Re: brain tumor---confused
This is my experience.
Last time I went on dex, I had numbness and tingling in my legs, ankles, feet, jaw, arms. It was awful. I call dex the devil. It makes me think insane thoughts, makes me sad, moody, and I even think, since I've been on the dex, my vision and dizziness is bad. Not worse, bad. I was completely fine before I went on the dex. I just had a few headaches, and that's it. I went on the dex, because I was going away on a trip and didn't want any issues while I was away. I'm back from my trip, and I'm getting off of the steroid, slowly. I'm on to 4mg, then I'll be on 2mg per day for a few days, then I go off. My "spot" is bigger after radiation, but they don't know if it's because of necrosis or progression. I wait to get another MRI in 4 weeks to see what's happening in there. I saw my MRI, and there doesn't seem to be too much swelling, so I'm going with my gut here and going off of the drug. The drug is supposed to reduce swelling, but I feel that it has done the opposite for me. It does cause swelling, in the face, joints, eyeballs (thus screwing up my vision even more). My brain just feels weird since going on the steroid.
I don't know if any of this helps you, but this is what I have found. I need to be me again, so see ya decadron!
Jill
oh and one more thing, when I was on high dose dex in October, my ankle hurt so much, that I couldn't even take a step up the stairs. messed up!
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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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