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Old 04-01-2013, 09:14 AM   #13
dearjilly
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Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
Re: Progression or Necrosis in the brain?

Steph and Joan, thanks for your knowledge and more hope for me. I really hang on to your words on days like today. I went to the Doctors today and they seem to think it's progression. They can't say for sure. They say the tumour is so close to the brain stem, that they are not sure whether or not they want to biopsy. They said that 5 doses of radiation may be the recommendation, and that I go on Xeloda (? I think). I am interested in IT herceptin, but I need to do my research, as I'm not sure what the criteria is. I'm scared, sad, but trying to stay possible, especially reading what you ladies have gone through.
Not sure what else to say, other than I don't know what the heck is going on with me right now. Doctors are having a chat about me at 1pm EST, and he will call me back to let me know what they think. It's my decision, but I tend to go with the doctors, but that scares me too. Feeling a bit lost and confused.
Much love. And no this isn't some cruel April fools joke. That would be awful!
Love Jilly
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Feb 2013 - NED
Mar 2013 - thought I had progression, watching brain.
April 2013 - GOT MARRIED!!!!
May 2013 - looks like no progression, but necrosis and bigger.
Oct-Dec 2013 - Avastin tx
Nov 2013 - MRI shows necrosis shrinkage!!!!
Jan 2014 - Lepto Mening. disease found
Feb 2014 - WBR
March - BLAHHHH
April 2014 - Liver mets found
April 2014 to present - Chemo again, whooohoo. Fun!
July 2014, scans look good.
Stay on Perjetand hercertin.
Nov. 2014 more lepto-mening disease more WBR.
Feb 2015 more lepto-mening disease in spine and neck. More radiation.
Start on TDM1 no more Perjeta stay on herceptin
March 2015 more radiation in my thoracic area, more lepto-meningial disease
April 2015 trying to walk again.
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