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

LoisLane 07-24-2012 07:53 AM

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

yanyan 07-24-2012 09:34 AM

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 ((())).

Kellennea 07-24-2012 10:17 AM

Re: Brain Mets &%$#$!! :(
 
Denise, I am so sorry for this news. I will send prayers up, and a hug to you.

Vicky 07-24-2012 10:34 AM

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!!

KristinSchwick 07-24-2012 10:37 AM

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

StephN 07-24-2012 11:18 AM

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.

Jackie07 07-24-2012 12:02 PM

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...

Becky 07-24-2012 12:19 PM

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.

Sheila 07-24-2012 12:25 PM

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,

jml 07-24-2012 12:29 PM

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!

tricia keegan 07-24-2012 02:43 PM

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.

bejuce 07-24-2012 03:08 PM

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

Delaney 07-24-2012 03:22 PM

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!!!!!

KDR 07-24-2012 03:56 PM

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

Gerri 07-24-2012 05:01 PM

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.

rhondalea 07-24-2012 05:06 PM

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

ammebarb 07-24-2012 05:33 PM

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.

meo 07-24-2012 05:58 PM

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.

candlegranny 07-24-2012 06:22 PM

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

LoisLane 07-24-2012 07:35 PM

Re: Brain Mets &%$#$!! :(
 
Delaney so glad your scan is clean! You are right you and Denise are going to continue to be NED.


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