Aromatase Inhibitors for ER- or borderline

[shelli]

Hi everyone! This site is incredible. What a wonderful resource of information and terrific people. I'm a new member and very new at the computer and trying to figure out how to post, etc. First time posting - hope it works!
Iv'e met very few HER+ women and discovering this site makes me feel that
I am certainly not alone anymore. I felt so isolative for the past 2 yrs. going through all of this. I feel like celebrating my new found friendship with this
site. I am wondering if anyone else is on Femara or Arimidex who is also
ER- or borderline like me? My onco. & self thought I should take med. to
improve chances with my path. & decrease risk of recurrence. Am having
bad side effects (joint/muscle stiffness/pain, excessive fatigue, mental fog,
severe hot flashes, already have osteoporosis, etc.) Switched from Arimidex to Femara but no difference. I'm about ready to call it quits, I'm miserable
& it makes it difficult with so many side effects to determine if its solely the
reaction to the med. or possible mets. I recently finished 52 wks. of Herceptin. Just switched onco. & will now have CT's, MRI's, & Pet.

[sassy]

Hello Shelli,

Your side effects from Arimidex all sound very familiar. For me staying on Arimidex is a given as I am highly er+, pr+ and HER2+.

You may want to check with you new onc about your hormonal status and advisability of staying on AI.

Good luck to you!
________
LovelyChloe (http://www.girlcamfriend.com/cam/LovelyChloe/)

[Kim in CA]

Hi Shelli,

When I was first diagnosed 10 years ago my pathology report said I was ER-. In 2002 when I was consulting a BC specialist at UCSF for my liver mets, she said that I was actually less than 10% positive for ER. She thought that was enough to make it worth my while to take Femara. In the five years that I have been on Femara the side effects have become almost nil. Or maybe I've just gotten used to them!! I've been on Herceptin 5 1/2 years too, so it's hard to know what's causing what.

I have been NED for almost 2 years now, so something is working!

Kim in CA

[dlaxague]

Where was your pathology done? When it's borderline like that, I'd suggest getting a second opinion from somewhere that specializes in this. I sent mine to Baylor (had been ER 5%/PR 0%, Baylor said both totally negative). It's easy to send your own slides and blocks or you can ask your facility to send them for you. If you just send them any old where for a second opinion and there is a difference in the second opinion, you still won't know which is correct. That's why I say make sure it's an expert lab.

Debbie Laxague