stage 1V w/brain met

[jenn3]

I'm not sure where to start. I have been pretty much a lurker on this site since my 44 year old sister was diagnosed March 26th, 06. It was the worst day of my life. I got a phone call that my sister had a seizure (which she never had one in her life) and was in the hospital. I rushed over there and they did a cat scan and we were laughing while waiting for the results. Never in a million years did we think the emergency rm dr. would come in and tell us "i'm very sorry, but you have a large mass in your brain!!!!". We froze in shock and my sister, my husband and myself were all speechless. Then the dr went on to say that it probably came from either breast cancer or lung cancer and he said do you smoke and she said yes and they did a chest x-ray which confirmed lung cancer. Everything after that was basically a blurr of tests, drs, etc..., which she was then diagnosed with stage 1v lung cancer and a 3-4 cm brain tumor. We had her transferred to sloan kettering in manhattan here she underwent brain surgery and they thought they got most to all of the tumor and she was going to receive stero-tactic radiation as a follow-up, and within a week after the surgery the tumor was growing and she was no longer a candidate for the stereo-tactic (sp?) and would need whole brain radiation. At this point her symptoms were getting worse. She was having alot of weakness on her right side and a hard time getting her words out. After her last radiation she seemed a little better and they thought she may qualify for the stereo-tactic radiation, but within a week after they thought that she was getting worse again and they said that if the tumor was growing again she would not be able to get it. Needless to say, she started having more seizures and symptoms getting much worse (hardly able to walk or use right arm), had another mri - tumor growing, excessive swelling (and already on 24 mg of decatron), dr. said that the tumor is so agressive and chemo will not help, that it is time to call in hospice. She then had another seizure, we had another mri and another opinion from another dr. and they are saying the same thing. So now she is at home with hospice and getting worse everyday. She cannot walk, feed herself, speak and they say approximately 2 months left to live. This has been the most horrific experience that my family is going through. How someone can be fine one day and this happen the next day.

Just needed to vent - thanks for listening.

[MsC1210]

Hello Jenn and welcome

I am so very sorry to hear about your sister. I am very glad you have found this site and posted. There are so many wonderful people on here that will be along to offer advice and input.

We are here for you anytime. Lean on us as you need to.

Sending you prayers for strength,

Chris

[Don Wood]

I am so sorry -- very sad scenario. Unfortunately, a lot of cancers are like that -- growing fast without symptoms until it is too late to do something effective. Glad you vented. You need all the support you can get to move you through this. Don

[EastCoastLadi]

Jenn,

I can't imagine what you and your sister and family are going through. She is so young, so she is not having any thing done at this point? Do you know why she is not a candidate for whole brain radiation? If it helped a little before, why can't they, if it would help just a bit? Also have you asked the drs. about any possible clinical trials? I am so very sorry, I just can't believe that this is it for your sister based on what you told us. I hope that at least she is comfortable, please know I am praying for her and your family.

...don't hesitate to come here, please!

Grace

[marym]

I'm so sorry to you needed to find this site. It sounds as iff the tumors are too aggressive to treat. I would ask about whole brain radiation to see if that is an option.

My prayers are with you.

Mary

[RandyW]

Alright Jenn Welcome to the Group first off. I know how hard this is. Never let a Dr tell you how long someone has to live. Most patients here have heard that a number of times before and are still here.

Is your Onc willing to try anything to fight this disease no matter what? They should be willing to fight this disease.

Asak about Clinical Trials.

Stage IV With Brain Mets currently recruiting Patients. Click on the Link to be redirected to the source;

http://clinicaltrials.gov/ct/action/ChangeQuery

I am a believer in advocacy and fighting this disease tooth and Nail as you can see. My 49 YO wife of 9 years fought bravely for almost 3 years before losing her battle. She was 5 hours away from a new fround of treatments that I feel would have given her more time with me. She was fine 1 minute and gone 5 Minutes later. If you need to vent, Rant talk, complain or need any help with anyhting let us know we are always here basically.

[Fall54]

Dear Jenn,

My heart breaks for you and you're family!! It is so very hard to watch a loved one suffer. I lost my Brother to stage 4 lc at the age of 46. I do know how hard it is for you. Please keep coming here and venting, talking what ever you need to do. We are here to support one another. I feel you're frustration and pain.

I am praying for you all

God Bless,

Jane

[lilyjohn]

I wish there was more that I could do or say. I'm sorry seems like so little but that is all I can say. Welcome here you will find support and a lot of love here.

Lillian

[ginnyde]

Jenn, this is heartbreaking, I am so sorry. My husband also started with a seizure from a brain met. Surgery and whole brain radiation helped him survive for almost 23 months. I hope your sister gets the same chance.

[hollyanne]

Jenn -

I am so very sorry. Please try and focus on each day. It sounds so trite, but if you get through today you will deal with tomorrow when it comes. It so very overwhelming to think about the "what ifs" of the future.

Prayers for your family that you have peace of mind and strength in the coming weeks and months.

Holly

[kamataca]

What a nightmare for your sister and your whole family. I am so sorry that you are all going through this right now.

Please don't give up. Make each and every moment count. Your sister is lucky to have you there for support. I will keep you both in my prayers. Please keep us posted!

Kelly

[angelofcharlie20]

Hi Jenn,

Situtions like yours just break my heart. I am so sorry for what you and your family are going through. Please feel free to vent anytime you want -there are always welcoming shoulders here for you to lean on.

Prayers and thoughts for you and your family.

Shirley

[jenn3]

I just want to thank everyone who replied to my post. I honestly had tears in my eyes reading all your replies. I could not believe how many of you replied and how quickly. You all seem to be such a great bunch of people here. Thank you again for listening. You all have been through some very tough times yourselves.

Grace,

My sister did have whole brain radiation and unfortunately it didn't seem to do much.

Jennifer

[EastCoastLadi]

Jennifer,

I know it just isn't fair. I hope at least she is comfortable. That is the most important thing right now for her. I can understand completely how something like cancer can take so much from a person so quickly. My dad died almost a year ago from bladder cancer, much too quick, around memorial day and within 3 mos. and he was gone, I look at pictures of him at my godsons' 1st birthday in feb 05 and he looked so healthy. It is such a heartbreaking thing to go through. I'm praying for your sister to be comfortable and pain free. Please don't hesitate to come here, or pm me.

Grace

[mamasbabygirl]

Jenn,

I sent you a PM. Please check your messages.

[jenn3]

Randy

Thanks for the link to the clinical trail website. What a great website. I think it is to late for anything unfortunately. I got a call from my sister's boyfriend this morning, she is not doing well these past two days; sleeping most of the time, not talking. It is not looking good. I am supposed to go visit next week.

jenn

[trish2418]

Jenn,

I am so sorry for all that your sister and your whole family are going through. Its beyond my imagination. You have our support and prayers.

Trish

[Jyoung20]

Jenn,

So sorry all of you are having to go through this!!! Never give up! We are here for you and your sister.

GOD BLESS!

Jamie

[jenn3]

Just again want to say thanks to all of you who replied to me. What a great support group here. It is great to see that some of you are doing so well and treatments are working!! It gives everyone hope knowing that sometimes this dreadful disease can be beat!!!

Jennifer