HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 04-12-2007, 01:17 AM   #1
shelli
Member
 
Join Date: Mar 2007
Location: Las Vegas Formerly of Chicago
Posts: 13
Unhappy Aromatase Inhibitors for ER- or borderline

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.
__________________
SHELLI

5/05 IDC Gr3 T1CNO 1.7cm & DCIS Gr3 comedo necrosis
HER++ ER6/PR- Richardson 9/9 Ki67-94%
6/05 Lumpectomy & SN 4DDAC + 4DDTaxol, 36 Rads, Herceptin wkly X52 until 2/07
Cardiomyopathy LVEF 4l%/MUGA never stopped Herceptin, Echos higher EF's
Arimidex 8 mos. & now on Femara.
shelli is offline   Reply With Quote
Old 04-12-2007, 07:07 PM   #2
sassy
Senior Member
 
sassy's Avatar
 
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
Images: 4
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

Last edited by sassy; 08-22-2011 at 09:13 AM..
sassy is offline   Reply With Quote
Old 04-13-2007, 09:22 AM   #3
Kim in CA
Senior Member
 
Kim in CA's Avatar
 
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
Borderline ER -

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
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.


5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.

9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .

11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!

7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!

June -Dec 2004 UW Vaccine Trial.

7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.

Brain MRI @3 months NED!

2006-2011 brain/body still NED

8/04/11 Taking Herceptin break, will monitor with tumor markers.

6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.

7/23/12 CA15-3 now 49.3
Her2 Serum 26.8

8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49

11/7/12 Add weekly Taxotere for 4 cycles

2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.

November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!

Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara

Jan 2016 Begin Kadcyla

March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla

November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
Kim in CA is offline   Reply With Quote
Old 04-13-2007, 09:53 AM   #4
dlaxague
Senior Member
 
Join Date: May 2006
Posts: 221
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
__________________
3/01 ~ Age 49, occult primary announced by large axillary node found by my husband. Multiple CBE's, mammogram, U/S could not find anything in the breast. Axillary node biopsy - pathology said + for "mets above diaphragm, probably breast".
4/01 ~ Bilateral mastectomies (LMRM, R simple) - 1.2cm IDC was found at pathology.
5 of 11 axillary nodes positive, largest = 6cm. Stage IIIA
ERPR 5%/1% (re-done later at Baylor, both negative at zero).
HER2neu positive by IHC and FISH (8.89).
Lymphovascular invasion, grade 3, 8/9 modified SBR.
TX: Control of arm of NSABP B-31's adjuvant Herceptin trial (no Herceptin): A/C x 4 and Taxol x 4 q3weeks, then rads. Arimidex for two years, stopped after second patholgy opinion.
dlaxague is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 06:38 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2026, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter