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Old 05-22-2013, 07:19 PM   #10
dearjilly
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Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
Re: Steroid/herceptin withdrawal questions for you!

Thank you my ladies for the Coreg info. I do believe it works, but I know that every time I was taken off herceptin, my heart went back up on its own, before I was ever put on Coreg. I will ask for another muga soon, to see where I'm at.
Andi, it's funny you even brought up Lutein. I went to the natural food store the other day with a piece of paper with that word written on it. LOL I didn't pick any up, as my problem is in my brain. I mean, I'm sure it's great to take none-the-less, but I wasn't sure if I should take it. I needed to do more research.
I do take B12 daily. That and zinc, vit C, Omega369, vit D3, multi. But I do question the aspirin though. I asked my onc about taking it daily (as I've heard it works wonders for bc pts) and she didn't want me to take it, because she's afraid of bleeding due to my brain issues. I'm not sure what to do about that. I only took it twice.
You know Andi, I have been feeling better. Other than some throat and neck pain, I feel pretty good. My energy is a bit better. The lower dose of Coreg is better for me, but I'm still tapering off. I think I will see another cardiologist though. I really want a second opinion. My cardiologist had been my dad's cardiologist too, and I had an opinion of him before I even met him. I tried to give him the benefit of the doubt, but I've had a hard time with him. He thought I had a tumour in my heart, and it ended up being my port. argh! I even thought that's what it was and reminded him that I had a port during my pre trans esophageal echo (down parascope) procedure. It was AWFUL!!!
Anyway, I know that I would need a different cardiologist to tell me to go back on Coreg in order for me to do so.
It's true though about the s/e being diarrhea eh? That's poopy! That is one thing that I haven't had trouble with. Knock on wood.
Thanks Andi for all your info regarding my issues. I really do appreciate it. You seem very wise. Love it! Happy you are in my life. xo
It's so very nice and thoughtful of you to take out the time for me. Really. Thank you a million times.
Oh...and thanks for the advice on the eyeballs. My eyes are better as well, but I do have some normal saline around, in case it gets bad again.
Thanks a mill, Jill xoxoxo
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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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