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Old 03-11-2015, 04:28 PM   #1
LizzElliot
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Advice needed ... Tamoxifen or AI?

Hello ladies,
May I get advice. I have been on Tamoxifen for about 10 weeks and have gained 15 pounds. I did not gain weight in chemotherapy. My diet is mostly raw vegetable salads, often with some form of protein or seeds. Yet, the weight kept creeping up, so two weeks ago, I joined a gym. Working out for at least 30 minutes but usually 1 hour or more every day has still shown no weight loss, but weight gain.
Last week while in for Herceptin I asked to be tested for menopause status. (My onc had said at one year's time since the start of chemo, if I did not get my cycle back, I'd be considered post-menopausal, and presumably then switched to an AI.) So in April, if my cycle does not return, I would be considered post-menopausal, but at this weight gain rate, I wanted the test and the results show post-menopause.
So oncologist has approved starting Femara and quitting the Tamoxifen.
Yet, I'm reading here that many of you tried Femara and went back to Tamoxifen. Yet it seems many of you are post-menopausal. I thought we all switch to an AI after menopause. Is that not true, or does Tamoxifen work on pre- and post-?
I'm not sure why my doc choose Femara, but given the choice, would you recommend one over the other in the family of Femara, Arimidex and Aromisin?
I'm told there will most likely be side-effects to the AI, but my thought is to go through that transition before I start a new job. So that's my hurry. Plus I am hoping the new side effects are not weight gain.
I have not taken Tamoxifen for two days now and have seen a one pound loss each day.
I have Hashimoto's (hypothyroid), but a recent test shows that my TSH is very, very low and my T4 Rx has actually been reduced to get me back in range.
Due to all this, I can only think that Tamoxifen caused the weight gain.
I've been told people can gain 10 pounds but then it levels out. Since I've gained 15# and still gaining despite a very conservative diet and a fairly rigorous work out schedule, it seems I am not "stopping at 10 pounds" nor "leveling out".
Any similar experiences or advice or warnings would be so welcome!
-Thank you!!!!
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Old 03-12-2015, 08:54 AM   #2
Lucy
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Re: Advice needed ... Tamoxifen or AI?

I gained 30 pounds during chemotherapy. When I went off, I worked diligently to lose the weight and was 15 pounds down before I started anastrazole (aka arimidex). Since starting the anastrazole (I was reluctant to take it so waited roughly 3 months after chemo to start) I can't lose weight to save my life, no matter how I eat. I told my oncologist that it doesn't matter if I have a diet of chocolate and cookies or a healthy vegan diet, the number on the scale doesn't fluctuate. It's very frustrating. The point here is I don't know if your weight would go up on anastrazole but losing weight isn't something I'm able to do on anastrazole.
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Old 03-12-2015, 01:13 PM   #3
Carol Ann
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Re: Advice needed ... Tamoxifen or AI?

Hi LizzElliott,

My onc started me on Arimidex right after my last round of chemo, last April. I gained weight on chemo and now more weight on Arimidex. I know it is not what you want to hear.

I eat pretty healthily and exercise nearly every day, including walking and lifting weights. I was pretty down about it myself today, but in the end, there is no way I would stop taking the Arimidex.

I talked to one of the onc nurses today and she confirmed for me that Arimidex makes it just about impossible to lose weight.

That being said, I figure all I can do is continue to watch what I eat, and exercise. There are studies out there that support exercise as being even more important to prevent recurrence than weight/diet. Which is a good thing if the pill they give you to "keep you cured" (as my onc's nurse put it at my checkup on Monday) makes you gain or at least makes it impossible to lose.

It is what it is, I guess. In the end, I want to know I'm doing everything I can to prevent a recurrence/metastasis, and if that means being unable to lose weight, there it is. Not that I am not unhappy about it. I most definitely am.

Carol Ann
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July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 03-13-2015, 11:37 AM   #4
LizzElliot
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Re: Advice needed ... Tamoxifen or AI?

Thank you Lucy and Carol Ann. Yep, not what we want to hear, but it is what it is. Ugh. Maybe I should have stuck with the "devil I know", but I'll give the Femara a try starting Monday and will share back what that devil does!
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Old 03-13-2015, 01:04 PM   #5
Carol Ann
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Re: Advice needed ... Tamoxifen or AI?

Yes, thanks, I am curious to see how you do with Femara!

TGIF!

Carol Ann
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July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 03-13-2015, 03:31 PM   #6
tricia keegan
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Re: Advice needed ... Tamoxifen or AI?

I must be in the minority as I lost weight on chemo I could ill afford to, then spent eight years taking Arimidex and gained nothing until four years ago when I quit smoking. I should have done it far sooner or course but better late than never, but I can honestly say any of these cancer treatments didn't cause me to gain any weight and it was only since quitting smoking and eating more I've put on and I'm now trying to lose it. I also like a glass of white wine which is full of calories too so that needs to be cut down.

My Onc agreed I should have an ooph and then take Arimidex as although my blood test showed I was post menopausal, he said I could get a period still even two years later. I was glad to do this and had no regrets and arimidex side effects were easily managed too.
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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 03-13-2015, 04:41 PM   #7
linn65
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Re: Advice needed ... Tamoxifen or AI?

Hi there,

I am not sure how old you are, but I had the same exact question. My first ONC did all those blood tests to see if I was post menopausal at 47 or 48 and they came back, and I was. Then I went to a 2nd ONC and she said that wss a useless endeavor because all of the therapy and tamoxifen would show that I was because its supposed to be shutting down your estrogen.

Now, I sm 49 and had a reoccurrence, and I am not on arimidex. It has I think caused my joints to feel like I have arthritis. She is letting me go off for 3 weeks to find out which I started this week. I am also on Herceptin and projecta so it could be that too. However, again I might have had progression so I will be having scans next week and If I have I will get TDM1. And then who knows what SE's I will have. Another day in the life.....

She did say tamoxifen was tried and true for 40 years and I was premenopausal when I started and I should stay in it for 5 years and then we would discuss an AI but reoccurance happened so treatment path did too. Hope this makes sense and hope things go well for you!!
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myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 03-14-2015, 08:40 AM   #8
Becky
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Re: Advice needed ... Tamoxifen or AI?

My story - I did not gain weoght on Tamoxifen or Arimidex. That said, when chemo was over, I was 46 so I was automatically put on Tamoxifen. Herceptin wasn't. Available right then so I wanted to do everything possible to help myself since I had a positive node. I wanted Armidex. Got the bloodwork and it showed I was post menopausal so I started. At almost the same time, Herceptin was available - yea. Started Herceptin alone. Well, low and behold, I get my period. Onc tells me to stop Armidex and go to gyne for ultrasound. This takes 2 weeks for appointment. That ultrasound shows that I am about to ovulate again (double ovulation - one one each side). So gyne said, do you want to schedule an oophorectomy. So thats what I did. Now Anyone who knows me knows I think alot. So about a year later there is an article about Arimidex being used off label to assist in ovulation issues in premenopausal women for infertility issues. Seems it can help. I'm thinking no s... as I was double ovulating. So I think I wasn't truly quite there in menopause. My fsh/lh was there but I bet my estradiol level probably wasn't and Arimidex did its "infertility" fix on me since I wasn't quite menopausal. So my advice is make sure your estrogen panel is done. Estradiol and estrones. If they arent in the menopause range, Arimidex won't work and you wont know it for 6-8 weeks till your period suddenly comes back. What a freak show all that was.
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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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Old 03-14-2015, 04:48 PM   #9
Heathcliff4
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Re: Advice needed ... Tamoxifen or AI?

Hi Liz,

Honestly, I think it's the menopausal state, not the drug. At least, that's my experience. I tried Tamoxifen and was so sick and depressed I could barely move. It's no exaggeration to say I felt as bad as I did on chemo. I tried AI after that and found that after 4 months, I was aching and depressed and miserable. I've been on a holiday from both drugs for about 3 months now but my ovaries are suppressed (I'm 44 and my ovarian function was screaming back after 6 months post chemo).

All that said, I've felt decent and I have always been athletic. But, I have started packing on the pounds. I've had to cut back significantly and up the exercise. If you are able to tolerate the AI, I believe that studies are showing that it actually has an improved risk reduction vs. Tamoxifen (with ovarian suppression).

Good luck.

Kathryn
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Old 03-14-2015, 04:51 PM   #10
Heathcliff4
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Re: Advice needed ... Tamoxifen or AI?

Fyi, clarifying that it shows an improved recurrence reduction over Tamoxifen and ovarian suppression.
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Old 03-15-2015, 02:28 PM   #11
europa
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Re: Advice needed ... Tamoxifen or AI?

I was injected with Zoladex to shut my ovaries down and I've been on Tamoxifen. Tamoxifen alone make me gain weight but it did make it impossible to lose weight. However 4 weeks after my Zoladex shot I gained 10 lbs of water weight. And they gave me another shot last week so I'm in for an additional gain I assume. So my onc told me I can stop the shots as it is not crucial in my case since my ER levels in my tumor were low at diagnosis. But will I be able to lose the additional weight...I don't know. Hoping though.
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DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.


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Old 03-16-2015, 07:53 AM   #12
jaykay
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Re: Advice needed ... Tamoxifen or AI?

I was on tamoxifen for 4.5 years, gained 5 pounds, lost it within a month of going off tamoxifen. Then was on Femara for 5 years and didn't gain any weight.

I retained a ton of fluid with tamoxifen and took fluid pills every other day. I HATED tamoxifen but it was the only game in town until the AI's came out.

I am back on Femara since my 2nd bout (almost 2 years) and haven't gained weight other than a few pounds due to my chocolate indulgence :-)

The menopausal state definitely contributes to weight gain. Also, I stopped smoking 7 years ago, gained 13 pounds in a year. Went on a strict diet with prepared foods (portion control) and lost the weight in 8 months
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March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 03-18-2015, 10:28 PM   #13
LizzElliot
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Re: Advice needed ... Tamoxifen or AI?

thank you all. so much to think about. i took mynfirst Femara today and am afraid to put head to pillow in fear my hair will start falling out. hopefully it's just a matter of having surfed and read too much on the internet!
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Old 03-19-2015, 07:40 AM   #14
jaykay
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Re: Advice needed ... Tamoxifen or AI?

Oh Lizz - you're hair isn't gong to fall out :-). I hate to blame side effects on menopause, but it also contributes to thinning hair. While estrogen is bad for many of us, it is also good stuff!.
I've been on Femara on/off for 7 years. My hair was very thick when I started and is still very thick. And I know everyone is different.

You'll be fine

Janis
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March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 03-19-2015, 07:55 AM   #15
LizzElliot
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Re: Advice needed ... Tamoxifen or AI?

Janis, If I knew where to find you I'd come and give you a huge hug right now. Thank you, thank you for the reassuring words! Truly! xo Lizz.
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Old 03-19-2015, 10:36 AM   #16
jaykay
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Re: Advice needed ... Tamoxifen or AI?

Anytime!
xo
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March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 03-19-2015, 06:20 PM   #17
suzan w
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Re: Advice needed ... Tamoxifen or AI?

Where would we be without our senses of humor??! Even though this subject is not funny, I found myself chuckling more than once at some of the dialog. I gained weight on chemo. I gained more weight on arimidex. No matter what, that scale just kept insisting I was putting on weight. I am now 30 lbs heavier than I was 10 years ago at the start of my cancer journey. I am also cancer free. I take nothing for granted anymore...seize the day...and the doughnuts!!!
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 06-07-2015, 09:40 AM   #18
Camiddendorf
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Re: Advice needed ... Tamoxifen or AI?

I was 62 at time of diagnosis, so obviously post menopausal. When the medical oncologist was determining hormone therapy he based his decision on the results of my CYP2D6 status. As I understood him to say my results indicated that tamoxifen would be ineffective for me, therefore I was prescribed Femara (letrozole). I am curious as I have not read others mentioning this test and I thought it was pretty standard.
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Old 06-09-2015, 07:32 AM   #19
v-ness
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Re: Advice needed ... Tamoxifen or AI?

hi there - i am one who should be on an AI but is not, but it's because i had zero tolerance for any of them. allergic reactions, hair loss, severe bone pain. so even though after cancer i was indeed menopausal, i have been on tamoxifen for 5 yrs and will be continuing on it. i gained 20 lbs during chemo and lost all 20 and a little more while still on tamoxifen and without doing anything special to lose (i'm not into diets, but i do work out fairly regularly). i hated AI's but i hope one of them works well for you and gives you the results you need. valerie
__________________
8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
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Old 06-09-2015, 03:50 PM   #20
Camiddendorf
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Posts: 7
Re: Advice needed ... Tamoxifen or AI?

I am so very sorry for your loss and pray your boyfriend will have good results from treatment.
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