Brain Mets &%$#$!! :(

[NEDenise]

Friends,
Today, I went for what was supposed to be my "end of treatment" baseline brain MRI.

Before I even got home from the hospital, my oncologist called me to say, "Denise, the radiologist just called to tell me they found two lesions in your brain."

That was six hours ago. Since then, I've cried, searched the internet to find information about the treatments I thought I should know about. And now...I'm just sad. Deeply sad. I wish I were scared, or angry. Those I get, but sad is not something I do well.

That's why I'm turning to you. No one else in my world can understand how I feel in quite the same way as you do.

I'm so disappointed. I did everything they told me to do. I was brave. Hell! I was even cheerful. And now this.

In a few days, I'll have seen the neurosurgeon, and the radiation oncologist. Then I'll have a plan, and a better idea of what I'm up against. And then I can try to explain to my beautiful sons why we'll all have to head back into the fires of cancer hell again. (I only finished my last Herceptin two weeks ago for cryin out loud!)

Funny how two weeks ago, I thought a shattered wrist was a big deal. Just goes to show...things can always get worse.

Thanks for letting me share. Sorry to be such a downer. I promise...I'll be my old self in a week or so...but right now...I'm just sad.

Denise

[StephN]

Dear Denise -

Very soon you will know the exact particulars of your two brain lesions. Look at my case. I had two lesions - one was even 3 cm!

You have a very good chance of beating this. Also, please remember that Herceptin - as great as it is - is too large a molecule to pass through your blood brain barrier.

I found my brain mets treatment to be the easiest of all, since it was not something systemic that affected so many of my cells like chemo. You may have Novalis, an improved machine over Gamma Knife. However Gamma Knife or Cyberknife can still be completely effective as it has been for me and so many others against our brain mets.

You might like to know that I had a brain MRI just 10 days ago and it was neg for anything new. That gives me almost 7 years since I had active brain mets.

I wish the same great result for you as well. Be brave in spite of this punch in your gut. You will do well.

[JennyB]

Oh Denise I am so sorry about this and deeply pissed off on your behalf. I don't really have any advice but other more knowledgaeable souls do and will reply.

You are on my prayer list and I hope the pesky little cells get blasted back to kingdom come

Lots of love

Jenny xxx

[dawny]

Denise, that really sucks. It is ok to feel sad, it is a big shock for you. I know that shortly you will feel ready to fight, you are a strong woman (and a very funny one too, thank you!) I wish you all the best, and hope you will post again soon to let us know how you are doing.
Dawn. Hugs

[michka]

Dear Denise, I am so sad to read your post and I understand how you feel. I just hate this sickness. I am happy Steph posted. As soon as you will have your plan you will be able to concentrate on blasting those two stupid mets. Stay strong. I am sending hugs. Michka

[Pamelamary]

Dear Denise,
We are all sad for you too! It's amazing how the ties grow in this cyber community. I wish you strength and success in the treatment to come.
Best wishes..... Pam

[Pray]

Oh Sweet Denise, I am so so sorry! This is so hard to believe. I don't know anyone more positive than you are! I too am so glad Steph posted her hope filled journey! Please take stock in it. You have seen this happen here over and over again and look how well more than the majority are doing! You have gained such strength with all of their journeys. Hold tight to your hope filled journey to come. Your wonderful husband who has been there for you every step of the way is still right with you along with your beautiful boys who have seen your strength and courage through this whole ordeal and have become stronger for it.

Trust in the Lord he is always with you. You know all your sisters here will be here twentyfour seven. Please come here often and let us help you through this step as you have always been there for us! Gods blessings to you and your family. Please know that you are in my prayers always!!! Your friend, Nancy

[Bunty]

Dearest Denise! Damn fr**kng disease. I'm angry - really angry, but calming myself down I know you will approach this next hurdle with the grace, courage and positive outlook (and humour), that you bring to life - we are blessed that you are here, although with news like this I wish you weren't here on this forum (if you know what I mean). Thank goodness you are on top of this so quickly - that is a huge positive. And Steph's words are indeed wise words. Sending you a huge hug my friend...... xx

[Mandamoo]

Oh Denise - I know that sad feeling. Great advice from Steph. Sending you big hugs. xxx

[LeahM]

Oh Denise,
I just don't know what to say. I am so sad for you. You were the first "friend" I made on this board and have really helped me as I started this journey into cancerland. I am only an hour away from you....I will do anything I can for you. Keep strong, stay funny and listen to Sheila. I know you can do this.
((((hugs)))))
Leah

[Ellie F]

Dear Denise
Read your post first thing this morning. Felt so very sad and upset about your news.I was glad that you posted here and I know you will get responses from others who have great experience. As I thought about you I also thought about those on here that have done very well with brain mets , Steph, Brenda,Jessica, Joan M. I'm sure they will respond with good suggestions about a way forward.Someone once said to me 'let the first shock pass' then collect your thoughts. I know it's very hard but try to hang in there till you know what you're dealing with.
Lots of hugs coming your way.
Ellie

[Redwolf8812]

I'm sad with you, Denise, but looking forward to your good news, which WILL be soon. You're in a great place (UPenn, correct?) and loads of prayers are going up for you.

Love,
Penny

[Delaney]

Denise, sorry you have these awful brain mets. I have had wbr and stereotactic radiation , and I get the results of a brain mri later today. I 'feel' something in my head so I am expecting bad news. Just hope they still want to treat them, I have a lot going on elsewhere too.
I wish you well as you go thru treatment. I wish both of us could be as lucky as Stephn. x

[chekmark]

Denise,
It saddens me to read your post. I am at a loss for words. You said it best, we do all that we can possibly do and it isn't always enough. You are not alone in this, you have all of us here right by your side cheering you on. You know that I have always been cheering for you and I will never stop. You (we) can do this,. Your are the little red engine, I think I can, I think I can, I know you can! You are in my prayers. You are allowed to be sad. You are allowed to be weak but we all know how strong you are. Please keep us informed. This is just a small hurdle. Take care my dear friend. In my prayers. God Bless. Darlene

[sarah]

Damn Denise, so sorry to hear this but Stephanie has great advice and experience and having seen her in the flesh not so long ago I can tell you she looks and seems great and so will you. It takes some time to get over a shock of hearing this but you will and you'll get back into the fight and beat it yet again.
hugs and love
sarah

[Barbara H.]

Hi Denise,
I am sorry to hear this news. It has been eight years since I recurred with a brain met. I am currently NED.
Kind regards,
Barbara H.

[jra40]

Damn, what terrible news Denise! I am so sorry to read your post but I know that you will beat these brain mets!! You, me, and everyone on this board are Warriors after the battles we have faced. Now my fellow warrior, go pick up your sword and kick the crap out of those brain mets!

Love and prayers,

Jessica

[norkdo]

Denise...the first friend I made on this board...the little red fire engine that could....I am very very shocked. I am with you on this journey. I was diagnosed only a couple of months behind you. Our cancers are similar in every way. I know that whatever treatments you get will be the top treatments available and you will live many many years to give advice and help others as you have been doing so all along.

In my mind this will be happening to me too, no doubt, so please stay strong to be my inspiration and hope as you have been all along.

I am so very very sad for you. But so encouraged by all the women on here who have prevailed for years and years beyond brain mets.

Love and prayers,
Nora

[norkdo]

did u have headaches?

[snolan]

Denise,
Very sad to hear your news, but as we all know that there is an emotional rollercoaster we all ride. We are all hear for that ride with you. I know you will beat this with the fire that you had before. We never know how strong we are until we are faced with something that makes us strong. Hang in there our prayers are with you.
Suzanne

[LoisLane]

Dear Denise just opened the computer and thought I wasn't seeing correctly at first when I saw your name and brain mets. I am so sorry this has happened but as you can see from posts from the other women here this can be zapped to oblivion and you will be NED once again. Denise I wish we all could be there to comfort you right now and put our arms around you but I am sending my prayers to you for a resolution of this and strength to keep strong and fight. Lois

[yanyan]

Dear Denise, I am so sorry to hear about your setback ! I know exactly how you feel as i went through this 4 months ago. I was ready to move on, get my reconstructions done and that was one month after my last herceptin. It took me a few weeks to get over this. But once you are in treatment, you will feel more secured and hopeful. Many others here have been through the same thing. I hope your road to recovery is a smooth ride. Love and hugs ((())).

[Kellennea]

Denise, I am so sorry for this news. I will send prayers up, and a hug to you.

[Vicky]

Denise, I was so sorry to hear your news. I had Novalis stereotactic radio surgery to one met on my brain in March. I just had my post treatment scan on the 11th of July and the tumor is shrinking and no new lesions appeared.

I say feel the sadness and grieve, and then let yourself renew with hope and keep the faith!!

[KristinSchwick]

Oh Denise,
I'm so pissed that that monster decided to return. I love Steph's post as it all gives us hope. Praying for you and your doctors.
Kristin

[StephN]

Dear Denise -
I know you are busy today making appointments to consult with some very smart people on this latest cancer go round.

Hope you got some sleep and are able to nap today to de-stress. Lots of hugs from here coming your way.

Was curious if these mets could have anything to do with your fall on your wrist. Also if you possibly experienced anything that could now be seen as symptoms.

You may get an evaluation called Karnovsky where they go over your balance and other faculties. I am sure you would have a high score.

Hopefully they will not need to put you on the dreaded decadron right now. I had to start it right away due to inflammation encroaching on my left brain ventricle.

Put on one of your funny tee shirts and let this first wave wash over you.

[Jackie07]

So sorry to hear the new development...

The fall that injured your wrist could very well have something to do with the lesions in the brain...

Many on this board have had successfully treated their brain lesions. New equipment/technique/medicine can eradicate/keep it at bay those metastasis...

Be sure to boost your endorphine with positive thinking/exercise/meditation...

Sending you good vibes...

[Becky]

Dear Denise

I just had to post to send you all my very best wishes and to know that I am here rooting for you and giving you all my support.

[Sheila]

Denise
So mad to log on and read your post....but i can feel your strength and perseverence, and know you will pick yourself up and wage a successful battle in this new twist....remain positive, you are all here to support you...sending a big hug and lots of prayers,

[jml]

Oh Denise, I'm so sorry!
The disappointment alone is devastating, not to mention finding yourself in a tailspin again, not knowing what the next step might be.
So in these upcoming days of multiple (more) doctor's appointments, every bit of information will empower you. Once you have all the diagnostic info and you and your docs develop a plan of treatment, I know your resolve will return.
And we are all here to help ease your burdens, bolster your strength and courage, and anything else you need.
I have battled 2 bouts with brain mets. The first was a single 4mm lesion in the L frontal lobe that was treated with a single shot of of Novalis and have been NED there for 2 years since treatment. The second time I had 8 lesions, one major one in my brain stem, and was treated with 15 rounds of Whole Brain Rads. In the first Brain MRI 4wks post last WBR, the MRI came back completely CLEAN!
So, sweet Denise, Keep the Faith.
You can beat this disease back. We are here to help you~

Jessica
Dx-5/17/02 - 33 yo; Stage IV - L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.
1/18/2012- 8 new spots in 8 weeks since last Brain MRI
one 2cm spot in brain stem, one 2cm spot in R temporal lobe.
No symptoms, THANK GOD!
1/25/12 – Start WBR x 15 rounds
2/10/12 – Oral Cytoxan WORKING! Melted supraclav node & undetectable by US!
2/14/12 – FINISH 15 rounds WBR;)
6/12/12- Continuing on oral Methotrexate BID & Cytoxan qpm, but on chemo break
for 3rd week due to low counts.
6/15/12 – Yay! Resume chemoJ
6/25/12 – Chemo break again due to low counts L
6/28/12 – PET Scan & Brain MRI this week…
NED IS BACK!!! NED in the HEAD, NED in the BODY!

[tricia keegan]

Dear Denise, yours was the first post I saw here this evening and I was so sad for you but so pleased to read Stephs reply to you which I know would have made me feel better in this situation and give me hope.
I also pray you can feel the out pouring of our love and support for you so be brave and imagine us all there with you holding your hand and know you will get through this as so many others have! x

Delaney I'm praying you get good news on your MRI today and please keep us posted.

[bejuce]

&%&%&(W&(%&W(&% is right! I'm at a loss for words... But please do not despair. You can beat this like Steph and so many others. We'll be here cheering for you and supporting you along the way.

Many hugs,

Marcia

[Delaney]

Denise, there is hope, dont despair. My brain scan came back clean today and I start myocet in August for lung and skin lesions. Lets hope both of us come out of this NED!!!!!

[KDR]

Denise,
My dear friend, the shock of this coming out of the blue is devastating. There is a silver lining, though, and that is you caught it early. A friend, and I'm sure she'll chime in here, had Novalis--which Steph mentioned--and in one shot got those pesky mets. Please call on me if I can do anything at all. You are one special, strong lady.
Love
Karen

[Gerri]

Denise,

Let me add my good wishes to everyone else's. You have such a fighting spirit and have contributed so much positive energy to this board. I know that once you get over the initial shock that spirit will be back 10 fold. In the meantime, lean on us to get you through this rough time. Once you have a plan you will be able to breathe a little bit better.

Take good care.

[rhondalea]

When I logged on and saw the thread title and the name beneath it, I almost logged right back off again. I just wanted to crawl under the covers and deny, deny, deny.

I do not doubt that treatment will eradicate the intruders in your skull and get you back to the arms of NED, but I wish with all my heart that you did not have to go through this so soon after finishing treatment.

I'm sending a tsunami of good thoughts and a virtual hug in your direction, Denise. Karen's right--you're one special, strong lady.

Rhonda

[ammebarb]

Ah, #&#@! Sending you a hug and wishes for a good plan with few side effects and mighty devastation on those lesions! Also hoping that "sad" will pass and "fight" will soon prevail. Let us know how you are doing?

Barb A.

[meo]

No, no, no!
Your posts over this past year have inspired me, made me smile, given me hope and strength. Thank you for that.
Know that I am thinking of you and sending positive thoughts and e-hugs.
Post again as soon as you are ready to let us know how you are.

[candlegranny]

Denise, I m mad too...but I know you WILL beat it. it is our style. I read alot of positve notes from others that have ocercome this..you will too.
omg i need to call you..,i got my new boob..15 hrs and then 4 days later 4 more hours. coomplictions from radiated blood vessels in chest....had to take a vein from my lymphedmea arm saw him today still hve 3 drains in tow....lovin the tummy tuck and i have no pain at all. doc said i had the biggest boob in history made from belly fat!!lol you are in my prayers girl you will overcome these mets quick. i feel it!! message me your number and good time to call this week!! love ya! bonita

[LoisLane]

Delaney so glad your scan is clean! You are right you and Denise are going to continue to be NED.

[caya]

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

[BonnieR]

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.

[KsGal]

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.

[Julie D]

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

[Shobha]

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

[Sandra in GA]

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

[KDR]

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

[dawny]

Yes, we are all thinking of you Denise
Dawn

[AliciaB]

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.

[candlegranny]

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

[carlatte7]

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.

[LeahM]

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

[Vicki revised]

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!

[hutchibk]

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!

[JillaryJill]

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.

[gqmom]

Denise,
You are in my prayers.

[NEDenise]

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.

[Vicki revised]

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

[roz123]

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"

[Mandamoo]

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

[dawny]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

(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]

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]

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

[lkc Gumby]

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

[Laurel]

Hey Fellow Pennsylvanian!

Man, I get overwhelmed with my mother's illness and am off the boards for several weeks only to come back to THIS sucky news! Crap on the proverbial crapstick to this one! I am really sorry you have had to go through such a scary time but I am so glad you are with those terrific folks at Penn. Gotta give you a big clap on the back for bearing up with humor and class straight down the line. Sending you Pennsylvania prayers from a few miles up the pike. Keep us posted on how your treatment has worked. Stupid cancer doesn't know who its messing with!

[Paula O]

Dear Denise,

I'm thinking of you, rooting for you, and praying for you.

(((Hugs)),

Paula