[Andrea Barnett Budin]

Did I mention that I have recently discovered, on my own, through a friend who was describing why she went off Effexor -- that my terribly spacey, shaky, foggy brain could well be NOT from my low red bld cell counts, but from Effexor! I called my onc immediately and told him I wanted to go off, knowing you need to wean off.

When my friend described her symptoms in detail, I realized that was exactly how I was feeling. I JUST READ THE POSTS SINCE 10/14 ON THIS THREAD AND AM AGHAST. WHERE HAVE I BEEN? It's like that. Whole segments of my life disappear and when I discover them, I am appalled! I kept thinking what is happening to me? Is it 9 yrs of H? Is it my HGB? Never put the Effexor in question, nor did my onc, who has heard my *complaints* for the last 5 mnths.

I was put on E to help my hot flashes. 37 1/2 mg, then 75, then still flashing up a storm, we added an addl 37 1/2 to nail it. Well, after a while I asked to go back to 75 as I was somewhere OUT THERE. I am now remembering... Slowly... So I got put on 37 1/2 for a wk. Felt better in a day. Even better after two. Now after a wk, I'm on 37 1/2 ev other day for a wk, then 37 1/2 ev 3 days for a wk. Getting better and better.

Now I'm reading these posts, and I am floored. May I say how delighted I am to hear I have been an inspiration. News to me. Also, I wanted to chime in here.

I get H ev 3 wks w/a half hr infusion. I get 500 ccs of saline vs the standard protocol of 250 ccs and I believe I do better this way. It was just the way I always got it since '98, then new pharmacist and I saw this little bag and questioned WHY, and he came out and explained. I felt dizzy and disoriented and wobbly after that infusion and now insist, through my onc, that I return to the old method. I know some do the infusion over an hr and feel better. Every one is different. Find YOUR best niche, I say!

Future -- to clarify -- I was borderline in '95 at initial dx. I was put on Tamoxifen after Adria4 and 8 CMF. When the bc recurred in '98 in my liver, I was told I was ER/PR- and to flush the Tamoxifen, it wasn't for me, could have caused the recurrence in my case. I was in peri-menopause for 6 yrs (age 40-46). My last period was '91. I was dx at age 50, post menopausal for 4 yrs.

I'm intrigued by the essential oils post, as I mentioned that for the last yr perfume does not leave any lingering scent on me as it always has. I am wondering about this annoying new thing and what it means.

Mary, I sent you a PM, but returned to the thread and see you were on Taxol, cousin of Taxotere, which I was on for 9 mnths ('98-'99). I had terrible deep muscle PAIN from the Taxotere during tx and long after. It even occurred at intervals yrs after. My onc confirmed that other patients reported the same thing, yrs after. The same was true of the foggy brain and memory thing, but worsened w/Effexor! I had neuropathy on Taxotere but not w/H. Insomnia across the board, no matter what, as friends who never had bc or chemo are experiencing at this age.

I am sluggish, but take supplements for this that help enormously. SEE *GAINING CONTROL OF YOUR LIFE* THREAD for my list and other important details, please! It's 12 yrs of gathered knowledge and experience I feel compelled to share w/all who'll listen.

Dry eyes started w/Taxotere. I'm talking severe! I had to use REFRESH+ saline drops every hr for wks before the eye pain went away (like ground glass was caught in there). Dry nose, use vaseline at night. Slightly drippy, annoying, mostly when I eat, which is inconvenient. A dab of tissue is good. During Taxotere I had to clutch a tissue every waking hr. I had to keep a ziploc in my bag to gather all the soaking wet tissues from constant tearing running down my face that tickled and drove me nuts! Pp kept thinking I was crying. So many were so kind, even the guy behind the counter at the Motor Vehicle Bureau when I moved from NY to Fla. IT'S OKAY. DON'T CRY. He felt terrible. He thought I was having an emotional reaction, like every did.

My eyebrows never grew back after Taxotere but did after Adria and CMF. My lashes hardly grew back. My hairline is pathetic, like a receding hairline. My widow's peak is gone. My thick wavy hair is gone. Replaced w/someone else's thin, bodyless excuse for hair. But it's hair, and I'm not bald, so I won't complain. Much. Still have dry skin. Use moisturizer lack crazy.

Metallic taste w/Taxotere. Not w/H. NO joint pain and no more muscle pain -- usually, which I attribute to my supplements (listed in detail in GAINING CONTROL OF YOUR LIFE) for those interested.

Nose bleeds w/Taxotere. No more w/H. Echo EF at 50 and holding. Supplements listed keep me from plummeting further I believe. Have doubled my PERFUSIA, explained in my list from nutritional oncologist. The fog is lifting going off Effexor. Who'd have thought that was the culprit?

Onc sent me for Brain MRI the other day. ALL IS GOOD, NORMAL, STABLE. That's a big relief. So -- Effexor. And I may decide to continue on 37 1/2, we'll see because it is supposed to contribute to hot flash relief and because I think I need some anti-depressant to feel more like ME, and because it weirdly has stopped my IBS (which I got from Taxotere, and has stayed w/me all these yrs till Effexor). So that's the good news and the bad. And it's really good to be back on the planet again with all your fabulous Warrior Women whom I've grown to love so.
Andi