Brain Mets - Advice and Encouragement Needed

[Darlene Denise]

Courtney: I know and feel, all too well, all of your emotions. I had seven of those bastards in my head on 8/22/08. All of the docs advised WBR was the only way to go. I kept focused on the fact that the volume was low and that they were all in locations that were suitable for radiosurgery. Most were 2mm and the largest 6mm. I was afraid to try the pharmalogical route for fear more would pop up and I wouldn't have a chance at radiosurgery. I knew I did not want WBR. I had a difficult time finding a facility that shared my preference to treat stereotacticly. When I did, a new MRI to start the planning revealed one more 1mm lesion for a total of eight so they called the procedure off due to the number of lesions. Many times during all of this I questioned if I was doing the right thing and the answer to myself was, yes. I requested my case be reviewed by the university's tumor board admist tears and begging and fortunately my case moved forward. I had Cyberknife on 9/16 and 9/17.

I then wanted to start taking Tykerb to help with any micros that all of the docs said were going to be left behind. My onc was not on board with my wishes since I was NED neck down and we would have no way to measure if it was working and how long we should use the drug. I went to Dana Farber Cancer Insitute and met with a researcher/breast oncologist who specializes in trials with brain mets and Tykerb. She was in agreement with my onc. Since all of the mets had been treated and there is no clinical evidene that Tykerb prevents brain mets she did not advise it's use especially since it has toxicity issues and may need to be used for progression later on. She felt it could be a tool if another lesion presents, then we monitor it for drug effectivness. She also indicated that when Tykerb is used for brain mets it is best not to use it with Herceptin since the doseage of the Tykerb has to be reduced to pair it with Herceptin and may not be as effective. At the time I was NED and did not want to leave Herceptin. By the way, she did not agree with my decsion to go with radiosurgery since there isn't clinical evidence to support it. She did say that my decsion may prove to be right, since there isn't data to say it isn't. I quickly learned that it is an educated best guess on treatment due to lack of data. So, I went with what I wanted for treatment.

January brought news that two previous spots on the liver had started to grow again so I chose Xeloda to address them with hopes that it may somehow help upstairs in the noggin. I remain on Herceptin.

I have had three brain MRI's since Cyberknife 09/08 and so far so good.

My advice, don't panic and rush, get ALL of the info and make YOUR best decsion, it will then be the right one for you.

Wishing you only the best...Darlene

[Ceesun]

I thought I read a study that tykerb and xeloda could be a preventative for brain mets..can anyone clarify this. Ceesun

[pattyz]

Since I have avoided WBR since 9/02, this is what I have to offer. I wish it was not so long:

Dec. 1999: Age 50, Dx'd Invasive Ductal & Inflammatory.

Jan. 2000: Mast., 6/26 pos. nodes. ER+PR-, Heu2+++ StageIIIb

July 2002: Dx'd mets, mediastinal node/s , (surgical biopsy), 'spot' on lung and pelvis.

Sept. 2002: Dx'd brain mets. (mininally symptomatic) Two lesions, 1.5cm, 6mm. SRS focalized tx successful. Refused WBR.

Nov. 2002: Navelbine/Herceptin 4rnds for systemic mets, scans show NED.

March 2003: Progression of brain mets. 14 new lesions visable throughout brain, including a 3mm in brainstem/pons. Asymptomatic. Continue to refuse WBR. "Watch and wait " approach, treating in small batches (choosing largest, most problematic first) with two more SRS, two CyberKnife procedures through May 2004 (that's over the course of just over a year!) NED in body.


March 2005: Progression brain mets - maybe 10 new lesions, asymptomatic. (otherwise NED) 'watch and wait' approach until...

Aug. 2005: Dizzy 24/7 in the course of just one day. Begin Temodar/Xeloda.

Sept. 2005: Following 2 rnds T/X, MRi shows response of nearly 50% shrinkage in many brain mets, including one 'new' in brainstem/pons area. Dizziness gone.

Nov. 2005: MRi duplicate of previous films- after 4rnds T/X, mets remain responsive w/ more shrinkage nearing 50%. Continue Temodar/Xeloda.


Dec. 2005: Onc confers w/rad onc re: past scans. Determine that some of the 'new' lesions are not new at all, but old treated spots just vaguely visable. Current count 6-8.

Jan. 2006: MRi shows all stable. Continue chemo combo.


May 2006: Mri reports "stable, minimal edema, no new lesions." This report details the eight remaining brain lesions, 6 clustered in cerrebellum with one on pons/brainstem, one frontal lobe. Most being 2-5mm. Just one of 8mm and one of 1.5cm. No symptoms. Continue on chemo break, no other tx's currently.


July 2007: After 9 mos. 'Stable': Progression. After a break, resume Temodar (w/the Xel) and add Tykerb for first time.


Wow. I am still doing the Temodar w/Xeloda for FOUR YEARS..and the Tykerb for almost two. Without ever doing WBR....

See onc tomorrow to see what latest report says on last wks. Mri.

You can do it, too, Courtney!!
xoxoxpattyz

[karenann]

Patty, I told Courtney about you and your successful treatment for brain mets. I am so glad you posted.

Karen