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Old 04-07-2009, 07:59 PM   #20
Darlene Denise
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Join Date: Aug 2008
Location: Virginia Beach, Virginia
Posts: 145
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
__________________
12/14/07 IDC ER- PR- HER2+++ LIVER METS AT DX CONFIRMED BY LIVER BIOPSY
01/14/08 2 AC TREATMENTS-NOT WORKING
02/04/08 13 TAXOL, CARBO, HERCEPTIN TREATMENT-EXCELLENT RESULTS!
05/12/08 HERCEPTIN EVERY 3 WKS
08/22/08 BRAIN METS! 8 <5MM
09/17/08 CYBERKNIFED BRAIN METS
10/20/08 BRAIN METS SHRINKING
12/29/08 BRAIN SCAN SHOWS 1 LESION GONE, 7 SHRINKING & STABLE, 1MM ? SPOT
01/16/09 LIVER REOCUR-XELODA/HERCEPTIN
03/02/09 BRAIN SCAN 2 LESIONS GONE, 5 STABLE, 1MM ? SPOT STILL A ?
3/27/09 REGRESSION OF 2 LIVER LESIONS XELODA & HERCEPTIN
06/08/09 STUPID BRAIN HAS 3 LESIONS
06/29/09 CYBERKNIFE
07/01/09 LIVER REGRESSION NO NEW METS
07/07/09 TYKERB XELODA HERCEPTIN
11/11/09 GEMZAR/HERCEPTIN FOR LIVER PROGRESSION
03/22/10 BRAIN MRI GOOD-3 SMALL NECROSIS LEFT FROM ORIG 11!!
03/26/10 CHANGE TO NAVELBINE/HERCEPTIN 3 LIVER LESIONS PROGRESSING IN SIZE
05/21/10 NAVELBINE/HERCEPTIN WORKING!
07/19/10 GOOD BRAIN MRI
08/20/10 LIVER PROGRESSION
09/08/10 TDM1 - NASHVILLE TN
01/10/11 LIVER RESPONDING TO TDM1
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