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dearjilly · 04-15-2013, 01:03 PM

Thanks Ceesun.
Update: Going to taper down on the dex. From 8mg to 4mg, then see what's it's like to go off completely.
I'm back from Florida and MARRIED!!! I'm Mrs. McCullough.

Got married on Anna Maria Island Beach, just the four of us. (my little family)
Anyway, I am still trying to cope with the uncertainty of this brain poop.
I feel like I'm fine,, but get really scared about my vision. I just want my vision to either stay the same or get better. NOT WORSE!
I've been thinking to everything you've all said/written, and I hold on to all of it really tight when I go to the dark place, so I can grab on to the hope that you have given me and yank myself out. I love you ladies for your help.
I have an appoint with my onc tomorrow to talk to her about lapatinib or a clinical trail. I really want drugs, but she doesn't want to drug me if my brain is NED. I feel like I'm constantly having this discussion with her. I don't know what to do. My SRS doc said I should be be on a drug, so what gives?
argh.
anyway, chat soon.
xo Jilly

04-15-2013, 01:03 PM	#25
dearjilly Senior Member Join Date: Feb 2012 Location: Ontario, Canada Posts: 115	Re: Progression or Necrosis in the brain? Thanks Ceesun. Update: Going to taper down on the dex. From 8mg to 4mg, then see what's it's like to go off completely. I'm back from Florida and MARRIED!!! I'm Mrs. McCullough. Got married on Anna Maria Island Beach, just the four of us. (my little family) Anyway, I am still trying to cope with the uncertainty of this brain poop. I feel like I'm fine,, but get really scared about my vision. I just want my vision to either stay the same or get better. NOT WORSE! I've been thinking to everything you've all said/written, and I hold on to all of it really tight when I go to the dark place, so I can grab on to the hope that you have given me and yank myself out. I love you ladies for your help. I have an appoint with my onc tomorrow to talk to her about lapatinib or a clinical trail. I really want drugs, but she doesn't want to drug me if my brain is NED. I feel like I'm constantly having this discussion with her. I don't know what to do. My SRS doc said I should be be on a drug, so what gives? argh. anyway, chat soon. xo Jilly __________________ [ 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. [/SIZE][/FONT]