Re: Brain Mets &%$#$!! :(
 

Denise, I was sick when I saw the post about Brain Mets with your name - out out damned spot(s), that's all I can pray for!

Please heed the advice from Steph and the other brain mets survivors, there are so many excellent treatments now.

Delaney I am thrilled that your scan came back clean.

Wishing much success to you both in your treatments.

all the best
caya

Re: Brain Mets &%$#$!! :(
 

Jeez, I go away for a few days and come home to find THIS! Stupid cancer.
But look at the outpouring of love and support you have received. If good wishes are medicine, you will be better in no time!
I know you will bring your spirit and positive outlook to this latest round. More than ever, keep the faith.

Re: Brain Mets &%$#$!! :(
 

Im so sorry, Denise. I remember the feeling when I found out my cancer spread into my liver, and I wasn't a stage II anymore. I cried for days and days...Im so sad that you have to go through this. I wish I had more adequate words...just sending lots of love and positive energy and prayers.

Re: Brain Mets &%$#$!! :(
 

Dear Denise, I am thinking of you and praying for you, another bump to get over but you will xx

Re: Brain Mets &%$#$!! :(
 

Denise - praying for you! Feel so helpless sometimes but have always felt that prayers work!

Re: Brain Mets &%$#$!! :(
 

Denise,
I am so sorry you are having to go through this, but go through it, you will! Just remember, don't stop!

Sending up lots of prayers.

Sandra

Re: Brain Mets &%$#$!! :(
 

Denise,
How are you today...we are thinking of you...
XOXO
Karen

Re: Brain Mets &%$#$!! :(
 

Yes, we are all thinking of you Denise
Dawn

Re: Brain Mets &%$#$!! :(
 

Am thinking of you. DAMN cancer! I am at a loss for any words that would make a difference, but please know we are all pulling for you and you are not alone.

Re: Brain Mets &%$#$!! :(
 

Dense, how are you feeling today? I'm guessing about the same....so am I ,still sad over your news. But remember when you are rested, have all your options, and make your choices, you have SO MANY OF US that make up the "fighting team" we will be right here full of support, positive words, endless prayers and will remain in place with you during the battle until the end, then we will all rejoice the victory with you! love you Denise

Re: Brain Mets &%$#$!! :(
 

Oh denise...i too am sad for you...i'm only 4 months into my cancer journey, so have nothing to add besides what others have said...one dear friend of mine told me when i was diagnosed that cursing was allowed, so heres a big #%^£*\}#%! from me.

Re: Brain Mets &%$#$!! :(
 

I am thinking of you too Denise. Sending you positive vibes and lifting you up in prayer.

Re: Brain Mets &%$#$!! :(
 

Denise:

I'm so sorry you are going thru this! It's ok to be sad; you did all you were supposed to, and then some and this enemy of ours does not fight fair. It's time to reload and fight. You can do it!

Re: Brain Mets &%$#$!! :(
 

Denise... I feel for you. I remember how I felt the moment I first found out.

Don't rush into WBR... with two lesions, it would be too soon. You can take Tykerb/Xeloda and be very closely monitored with MRIs, talk to your rads onc and your onc. If the Tykerb is not their preferred answer, then ask about the whack-a-mole method. It has done me well! (as well as Steph.) Tykerb was my first choice for almost 2 years, before we needed to do the whack-a-mole method when we saw them light up on scans. We did IMRT, with great results on all 6 of them, and stayed on Tykerb/Herceptin another 18 months. Gamma and Cyber are other decisions that have been chosen, too.

Just FYI, I am going on 6 years after brain mets and still doing really good. 7 years as stage IV. I hope this is helpful to you.

Let us know what you choose to do!

Re: Brain Mets &%$#$!! :(
 

Denise,
I will add you to my prayer list everyday. There are so many "warrior" women on this site...and you are one too. My thoughts and prayers are with you.

Re: Brain Mets &%$#$!! :(
 

Denise,
You are in my prayers.

Re: Brain Mets &%$#$!! :(
 

My friends,
I am totally blown away by the outporing of love and support from all my HER2 sisters! Thank you! Thank you! Thank you! Once again I have to say that I don't know how I would ever get through this nightmare without this community!

Here's an update...
Because of the size (3cm) and the location (very close to my brain stem) the wonderful Penn Medicine "machine", and my beloved oncologist, got me in to see the head of neurosurgery less than 12 hours after my MRI. And thank God for that, because he was so wonderful. In the time I spent with him, I went from very, very sad...to thinking...Okay, I can do this.

His plan is to do a Gamma knife procedure (he's done 1000s, literally...such a comfort that only one of us is new to this!) Possibly followed by stereotactic radiation to the 2 sites if needed.

No shaved head (silly to even think about that, I know, but my hair just this past week got long enough that I look like myself again), and

no damage that will change my personality (I realize that "pride goeth before the fall" and all that jazz...but I really like me, the way I am...I suspect much of my sadness stemmed from fear of not being the same wife and mom my family needs and loves...and of course...of leaving them much too soon)

And, much less important but still of concern... I was very worried that I wouldn't be able to return to work...and would then lose the insurance that pays for this joy ride of mine!

He assured me that, barring anything tragic, and unforeseen (in which case I'll be in a deep, and permanent coma, and really won't be in any shape to worry), I should be back in my classroom in September. He said that I'll probably still be suffering from post surgical fatigue...but I'll be there...doing my best, until the fatigue fades.

After the procedure, the plan is to do an MRI every 3 months and zap anything new that has the nerve to pop up. I'm also scheduled for a bone scan, a dexa scan, and a full body CT in the next week, to make sure it's only in my brain. (listen to me! ONLY! talk about a paradigm shift!)

And Steph, you were right, they did the clinical neuro eval... twice...touch your nose, walk a straight line, remember these 3 words, follow my finger with your eyes...etc And they agreed, I have absolutely no symptoms. Even the migraines that made me ask for the MRI seem to be just migraines...completely unrelated.

And for those of you who were sharp enough to sniff out the cerebellum/balance connection...and my fall/freak accident. No way, sorry. I saw the insurance video. I was in perfect form, balanced, graceful...then the gunk on the floor, combined with the laws of physics just tossed me around like a rag doll.

So, I guess the lesson to be learned is...every single one of us should INSIST on a brain MRI before we think we're NED and try to go on with our lives. If I had waited for symptoms, it might very well have been too late to do anything about it, without damaging my brain very, very badly. Herceptin, and even the harsh chemos like Taxol and Adriamycin don't cross the blood/brain barrier. The surgeon said the brain is a "pharmacoligical sanctuary"...basically, we chase the cells out of the rest of our bodies, then hope they don't head off to cause trouble in our brains. Our brains seem to be like Aruba for HER2 cancer cells...the climate there is perfect every day of the year! Cases like mine are not nearly as unusual as I always thought.

Please friends...learn from my situation...if you have to fake symptoms to get somebody to order a brain MRI...DO IT! Migraines, and blurry vision will do nicely, I believe. I'm even authorized to offer general absolution to those of you who feel lying about such things is wrong.

I should have a more definite timeline for how all of this will unfold by the end of the week. And it seems like the actual gamma knife will be next week. So I'll keep you posted. All the prayers, hugs, positive energy and notes of support are very much appreciated. You are so wonderful to me....and are giving me exactly what I need...to stay strong, and keep fighting. Attitude is so important!

Hugs to all of you!
Denise- who is ready to get back in the fight!

PS-Those of you who PMed me......please be patient with me...as I try to get caught up with my replies.

Re: Brain Mets &%$#$!! :(
 

Those mets don't know who they are messing with!

Re: Brain Mets &%$#$!! :(
 

denise
i log in often but don't post much...but i feel like i know the "regulars" on this board from reading hours and hours of posts and threads
i have read so many of your replys and posts, especially to newcomers, your warmth practically jumps off the pages

when i opened this thread today my heart just sank, stupid f'in disease. Sorry, not very lady-like but i just needed to get that out.

i am glad to read your last post, it sounds like you have a plan of attack that you are comfortable with

i also believe in the power of prayer and will be adding you to my "list"

Re: Brain Mets &%$#$!! :(
 

Denise - I m so pleased to read your update with a plan. Will you be doing any tykerb?
I have never had an MRI - mainly because I have a magnet in the skin expander in my breast and can't. Do PET's pick up areas of concern in the brain?
You have been so much in my thoughts and I know you can do this.
Much love to you.
Amanda xx