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Old 05-14-2007, 10:28 AM   #1
Emelie
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ER+ question

Hi ladies,
I hope everyone had a wonderful Mothers Day! I was told by my onc. that I am ER+ 5% and she didn't think it made much difference if I did hormone tx or not? I was wondering what you all think about that, and if any of you have had to make the decision based on a low percentage too?
Appreciate any input as I really am not sure what to think.
Thank you for any suggestions,
Emelie
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Old 05-14-2007, 11:12 AM   #2
Kim in CA
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Hi Emelie,

I am less than 10% estrogen + and have been on Femara since 2001. I was actually diagnosed as ER- innitially (because the percentage was so small), but when I had my recurrence in 2001, a specialist at UCSF said I should add Femara just to improve my odds.

Hope that helps! Kim in CA
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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...
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Old 05-14-2007, 07:36 PM   #3
Barbara2
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Weakly Positive

My original path port showed my ER was "+1" on a scale of 1 to 3, with +3 being the most positive. At that time we didn't know a "percent" for my ER, but he wanted me to take an AI anyway, because he said even if you are weakly positive, it may make a difference, so he advised taking it.
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Blessings and Peace,
Barbara

DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.
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Old 05-15-2007, 06:03 AM   #4
Emelie
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Thank you ladies for responding. I think I will give it a go. I was just not sure if other women have used the treatment with such a small percentage. I like the idea of "improving my odds" any way I can.

Thanks again, and have a great day!
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Old 06-01-2007, 02:40 AM   #5
shelli
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Red face Er+?

I am also only ER-6 considered borderline and Docs aren't real sure what to do with us. The concensus of most I asked was to use A.I's because any benefit we could achieve is better than none at all. Some great people on this site suggested to me to have the original pathology retested at another lab to confirm results and then base decision on results. I am now in the process of doing just that. If it doesn't improve or drops I think I may just stop the Femara due to bad side effects. I was on Arimidex and the pain in
joints, stiffness, falling, lack of coordination/balance was awful. I'm also so
weak and fatigued. I feel almost worse than when I went through all the treatment prior. Had even developed cardiomyopathy from Herceptin X52 wks. Both of these drugs are causing the same problems equally so it is really affecting the quality of life for me. I feel like an old lady trying to even walk and am only 53. Also have osteoporosis. For me it seems like it has gotten progressively worse so I might even stop it for a month and see if everything improves. Also, Onco gave me Elevil for neuopathy so I will also try this first. My onco thinks it may be from the Taxol, but I disagree since I stopped it over a year ago. I also think it may be due to stopping my Herceptin of which I had steroids given (Decadron) with each infusion and it may have masked all this. When I finished Herceptin that is when
it all really worsened. I hope this is helpful. Good luck & keep me posted on what you decide to do!
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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.
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