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Old 05-23-2013, 01:37 PM   #11
Andrea Barnett Budin
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Join Date: Oct 2005
Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,904
Re: Steroid/herceptin withdrawal questions for you!

Hi Jilly!

Just wanted to add that when I went on Coreg (changing cardiologists) the new doc commented on the current drug I was on, saying, They still make this?! I didn't think you could still get this. Expect maybe at the Smithsonian. I knew from the getgo I liked him.

He switched me to Coreg. But he started me on a low dosage and very slowly increased till my bp registered normal. You mentioned weaning off and it reminded me that we have to start w/lower dosages and see what our body has to say about that.

EYES -- I saw the Lutein cardboard mini billboard in the ophthalmologist's waiting room. I read it and I checked it out on line. Though it says for macular degeneration, which I don't have, it has helped -- stop my 4 mnth constant tearing out of my right eye, and has helped in general w/my eyes.

I first got the product from whoever the heck manufactures it, but checked out the dosage of both Lutein and the Zeaxanthin (silly name I never heard of). I double checked on line and found that at Vitacost there's a slight increase in the Z thing and I went for it.

Soooo glad to hear you're feeling better. And glad that you do B12, cause after yrs of being on it, when I stopped, I felt the way you were describing, which was reminiscent of me going off of Taxotere. The -- it'll take 3-6 mnths for you to feel right again, was wayyyyyyy off for me.

What's the throat and neck pain from, if you don't mind my asking?

Re zinc -- only 30 mg a day, or your belly hurts. And selenium seems to be really important I keep reading and hearing.

I take only 2 88 mg aspirin at night, but w/your history it may not be a good thing.

I hear you re cardiologist. My old one was -- older -- and excellent -- and truly caring, but the newer younger doc is more the right fit for me.

You know, I developed fluid around my heart (and lungs actually) w/Taxotere. When I went off, the fluid around my lungs went away -- which helped me breathe better. The fluid around my heart is minimal to small and remains so. I get now annual ECHOs, having ev 6 mnths for a # of yrs -- to check it out and make sure it stable.

At one point, my cardiologist asked if it was all right if he called my onc. He wanted to do a procedure in the hosp to see if the fluid had any ca. Onc bowed to cardiologist but -- Paul was uncomfortable, asked our friend/doc who said, don't go there /risky / not necessary -- and here I am all these many many yrs later, still with minimal to small fluid around my heart and STABLE.

Surprised your guy didn't pick up on the port thing. We have to watch them, even the really good ones. In the end -- WE are the head of our Team!

Make sure your saline doesn't have any preservatives. I learned that, so am sharing with you and anyone dealing w/that issue.

You're a sweetie, Jilly. I too am glad you're in my life!! Thanks a mill Jill, you are pretty awesome...

Love,

Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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