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- - brain mets (https://her2support.org/vbulletin/showthread.php?t=56969)

How long have you been living with brain mets? Mom was dx and had WBR in Nov.

Kim G

This is sad that no one is either in same boat
Or not living....

Hi Kim there are quite a few members here that have gone through WBR and living with controlled brain mets. If you search for " brain mets " on this website you will find lots of helpful info from people that have gone through this. Hope your mom will feel better soon !

I have brain mets now, and I am undergoing the whole brain radiation. I don't really know exactly what the brain mets mean for my prognosis as far as time and what have you. I am hopeful to knock them back with the whole brain radiation, and maybe eradicate them after with cyberknife, but I won't know much until the treatments are complete and we can scan to see where we sit. I still have tumor in my liver, which I take Herceptin for every three weeks, and we are scanning next week to see where that sits and what I need to do next. How is your Mom after the whole brain radiation?

She did her 10 treatments of WBR. She has a MRI and pet scan jan 16th. Losing her hair as we speak from the radiation. Besides that all else good. She too has liver and spinal mets so is doing herceptin, zometa, and flasodexomthly. We will know more after our trip to mayo clinic in 16th.

Kg, Please know that your Mom and you are in my prayers. Gods blessings to you both. I hope and pray all will go well with her scan on the Jan 16. Peace my friend,

Nancy

KG-
Sorry I didn't respond before! I was away, living...vacationing, working full-time, having a great life! Yes, we brain mets survivors are out here!
My lesions were found on July 23, 2012...so I'm coming up on 6 months...and I have never felt better!
My best to your mom!
Denise

Thanks for the comments. I hope to hear from more people! We will hopefully get good news in couple of weeks.

KG1993 , Your mom and all of you with Stage 4 brain mets are in my prayers for continued improvement. I am very sensitive and compassionate for all my bc sisters. Huge Hugs, Joanne

I was dx with brain mets & had wbr 2 years ago. It didn't get rid of the tumors, but they shrunk and look stable (no activity) on the scans.

Praying the same for my Mom Pam!

Thanks,
Kim

We recently found out that my mom has brain mets. She did 10 treaments of whole brain radiation and now her oncologist has prescribed Tykerb and Xeloda but we are thinking of doing Gamma Knife surgery. Does anyone with brain mets know about this method? Is it helpful?

Thanks
Mahshad

Been living for 7 years now since 2 brain mets found. I did not need the WBR as I had only the two mets and gamma knife took care of those.

Our founder Christine has lived at least 12 years since her first brain mets. Hope this will give you some encouragement.

Thank you very much StephN. I am so happy for you and everyone who is so brave. Just a quick question, you went off Zometa because there was no sign of the mets anymore, right?

Take care
Mahshad

It is encouraging. There is something so scary about it getting into your brain. KG..Im sure praying for your mom too. NED in the head would be...wonderful. ((hugs)) Please keep me updated. It's good to hear other people with similar stories. I have one WBR treatment to go on Monday, and I will really be glad to finish this up. :)

So glad you only have one treatment left KsGal. Woo Hooo so glad for you!
Praying for continued improvement for you! Hugs, Jo

Hi KG1933~
Welcome to the board. So sorry that your mom's diagnosis has led you to us but please know you've come to a wonderful place full of information, knowledge, experience but also compassion, encouragement and much kindness and support.
It may be a matter of semantics, but I don't consider myself living WITH brain mets...While I have had 2 bouts with brain mets, June 2010 - 1 lesion treated successfully with Novalis, then in January 2011 - 8 lesions, including 1 large one in brain stem, treated successfully with 15 rounds of WBR & have been NED in the head ever since, it's part of my past. It may be part of my future, but for now I focus on the success of my previous treatments that have cleaned up my brain.
I hope the same for your mom.

KsGal~ ONE MORE ZAPPER...YAAAAAAY!
Then the decadron weening begins! Here's to NED in the Head and no more decadron.

Keep the Faith~

Jml

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!
10/26/12 – Still NED in the HEAD, but single troublesome node in chest, precariously close
to superior vena cava/heart. Not a perfect scan, but pretty darn good.
Maintain current treatment and Echocardiogram on 11/1 to keep an eye on node.11/1/12 –echo shows normal cardiac function J & node non-threating,
but experiencing symptoms of Superior Vena Cava Syndrome (obstruction/compression)
12/3 - hold cytoxan & methotrexate bc counts too low.
12/13-moved up PET scan due to increased SVC symptoms
12/14 –No more NEDL node progression causing increased SVC symptoms
12/17 – repeat echo & new chest mri for closer look…
Radiation to chest node recommended, change of systemic treatment pending
12/20-started 15 rounds of rads to chest for SVCS
1/8/13- Brain MRI - still NED in the HEAD!
1/15/13- finished rads to chest, symptoms resolved, f/u x1mo
1/17/13 -will start pertuzumab, herceptin +taxotere...if plateletts improve by next thursday, otherwise just P+H.

WAY TO GO, JESS!!!!! KNEW YOU COULD/WOULD DO IT

Love
Karen

Thank you, Jessica. The fact that you are so strong and you did this and beat those brain lesions gives me the hope and encouragement that I, too, can put this behind me.
KG-Still sending lots of prayers and positive energy for your Mom. She crosses my mind most every day, as we go through this together. I hope she is feeling well today. Stay strong, keep the faith. We are stronger than this awful disease. ((hugs))

Brain mets stink. They are so scary and if you read literature and talk to doctors you get depressed. Here is a story I hope will inspire you.
Nina had a large brain met diagnosed on 11/2/2009. We did surgical excision, Cyberkife, and Tykerb/Xeloda. A couple of whack a mole radiations in the spring of 2009 and November 2010. Things looked stable, but in October 2011 started to have some hip/leg/back pain. Found three lesions on the brain surface and 20-30 satellite lesions in the spinal nerves. Went to the war room and came out with Intrathecal Herceptin and Topotecan. Got to the correct dosing and 90 days later saw no atypical cells, clean MRI scans, and other indications of disease no longer showing its head. Flare up at two points on labor day, but these are resolved. All I can tell you is to start at 40 mg of Herceptin via either an Ommaya reservoir or Spinal tap, with steroids for 3-4 weeks. Then go up to 1.5 mg/kg of Intrathecal Herceptin. In those cases where this has been done, the results are stunningly good. Have your doctor contact Dr. Loghin at MD Anderson Brain and Spine as she has four patients currently in treatment.

I am not here to save the world, but I am here to do good. I want to pay it forward for a wife that is alive 13 months after she was given a 90 day life span. We are living within 2.5 miles of her mother and I am enjoying new work. It is important to me to have others treated that have similar critical diagnosis. IF I can help you, that is just another smile for me for the day.