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-   -   Brain Mets &%$#$!! :( (https://her2support.org/vbulletin/showthread.php?t=55267)

dawny 07-26-2012 04:40 AM

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

ammebarb 07-26-2012 07:39 AM

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.

LoisLane 07-26-2012 08:36 AM

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

Becky 07-26-2012 09:29 AM

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.

caya 07-26-2012 11:30 AM

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

chekmark 07-26-2012 12:09 PM

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.

KDR 07-26-2012 12:57 PM

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

tricia keegan 07-26-2012 02:20 PM

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!!

sassy 07-26-2012 04:04 PM

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!

'lizbeth 07-26-2012 05:33 PM

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.

chrisy 07-26-2012 08:04 PM

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

Joan M 07-27-2012 04:08 AM

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

Ceesun 07-27-2012 09:32 AM

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

Rolepaul 07-27-2012 10:49 AM

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.

Deb33 07-27-2012 11:27 AM

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.

NEDenise 07-27-2012 11:42 AM

Re: Brain Mets &%$#$!! :(
 
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

hutchibk 07-27-2012 07:44 PM

Re: Brain Mets &%$#$!! :(
 
(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.)

NanaJoni 07-27-2012 08:14 PM

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.)

Bunty 07-29-2012 04:57 AM

Re: Brain Mets &%$#$!! :(
 
Denise - you go girl!!! Your spirit and determination is wonderful. I'm keeping you in my prayers as well....
Love Marie xx

lkc Gumby 07-29-2012 11:20 AM

Re: Brain Mets &%$#$!! :(
 
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


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