Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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.

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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.

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

did u have headaches?

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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 ((())).

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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!!

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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.

Re: Brain Mets &%$#$!! :(
 

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...

Re: Brain Mets &%$#$!! :(
 

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.

Re: Brain Mets &%$#$!! :(
 

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,

Ugh!Re: Brain Mets &%$#$!! :(
 

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!

Re: Brain Mets &%$#$!! :(
 

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.

Re: Brain Mets &%$#$!! :(
 

&%&%&(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

Re: Brain Mets &%$#$!! :(
 

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!!!!!

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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.

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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.

Re: Brain Mets &%$#$!! :(
 

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.

Re: Brain Mets &%$#$!! :(
 

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

Re: Brain Mets &%$#$!! :(
 

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