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Old 07-17-2008, 05:55 AM   #1
mts
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Anyone premenopausal and taking AI ???

At a recent conference I attended, I spoke with a pathologist/bc researcher from M.D. Anderson regarding my low (less than 15%) ER positivity... and Tamoxifen...
I stopped taking tamoxifen due to nasty side effects.
The pathologist stated that AI's are given to premenopausal bc patients and that the drug is actualy better than tamoxifen anyway. What is provided to us is usually how informed the onc is regarding what is "out there" and how they keep up with latest treatments.

Anyway- she reminded me of the risk that DCIS poses and that no matter how uncomfortable we are with drugs- we have to treat ourselves aggressively -all the time.

So, I pose the question- Is there anyone on this board that takes an AI and is still premenopausal ???
Maria
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Old 07-17-2008, 08:58 AM   #2
Jackie07
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I am not. But I am posting so others can see your thread.
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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 07-17-2008, 10:21 AM   #3
Jean
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Maria,
Are you sure you heard the dr. correctly? From what I have been exposed to I have not heard of patients who are NOT Postmenopausal having the treatment option
of AI's....AI's are for postmenopausal women.

I do know that some women who are premenopausal or (perimenopausal)
have had the injections and surgery to push them into postmenopausal status in order to have the treatment option of AI's...is that what you are referring to?

See link below:
http://www.breastcancer.org/treatmen...al/who_for.jsp
http://www.breastcancer.org/treatment/hormonal/

There are a few women who have low Er+ and have
decided to take AI's (I know Becky did) in order to offer themselves another form of treatment and protection.
But as I said, I do believe they have also had the injections and some also have their ovaries removed.

Regards,
jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006

Last edited by Jean; 07-17-2008 at 10:27 AM..
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Old 07-17-2008, 10:55 AM   #4
mts
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Yup-- I heard it right: Pre (or peri) menopausal and taking AI's...
Women with infertility issues take AI's -so it is given to premenopausal women. Granted those women are taking the AI for other purposes but taking it nonetheless.

I know there were some italian studies that compared the two in premenopausal women and the results were inconclusive. Another thing- the standard dosage is 20mg and other studies have shown that even 1mg is sufficient. It seems that the dosage amount was an arbitrary amount from the onset of Tamoxifen becoming the gold standard. Yes, it certainly has kept cancer knocked down for so many women, but with the side effects of Tamoxifen, I just wonder why no further study on dosage amounts have been done. This dosage thing has me perplexed- since we now know that other cancer drugs can be overkill as well.
Don't get me wrong- I want to attack this dreaded disease with eveything humanly possible -- and I do not know if taking less Tamoxifen would work.
I will keep looking for answers ...

Maria
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Old 07-17-2008, 11:04 AM   #5
Jackie07
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From my very unreliable memory AI inhibits estrogen from all sources in our body and tamoxifen only deprives the hormone from the sex organ. So AI supposedly can do a better job in a pre-empt war again er+ breast cancer, but also has more side effect.
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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

Advocacy is a passion .. not a pastime - Joe
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Old 07-17-2008, 11:13 AM   #6
mts
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... and in my case (a little selfishness here)... what about those with less ER+ ?
A recipe for a cake seems to be better at measurements...

maria
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Old 07-17-2008, 12:24 PM   #7
Jean
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Maria,
I do know that it depends on the type of AI.
For instance I am now taking Femara and the dosage is 2.5 mg.

Arimidex and Aromison has different dosages.
The trials were extensive on dosages.
I would recommend you reach out to Becky on our board as she had a low ER+ and was pre-menopausal and wanted to take AI's...she is now taking Arimidex
and had the shots and the surgery. She would be a great source of information.

Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 07-17-2008, 02:19 PM   #8
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Jean is right. A pre-menopausal women should not take AIs without some form of ovarian suppression to make her in essence post menopausal. AIs reduce the amount of available estrogen by inhibiting the function of an enzyme that helps converse another substance (I can't remember what) into estrogen. If one is still pre-menopausal, this reduction actually could cause a negative feedback loop resulting in the production of more estrogen. I am on Femara, but I also have monthly Zoladex injections to suppress the function of my ovaries.


Jill
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Old 07-17-2008, 04:00 PM   #9
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I can remember a seminar I went to at our local Wellness Community and listening to the Oncologist from UCSF who was talking about the use of AI's for the treatment of er/pr+ breast cancer. Something she said really stuck with me and that was, "when a patient tells me she is no longer having hot flashes and she was pre menopausal before chemo (chemo put her into menopause), then I really worry, because if the ovaries are working, then the AI will not".

I would get a 2nd opinion on what that Pathologist told you.

Just my two cents.

Karen
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Old 07-17-2008, 04:28 PM   #10
Janelle
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You should check out posts by Erica35 on the www.Youngsurvival.org website. Click on "Bulletin Board" on the left side of the home page. Erica is a doctor and has been sifting through research on various hormonal therapies and summarizing it for the premenopausal crowd. From what I understand, you absolutely need to make sure your ovaries are shut down (either through ovarian suppression such as Lupron or Zolodex or have your ovaries removed) to consider an AI. As some of the other posters have mentioned if your ovaries are still working the AI could actually make your body produce more estrogen (which is why it can also be used as a fertility drug). Tamoxifen blocks your breast cells from absorbing estrogen.
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Janelle
Diagnosed October 2006 at age 37 wtih grade 3 IDC and high grade DCIS
Stage 1c triple positive, no node involvement but
vascular invasion
multifocal disease
Lumpectomy November, 2006
A/C every 3 weeks (started Jan., 2007 and finished March 2007); followed weekly Taxol (finished June 2007) concurrent with Herceptin (finished March 2008);
Bilateral Mast with immediate recon in Sept 2007; finished recon Dec. 2007
Started 5 years of tamoxifen Nov. 2007; started peptide vaccine clinical trial at MD Anderson October 2008 and finished active part of trial in April 2009 (monthly injections of AE37 peptitde (HLA type specific) with GM-CSF or GM-CSF alone depending on if I was in experimental or control group); started Zometa infusions June 25, 2009- 4mg every 6 months for 3 years (taking it "off-label" to try to prevent mets)
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Old 07-18-2008, 06:11 PM   #11
Becky
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I was premenopausal prior to chemo but beginning to near the natural age of menopause. At 46 I had blood tests to see if I was indeed postmenopausal because tamoxifen would not work for someone like me (statistically). My blood work showed I was postmenopausal so I began Arimidex. Within 6 weeks I got my period back. This is a known fact for some women and AIs are used to boost fertility and ovulation in younger women undergoing IVF treatment.

I had my ovaries removed (a sure fire postmenopausal move) as I did not want to take shots (another hormone) to stop the ovaries from working (plus ovarian cancer runs in the fam too).

AIs are for proven and bonefide postmenopausal women only. They cannot overcome the estrogen ovaries manufacture and can only prevent the estrogen the adrenal gland and fat cells make.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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