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I've got brain mets - HELP!!!!


Leslie221

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Yes, it's true. After a week of progressing symptoms (slight dizzyness, lots of typos here, slurred words, and bad hand writing) I decided this morning at work I'd better get an MRI to rule out my worst fear. Spent the whole day in the hospital and it turns out I have at lest 8 mets that have been probably growing for a few months. The largest is behind my right ear and it's 2.5 cm.

They started me on Decadron (Oh, how many times I've heard so many of you complain about the side effects. :cry: ) and I start WBR on Thursday.

Mark left for California yesterday morning on business; friends have had to drive me and there's a snow storm! Jeesh! Last week or next week would have been a whole lot easier. But, you all know how THAT goes?! 8) Mark is flying home tomorrow. He's in tears on the cell phone, freaked out, driving through LA traffic. Luckily, he will spend the night at his mom's home. I feel so worried about him being so worried - you know? And it's hard to be without hime right now. :roll:

So, I have wonderful, caring friends and that has made all day do-able. And I have all of you for support, hugs, pats on the back, tear wiping, and experience. I am in shock because the Tarceva has shrunk the lung stuff so much. The onc was nearly in tears (I talked to him on the phone). My lymph nodes are ok, my liver is fine. But these darn brain mets have been in me even while we were in Rome!

Here are my fears:

1) I will die very soon

2) The treatments will be really hard to endure after having a year of basically nothing to endure

3) The WBR will ruin my brain, ability to talk, think, walk, be me

I know many of you can help me get a grip on this and keep my fears from sky-rocketing out of control. I need to hear that I willl be able to fight this and I'm not going away next week.

I'm trying not cry. It's just such a fresh shock still and I really didn't expect this - AT ALL!!! :roll: So, calling for your support now!

Leslie

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Thanks Pat and Brian! See, I knew you'd be here right away! I went over to the Chat room for awhile and talked a little about it. I'll feel better (emotionally) when I know more about WBR, etc. I hate being kind of in the dark with the shock. Lots of friends here and survived brain mets, so I'm going to be optimistic. It's just the newness and the vagueness of the future, you know? And I need my husband here to hug and cry with. That's probably the hardest part!

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Oh Leslie... Woman... This news sucks!!!

Like Pat said--Here we are. We're gonna cry with you for now, and let you soak our shoulders all you need. And then when you're ready, we're gonna help you put on your boxing gloves (as well as our own) and you're going to kick those brain mets into oblivion. This IS only a temporary trip away from the 'empty-headed club.' You're needed there. Who will show the slides from Rome at the meetings?

(((((Leslie)))))

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Were here to get you thru until Hubby comes home. Let me know if you want my help. I can research for you, send you some links, a person to talk to, whatever- you know I'm here.

(((HUgs))

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You will not die next week. Take a deep breath, ask the radiation onc lots of hard questions, then decide. Many members have dealt with mets and can help you. I am so sorry you had to do this without Mark. We're all here for you Leslie..

Rochelle

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Leslie, remember we're all here for you. I know this is tough news to hear with Mark being away. You're a real fighter and I just know that you're going to be fine. I don't have any first hand experience with WBR but I do have broad shoulders and am good at listening. I'm also getting very good at saying lots of prayers. You and Mark will certainly remain on my list! Just remember that we're all cheering you on!

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Right there with you girl!!!!

Got any of those Ativans hanging around? They would work for a few days.

With 3 cancer dx'x, the easiest to take (initially) was the lung cancer "cause I was high on morphine at the time! :wink:

Seriously, I do believe in better living through chemistry. When you need it.

Also, have you read Bernie Siegel? He has wonderful books, and I got many of them on tape from the library. I went into my lung surgery with my headphones on.

One day at a time, or one hour if that seems too long.

gail

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Are your shoulders damp yet? I've been reading about WBR and now I feel WORSE! :roll::shock::roll: I've got to talk to my onc tomorrow and talk about CyberKnife. I'll only accept WBR as a last resort. I need to take a deep breath and talk this over before I rush into something that may have so many harmful effects. So maybe won't start WBR Thursday! 8)

I still have one pill left to help me sleep, and I think I'll take that tonight. Is it okay to mix that with Decadron? I never asked. I think I can do without it tonight. Will not read any more about any of it tonight or I'll just get myself all worked up.

I knew sooner or later I was gonna need all of you! I am so relieved to know you are all there and I don't need to be alone, or talked into anything by docotrs because you will help me stop and think before acting! Thank you all!

Pray for Mark, too -- Nov. 22 would have been his sister's 40th birthday; shed died of a sarcoma in June. I know his pain and fear are still very fresh and now he is scared about this. I've told him it's all gonna be fine, not as bad as it sounds, etc. I kind of believe that myself, but I can see I've got to study all my options and ask lots of questions before I rush headlong into any treatment. Okay, deep breath, exhale. Thank goodness I have a house full of warm furry loved ones to pack around me in bed tonight!

Leslie

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My heart is just breaking for you at the thought of you being home alone tonight of all nights.

I wish I had some words of wisdom or comfort for you, Leslie, know that I am praying hard for you and Mark both.

I can tell you are in shock, I hope that medication kicks in and you and your fur babies get some needed rest.

I'm glad to hear you are going to do some research before you make decisions.

Kathy

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((((((((((((LESLIE))))))))))))

I honestly don't know what to say. I am just as shocked as you are. :shock::(:(:(:(

Leslie, Please know if you need an ear, or want to scream or cry or what ever it takes to get through a minute or a day, I would be more then happy to lend you my ears shoulders arms, whatever it takes my friend. I'm here for you. (((LESLIE))))

Love & Hugs,

Connie

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I am so very sorry to hear that news. Brain mets are my worst fear. I found this info on another web site. I hope it helps.

"The Leksell Gamma Knife looks like a new weapon to use against brain mets. Take a look. It is not everywhere, but it certainly looks like a winner."

http://www.roswellpark.org/document_119_620.html

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You're a tough girl. Your posts indicate that. You also have a survivor's mentality. You're in shock now. Step back, relax and see what the doctor has in mind for you. There are many good ways to deal with this and many, many people here have gone thru this with good results. Hugs(((( )))) and all my support goes out to you tonight. You're a great person.

Joanie

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Leslie, many prayers coming your way. You are such a fiesty fighter, you can fight this too. I didn't have any problems with Decadron, actually thrived on it, so don't be too worried about that. Please try to stay calm, gosh I wish your hubby was home, that's got to be hard on both of you. Just know that you are being hugged and loved right here from all of us.

Prayers and hugs,

Nancy B

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Leslie,

You are in my prayers girl. Whatever you decide about the mets (gamma knife, WBR etc) it will be the right decision for you. I know your fear. I am so sorry that this all happened, much less with Mark away. Hug those fur people tonight and think about all of us hugging you as well.

Nina

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Leslie,

No experience with brain mets here, but as you know many here have. From what I see many of them have done very well with their treatments . I saw this post earlier and didn't know what to say. I think each and every one of us can relate to the feeling we get when there are new mets, progression, increase in size of tumors etc. At first , it is really hard. Once we accept it and get a plan as to how to deal with it, we are better able to move on. You have my prayers , Leslie. Keep in touch with us and never underestimate how much you are cared for here. You aren't alone.

Love and Prayers,

Sue

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I JUST WANT YOU TO KNOW THAT I WILL BE PRAYING EXTRA HARD FOR YOU... AND PLEASE KEEP A POSITIVE ATTITUDE, I HAVE TALKED TO A COUPLE OF PEOPLE THAT HAD BRAIN METS AND ARE DOING WELL NOW, SO PLEASE BE READY TO FIGHT THIS AND DON'T LET THE "NEW FINDING" GET YOU DOWN!

OUR BROTHER HAS BRAIN METS (OVER 15) AND HE IS STILL HERE WITH US, (HE IS TAKING DECADRON, DILANTIN AND FOUND OUT THIS MORNING THAT THEY WILL CONTINUE GIVING HIM TARCEVA, (BECAUSE HE IS DOING WELL WHILE HE'S BEEN ON IT)... WE HAVE SO MANY PEOPLE PRAYING FOR HIM AND I KNOW THAT GOD ANSWERS PRAYERS!... AND NOW I WILL BE PRAYING SO MUCH FOR YOU TOO!

GOD BLESS YOU!

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Oh Leslie, I'm so sorry to read this news - I think brain mets are the scariest ones. We were terrified when Mum's were found. She had about 8 mets as well. SRS was never an option for her as it is not done routinely in Australia but she did handle the WBR better than I expected, and her tumours responded quite well to the treatment.

I'm sure you have been reading the posts about the nasty side-effects of WBR, but do remember that the delayed effects that are talked about tend to be more pronounced in elderly patients.

Holding your hand across the miles......

Love Karen

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