrow because she is meeting with her doctor regarding trying the chemo (which they don't recommend, but my Mom wanted to know her options) or hospice. I think my Mom is moving towards hospice.

She is still very sharp and is with all of her kids and grandchildren right now. She hasn't left the house except to go to the doctors because it is so uncomfortable for her.

Thanks for your all of your information. I'm not sure what to do next, it is my Mom's decision. She wants to enjoy her days since she is pain free right now and doesn't want to feel sick if the chemo won't lengthen her time. My step-dad and sister who live with my Mom are extremely tired from getting up in the middle of the night many times to change sheets and shower my mom and do everything for her during the day. But they don't complain. I hope they can get some help since I live in NY.

Thanks again for your thoughts and prayers. I may be back to ask questions about hopsice, I don't really know anything about it.

Patti

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Patti,

I know exactly how you feel. My dad was told 4-6 months on the 11th because of brain mets. Since that daymy brother, 2 step brothers, stepmom, myself and other family members have been in and out trying to learn all we can as fast as possible. It is so hard to find all the right info. and to know where to go for help.

You are right that it is your moms decision, but with all her families help and support she will hopefully want to try to fight it. Over the last week I have thought a lot about all the what ifs. In some ways, I think for your mom and my dad it is easier to face what they are facing than what we are facing. They know that there would be peace in their passing on to a better place and they would be done with the day to day rat race that we all face. For all of us left behind there would be such a great big hole in our hearts. I know they are also very sad at what they want to experience yet in life. My dad told me that having us all around rooting for him and looking up info. has given him hope. This board here has really given me a lot of info and hope also. There are some amazing stories on here. see if you can share some of them with her.

I will be thinking of you and your mom and praying for everyone of us dealing with this horrible disease. A cure cannot be found soon enough.

Leah

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Patti,

You have heard alot of good advice and I agree that your mom should seek a second opinion. If she decides not to seek further treatment, you may want to call in hospice to help you and your family care for your mom. I've also heard some people have gotten their loved ones a "potty chair" that they put next to the bed and this has been very helpful.

I don't know how old your mom is, but I also have nsclc in both lungs, a malignant pleural effusion, and mets to the brain. The good news is that after radiation the brain mets have shrunk or are gone (I had 6), the pleural effusion has been drained and has not come back and the tumors in the lungs are remaining stable since May 2004. In April of this year I will be 2 years from diagnosis. I definately plan on seeing that anniversary!

I wish your mom and your family the best in this journey. Hoping they can find something that will work for her.

TAnn

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