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Old 10-16-2012, 05:06 AM   #1
embur102
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Exclamation Thoughts on Aromatase Inhibitors?

Hello everyone!

I will be enjoying my last Taxol infusion this AM--YEA! Reduced dosage due to neuropathy.

My onc wants to add hormone therapy due to 15% ER+ (PR-).

I have many conflicting feelings, complicated by:
(1)Tamoxifen would be the drug-of-choice for my age (48) and premenopausal
status, however, it is contraindicated with the Prozac I take daily.
(2) He wants to push me through menopause with hormone injections so I can take an aromatase inhibitor
(3) AI side effects include cardiovascular/heart issues and significant bone loss/increased risk of fractures
(4) Heart is already taking a beating (no pun intended) with Adria and Herceptin
(5) I already have significant bone loss for a woman of my age
(6) Is 15% ER+ really that significant to warrant treatment--(HER2+++ is more likely to recur than 15% ER+, yes??)

I will be doing more research before I decide, but wanted to hear your thoughts/experiences.

Thank you, Sisters-In-Pink!!
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Old 10-16-2012, 12:35 PM   #2
tricia keegan
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Re: Thoughts on Aromatase Inhibitors?

I recently agreed to another two years of Arimidex making a total of seven years, I had an ooph as a preventative measure and so far this is working for me so I feel why fix what isn't broken??
I do get some joint stiffness as a side effect but its preferable to a recurrance so for me, this works and wish you well with your decision.
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 10-16-2012, 04:08 PM   #3
Laurel
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Re: Thoughts on Aromatase Inhibitors?

What is your prognosis? Occurrence risk? Without your history in your signature it is difficult to say whether the benefit out weighs the associated risks. A.I.s are not easy for many. If you are Stage 1 or 2 I would not consider it with only a 15% E.R. positivity.
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Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 10-16-2012, 07:38 PM   #4
Jackie07
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Re: Thoughts on Aromatase Inhibitors?

Hi,

I've been taking Tamoxifen since 2004 even though my ER is only 5%.

Thought I would be given AIs after my prophylactic hysterectomy/oophorectomy, but I was still given Tamoxifen and so far it's been working well.

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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

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Old 10-17-2012, 04:42 AM   #5
embur102
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Re: Thoughts on Aromatase Inhibitors?

Thought I had figured out how to make my bio appear on my profile, but I guess not.

Diagnosed April 12, 2012
IDC, 4,2 cm, ER+ (15%) PR-, HER2+++
2 of 14 nodes +, Gr 3, Stage 2b
Mastectomy May 25
AC x4, Taxol x 4
no rads
Herceptin 1 yr

My concern with AIs is exactly what Laurel mentioned....are the side effects worth the risk with only 15% ER+? I am thinking I have a higher chance of recurrence because of the HER2, not the ER+.

Obviously, I will have this discussion with my doc, but also wanted the stories of women who have been there. This journey would be infinitely more difficult without the support of fellow Sisters. Thank you!!
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Old 10-17-2012, 07:53 AM   #6
Lien
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Re: Thoughts on Aromatase Inhibitors?

Whether or not it's worth all the risks, I cannot say.

I did the ovarian suppression for 4.5 years and an AI. I had very few side effects and although my bone density decreased during the first 2 years, it stabilized after that. I never took bisphosphonates because of other issues and although I officially have osteopenia, I have no noticeable problems. I slipped and fell on a concrete quay but didn't fracture anything. I've also gone skiing each year and stick to the easier slopes.

I try to exercise and walk a lot, so I keep my bones as strong as I can. When I quit the AI and Zoladex, my periods came back, at age 50. Grr. But that may help me re. bones and heart issues, so I'm trying to look on the bright side.

Hope this helps a little.

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 10-17-2012, 08:06 AM   #7
Debbie L.
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Re: Thoughts on Aromatase Inhibitors?

Hi Embur,

Tough decisions. A few thoughts:

Who tested your cancer for ER? If it was done at a smaller local facility, it could be worth sending your tissue blocks for a second opinion at a comprehensive cancer center: http://cancercenters.cancer.gov/canc...ters-list.html

ER/PR testing is not always accurate, and when you're at the far end of the low spectrum, a small inaccuracy can make a big difference to your decision-making. It wouldn't be a bad time for a regular clinical second opinion also, just so know you've explored all options.

I'm not sure the reasoning about whether the ER or the HER2 is a bigger threat to the chance of recurrence is accurate. ER and HER2 probably are intertwined in stimulating growth so that blocking both works more than double as well as blocking one or the other.

An AI's cardiovascular effects are, at best, a vague issue right now.

The issue of Tamoxifen and other meds that affect CYP2D6 is far from clear also. In theory it should make a difference but many studies have not been able to find that it does. There are other anti-depressants that could be explored, if the idea of Tamoxifen with Prozac makes you too uncomfortable.

Let us know how the onc visit goes, and what your next step(s) will be.

Debbie Laxague
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3/01 ~ Age 49. Occult primary announced by large (6cm) axillary node, found by my husband.
4/01 ~ Bilateral mastectomies (LMRM, R elective 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's B-31 adjuvant Herceptin trial (no Herceptin, inducing a severe case of Herceptin-envy): A/C x 4 and Taxol x 4 q3weeks, then rads. Raging infection of entire chest after small revision of mastectomy scar after completing tx (significance unknown). Arimidex for two years, stopped after second pathology opinion.
2017: Mild and manageable lymphedema and some cognitive issues.

Last edited by Debbie L.; 10-17-2012 at 08:13 AM.. Reason: hit reply before I was finished.
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Old 10-29-2012, 04:07 PM   #8
Jackie07
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Re: Thoughts on Aromatase Inhibitors?

My new oncologist (the 'old' one who I'd seen for 9 years has moved back to his hometown) has just prescribed me Exemestane today! One of the reasons he mentioned was what's listed on the drug information sheet: "This medicine is an aromatase inhibitor used for treating advanced breast cancer in women past menopause whose disease has progressed after treatment with other medicine." "It is also used in the treatment of early breast cancer in certain women past menopause after treatment with other medicines."
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Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 10-29-2012 at 04:11 PM..
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