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

Re: Brain Mets &%$#$!! :(
 

Thanks for updating us Denise, we are all thinking of you. I am so glad you were able to get in so fast, and the action will start next week. You go girl, get rid of those little buggers!
Dawn

Re: Brain Mets &%$#$!! :(
 

Good morning, Denise. It was good to log on and find your post today. Sounds like your team is wonderful and having a plan is exactly what was needed to put the "spark" back in. Sending all good wishes for a wildly successful gamma knife procedure. Many prayers, mine and all those offered by your HER2 sisters, are with you. Wrap yourself in all that love and get ready to zap those errant cells!

Barb A.

Re: Brain Mets &%$#$!! :(
 

Hi Denise what a great post to see from you. So glad the plan is in place and your strength, determination, braveness and humour are intact. Thanks for the advice about brain mri post treatment. I am now almost four years out from diagnosis and see my oncologist once a year now. I had asked him on last visit would it be necessary to scan the brain because I know the meds do not cross the brain barrier. He said no because it there was anything going on there would be symptoms early on. I guess that did not happen in your case obviously. In Canada we have wonderful cancer care but I know most oncologists here dont believe in scanning unless there is a reason. If any other girls from Ontario have any experience otherwise let me know. Denise I have been thinking of you daily and sending up prayers. I know you are going to do well. Lois

Re: Brain Mets &%$#$!! :(
 

Denise

I'm glad that everything is at least under control. Temodal, Xeloda and Tykerb do cross the blood brain barrier and may be an option following the gamma to knock off any cells that are just waiting to become something. Just a thought to discuss with your medical team.

Re: Brain Mets &%$#$!! :(
 

Denise,

I was so happy to see your update - like I said - out out damned spots!! Glad everything will be taken care of quickly. Just don't rush your recovery, you will need to rest, sweetie.

all the best
caya

Re: Brain Mets &%$#$!! :(
 

Denise,
You sounded like your old self again. Deep breaths, alot of tears and now a plan of attack. You can do this. We all love you.

Re: Brain Mets &%$#$!! :(
 

Denise,
Just like you to get it together and go shoulder-to-shoulder with the adversary...that's what I like to see: you.
Always here if the need arises,
Karen

Re: Brain Mets &%$#$!! :(
 

I was so glad to see your update Denise and to know you're back i fighting form and can begin doing that next week and I'll be keeping you in my thoughts and prayers, you go girl!!

Re: Brain Mets &%$#$!! :(
 

Hey Denise,

Been off the boards and missed your first post til today, but glad do see the "fighting you" in your second post.

I hate that you are having to deal with this--but I know you will DEAL with it!

Keep you in my thoughts and prayers--remember we all have your back!

Re: Brain Mets &%$#$!! :(
 

Denise,

I've been watching for your posts with news. I am so happy for you that you are receiving excellent care, and that you don't have to go through WBR. It sounds like a solid plan and I hope you land back in NEDland soon.

Re: Brain Mets &%$#$!! :(
 

Without reading anyone's response, my first reaction was F}%^ NO!!!!


Tha t said, and felt with you, I am sure you have received much encouragement from others already, and I will go back and read these wise words.

But now I have read your update, and know you are in good hands. Sounds like you are in a very "treatable" place, and I know that not only CAN you do this, but you WILL.

And without losing that wonderful spirit and sense of humor.

All my love,
Chris

Re: Brain Mets &%$#$!! :(
 

Denise,

I understand your exact thoughts. I too received that terrible news. But you have everything under control and are in good hands. All will be well.

You're right about catching the brain mets early. I didn't have any symptoms either. After the cancer spread to my lung, my oncologist agreed to an annual brain MRI, and the second scan, which was actually 16 months after the first, showed a 2.6 cm tumor in the left frontal lobe. I haven't had anything since then.

Sending you a lot of hugs and prayers.

Joan

Re: Brain Mets &%$#$!! :(
 

Denise, You have a plan of action ready and that is the best news--so go with that! Joan, Steph, and Brenda are in the know on this issue and that is so helpful --of that I am sure. You are loved on this board...count me in..I will be praying for you. Ceesun

Re: Brain Mets &%$#$!! :(
 

Great plan of action. Exactly what we did with Nina. I PM'd you as well.

30% of HER+ patients end up with Brain/spine involvement if there are mets according to a few studies (Dr. Eric Weiner at Dana Farber being one author). I am getting pushback for Brain and Spine MRI industry wide at 2, 4, and 6 years post surgery if more than 2 nodes positive. The doctor here refused to run them and we nearly lost Nina because of that. His cohort ran them at my request (okay request might be the understatement of all times, "I think it was the I will personally sue you and make your life a living nightmare if you do not run one" was the phrasing) and it was still much larger than yours.

If you need someone to bounce ideas off of, I am the person. Nina started OR nursing orientation on 02/04/10 after surgery to remove the lesion on 11/19/09 and Gamma knife 10 days later. I think three weeks is tight after Gamma Knife, but not out of line.

Whack mole worked for two years. Do not break the chemo or the moles start to reproduce. If you get Xeloda, start the Monique Spencer regimen when you pick up the scrip. I have four Henna bags if you want them. Do Vitamin K cream on your hands and feet before you go to teach in the morning and again at noon.

We have been through this bunch of brambles. Let Nina and I show you the way. We even found out how to put the darn things to sleep without whack a mole. And I think there is a doctor at Pitt that wants to be part of a trial.

Never give up "The Untouchables". I hate to lose "Star Trek II: Wrath of Khan. You have a lot more students to teach and kids to watch grow. Besides, you need to learn how to bowl on oily lanes.

Re: Brain Mets &%$#$!! :(
 

I am joining in late - thankfully - it would have been devestating to see "brain mets" next to your name without a plan of action. You will find the strength to get thru the next phase - I do wish you could get this behind you quickly and move on.
You, along with everyone else, are in my prayers.

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Paul, fellow Trekkie...
1. I also hate to lose!
2. I never give up.
3. There is absolutely no chance I will ever bowl again in my long, long, long life. Not "giving up" exactly...I never loved bowling anyway...and I'm just choosing my battles. :)
~ replied to your PM.

All my Sisters and Friends,
Thank You, Thank You! for your messages. It's HUGE to be reminded that I'm not alone, you're praying for, loving and supporting me! And of course, it's just as important to have ladies ahead of me who have fought this battle and won! Your example is what I needed, so I didn't go to that dark place where hope can't find me.

Love and hugs!
Denise

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(if you end up being radiated twice in any given exact area over time (2 years for me), don't be surprised if radiation necrosis grows, not tumor. At least it is necrosis, thank goodness, but just so that you are in the know... so that the docs are also in the know. If you need me, I have experience.)

Re: Brain Mets &%$#$!! :(
 

Denise - I am one of those who is so shocked and saddened by your earlier post about this news. As I read all the posts I am not surprised at all by the passion you inspire. You have inspired and cared for so many of us and it's just a helpless feeling not to be able to come over to your house and do something - anything. I've told my husband about "this amazing woman named Denise" - and you are in our prayers daily. (I had an image of you smashing cancer cells with a bowling ball.)

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Denise - you go girl!!! Your spirit and determination is wonderful. I'm keeping you in my prayers as well....
Love Marie xx

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HI DENISE, i HAVE BEEN AWAY, AND MISSED ALL OF WHAT'S HAPPENING. I know you can beat this. You have a great plan of Tx and phenomenal Kick BC a** attitude.
!! God Bless