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All TopicsForum: Hormonal Therapy - Before, During and After → Topic: Any Alternatives to Tamoxifen for Premenopausal Women

Topic: Any Alternatives to Tamoxifen for Premenopausal Women

Forum: Hormonal Therapy - Before, During and After — Risks and benefits, side effects, and costs of anti-estrogen medications.

Posted on: Jul 6, 2011 05:17PM

DebRox wrote:

I am 3/4 way through chemo and my MO wants to meet with me a week before final chemo and I know why.  It is to discuss the next stage of treatment, hormonal therapy.

I am 46 and premenopausal and HAD estrogen positive BC. Its gone now by way of surgery and chemo.

I have read a number of the tamoxifen threads and do feel quite frightened about that next stage, especially given my history of endometriosis.  I have had to have a few D&C's, hysteroscopies, laproscopies etc.  I have had endo lasered off other organs etc.  So the thought of tamoxifen frightens me immensly.

Are there ANY other options out there? 

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Jul 6, 2011 05:23PM sweetbean wrote:

Fareston!  Also known as toremifene.  It's basically the same drug, but with far fewer side effects.  I am stalking my MO to put me on it - I'm supposed to start Tamoxifen next week.  Search toremifene/Fareston - there are other premenopausal women on BCO that are taking this drug.

Dx 11/18/2010, ILC, 5cm, Grade 2, 2/15 nodes, ER+/PR+, HER2+
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Jul 6, 2011 05:27PM Maya2 wrote:

I took grapeseed extract, which is a natural AI. I'm 9 years since diagnosis and doing fine. There is a current study on GS extract being done by the Mayo. The results should be out soon, if not already. The study was done to determine the dosage.

“Life is not a journey to the grave with the intention of arriving safely in one pretty and well preserved piece, but to slide across the finish line broadside, thoroughly used up, worn out, leaking oil, and shouting GERONIMO!!!” ― Bill McKenna
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Jul 7, 2011 11:17AM DenimBlue wrote:

My MO mentioned Raloxifene (brand name: Evista) as an alternative to Tamoxifen. Works the same way, but is supposed to have fewer side effects.

- Jeanne. "Anything is possible... except skiing through a revolving door." (Author unknown) Dx 4/28/2011, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Jul 7, 2011 01:26PM awb wrote:

DenimBlue-----Evista is only approved for post menopause.  (I've taken both tamoxifen--5 years----and evista---over 2 years now---and don't really notice much difference between the 2. (I tolerate both well with minimal SEs).  Don't know anything about Fareston.

Anne 

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Hormonal Therapy 02/27/2009 Evista (chemical name: raloxifene, class: selective estrogen receptor modulator (SERM)) Hormonal Therapy 10/29/2003 Surgery 04/04/2005 Prophylactic (also called preventive) removal of the ovaries Surgery 09/15/2003 Lumpectomy in one or both breasts: Lumpectomy in my right breast
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Jul 7, 2011 04:23PM , edited Jul 7, 2011 04:24PM by ICanDoThis

Deb

I know it's scary, but remember that most women who post here are women who have issues, not the thousands who don't have issues. And, I think of some of the sisters here who have gone to Stage 4, and passed, who had chosen not to try Tamoxifen (like the very special RobinWendy).

Tamoxifen works really well in pre-menopausal women; it has an amazing track record - longer, really than almost any other treatment. Our docs have fixes for lots of them

I quit after 2 years, because I had joint pain, but I was post-menopausal, with a grade 1 tumor, no nodes, and incredible margins. And my onc said whatever I decided, since my odds are very good.

Your tumor was grade 3, and larger than 2 cm. And you have a long life ahead of you.

The good thing about these oral meds is you can stop. I would strongly recommend that you be really honest with your oncologist, and remember that s/he is on your side.

I wish you didn't have to make this decision.

Sue

Sue - Proud to be Krista's Mom Dx 12/28/2007, IDC, 1cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Jul 7, 2011 06:21PM sweetbean wrote:

Hey there, just weighing in again about Fareston.  I found five recent studies showing that Fareston is just as good as Tamoxifen but with fewer side effects and toxicity.   I don't believe that if you choose Fareston you are placing yourself at risk.  I just think our oncs tend to prescribe Tamoxifen as a knee jerk reaction because it has been around 30+ years.  However, Fareston has been around since 1995, so it's hardly untested.  

Dx 11/18/2010, ILC, 5cm, Grade 2, 2/15 nodes, ER+/PR+, HER2+
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Jul 8, 2011 08:16AM peggy_j wrote:

FWIW, I asked my MO about raloxifene. She said it's used to prevent BC in high risk women but not to reduce risk of recurrence. Seems confusing. Not sure what the SEs are for raloxifene, since I stopped researching it.

ICanDoThis has some excellent advice. Yes my BS said the same thing, with drugs you do have the option to stop taking them if the SEs are too much. My understanding is that for some women the SEs decrease after a few months.

Dx 2/2011, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Jul 8, 2011 02:40PM sweetbean wrote:

Just to be clear, raloxifene is Evista.  Fareston is toremifene.  I found five studies showing that toremifene was just as good as Tamoxifen and some of the studies included premenopausal women.  This is unusual because most studies don't include us.  So I stand by my recommendation that you ask about Fareston.  I have been pestering my MO about it.  My BS prescribes it on a regular basis becuase he knows the science is strong. He is the Chief of Breast Surgery at a major hospital, so he knows his stuff.

It's great if a drug works well, but if people are quitting because of side effects, that's a problem.  And Fareston looks like a good solution for the premenopausal set.

Dx 11/18/2010, ILC, 5cm, Grade 2, 2/15 nodes, ER+/PR+, HER2+
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Jul 9, 2011 01:08PM , edited Jul 9, 2011 01:08PM by peggy_j

sweetbean, thanks for sharing that info that toremifene is just as effective a tamox. I did a quick google search and a few sources said it was only for post-meno women; but when I went on PubMed, it's clearly listed as a SERM (not an AI). So much crap to sift through--arg! Could you post some/all of those studies you found? I've been on PubMed researching several different BC topics and I'm starting to get loopy. (one study I skimmed about toremifene had a very very small group of patients--41 total and just 11 pre-meno. I'd love to read studies with larger patient groups)

BTW, I'm surprised that your BS is prescribing a SERM. Isn't that the job of the MO? I've asked my RO and BS about their opinion of tamox in my case; they shared their opinion but deferred to the MO who has more experience/data. (or she should!)

Dx 2/2011, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Jul 9, 2011 01:21PM peggy_j wrote:

DebRox, it looks like the scientific community is studying other SERMs, like arzoxifene and lasofoxifene. I found a study pubbed this year. It looks too early to be Rx'd but maybe...if you're really concerned, there might be clinical trials or ???  I only stumbled upon this one study so you may want to do your own research.

Prevention of breast cancer by newer SERMs in the future.
Powles T.
Parkside Oncology Clinic, London, UK. hilary.dummer@parkside-hospital.co.uk
Abstract: The selective oestrogen receptor modulators (SERMs) tamoxifen has been shown to reduce the incidence of oestrogen receptor positive breast cancer by about 60 to 70% in healthy high risk women. The oestrogenic effects of tamoxifen caused a beneficial effect of reduced bone loss and fracture risk in postmenopausal women. However there was also significant gynaecological toxicity including an increased risk of endometrial cancer. Further clinical trials have evaluated the newer SERMs raloxifene, arzoxifene and lasofoxifene. The latter has been shown to significantly reduce the incidence of breast cancer, vertebral and non vertebral fractures, major coronary events and stroke with no significant gynaecological toxicity.

PMID: 21253796 [PubMed - indexed for MEDLINE]

 http://www.ncbi.nlm.nih.gov/pubmed/21253796

Dx 2/2011, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Jul 9, 2011 04:58PM sweetbean wrote:

peggyj, if you search "toremifene" and "fareston," the studies will pop up.  BCO never lets me cut and paste.  grrrr...

I found a few on pre-menopausal women.  I wasn't expecting many, because nobody ever does research on us.

 My BS wasn't prescribing it to me, just suggesting it. He prescribed it to other patients that I know after they had problems with Tamox.  I figure, why wait until there are problems?  Currently stalking my MO....

Dx 11/18/2010, ILC, 5cm, Grade 2, 2/15 nodes, ER+/PR+, HER2+
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Jul 9, 2011 05:03PM Omaz wrote:

sweetbean - I can paste in Internet Explorer but not Firefox if that helps.
Dx 6/21/2010, IDC, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Jul 10, 2011 08:38AM cp418 wrote:

http://www.cancernet.co.uk/fareston.htm

http://www.chemocare.com/bio/fareston.asp

http://www.rxlist.com/fareston-drug.htm

 http://www.anabolicsteroids-hormoneknowledge-bigmuscles-drugs.com/toremifeneupdate.html

http://www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Product_Information/human/000091/WC500020689.pdf

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Jul 16, 2011 01:20PM CristlC wrote:

I am taking Lupron instead of Tamoxifin and am pre-menopausal.  I am now 40.

Pathology from Bi-Lateral showed IDC (.4cm) in same breast as DCIS and nodes negative Dx 6/25/2008, IDC, <1cm, Stage I, 0/0 nodes, ER+/PR+, HER2+
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Jul 16, 2011 07:55PM Chocolaterocks wrote:

cristi

would you add some more information on lupron -how long? side effects? and why/ instead of tami....

I am taking falestron just switched  from tami-

thanks

chocolate

Dx 1/13/2011, ILC, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Jul 16, 2011 08:17PM kmur wrote:

Hi Ladies~ Thought I would chime in here to say I am also on Fareston. My ONC really had planned to use Tamox. but I was a poor matabolizer so...I am doing Fareston. I thought it was interesting that his first plan was Tamox.....I know the literature indicates it to be used for BC that has spread and actually it also has some side effects too. I have been on it for about 10 months and really have had no problems. At first mild headache and some fluid retention,but now no headache at all. Do have hot flashes but not sure if that may be from chemopause still. Hope this helps. I also have a high grade tumor  mine with node involvement so ....I feel like we have to fight with every weapon we can. Good luck to you with your decision.

Kim Dx 4/7/2010, IDC, 2cm, Stage IIIa, Grade 3, 4/19 nodes, ER+/PR+, HER2-
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Jul 21, 2011 12:17PM CristlC wrote:

Re Lupron - My Onc told me I would be on it for 3 years.  The reason for Lupron instead of Tamox was that I was 37 and still hoping to be able to have children.  Apparently, "things" go back to "normal" quicker when you stop Lupron as compared to Tamox - meaning your cycle, etc.  So if I wanted to have kids that might make it easier.  The other thing I was told is that if you polled doctors - 50 % might say Tamox and 50% might say Lupron.   I think they both do the same thing????  It makes me nervous because I most of the people I talk to say they take Tamox.  The other reason I was given was that there have been some studies that show the Tamox isn't as effective in HER2+++ women but I haven't read them.. I was just told that.  It is my understanding that the goal is to suppress the estrogen which the Lupron does.

As for side effects - menopausal effects - the main one is that I can not lose any weight and it is steadily increasing.  I joined a gym, worked out with a trainer, restricted my calorie intake, changed portions... nothing budges and I have stomach fat which has never been my area to gain.  I get hot flashed but they aren't miserable and my hair/nails seem really brittle.  Ugh!

Pathology from Bi-Lateral showed IDC (.4cm) in same breast as DCIS and nodes negative Dx 6/25/2008, IDC, <1cm, Stage I, 0/0 nodes, ER+/PR+, HER2+
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Jul 21, 2011 12:58PM peggy_j wrote:

CristlC, I don't know much about Lupron, but my understanding is that it's a different type of drug. Tamoxifen (etc) are considered Selective Estrogen Receptor Modulators (SERM)--they block the estrogen receptors on the cancer tumor cells. I believe Lupron is used to suppress the ovaries, which seems very different to me. 

Not sure if you've had a chance to search the BC.org website, but I found some info in this thread. (the Search key is at the top right-hand side) This thread is called "Pregnant after Lupron treatment??"

http://community.breastcancer.org/forum/27/topic/721148

Also, I've seen books in my library about having kids after cancer. I know some women take tamoxifen for 2 yrs, take a break to have kids, and then resume tamoxifen.  (I haven't read those books, but they might talk about other related issues as well) This isn't to say that Lupron isn't correct--just that I personally don't know anything about it. ;(   And don't forget, it's never wrong to consider a 2nd or 3rd opinion. Most insurance companies pay for those visits.

Dx 2/2011, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Jul 21, 2011 01:09PM Member_of_the_Club wrote:

Lupron suppresses the ovaries so they don't make estrogen.  Tamoxifen is a kind of fake estrogen that binds to cancer cells to trick them into thinking they have fuel, and blocks out the real estrogen.

Dx 9/30/2004, IDC, 3cm, Stage IIB, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Jul 21, 2011 09:51PM CristlC wrote:

Yes, Lupron completely suppresses the ovaries and there there is no cycle.

Pathology from Bi-Lateral showed IDC (.4cm) in same breast as DCIS and nodes negative Dx 6/25/2008, IDC, <1cm, Stage I, 0/0 nodes, ER+/PR+, HER2+
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Jul 23, 2011 10:42AM savedafrog wrote:

Thanks for the info. When did your  headaches start? I have been on tamoxifen for 3.5 years now and would like to remain on it for the full 5, but have just recently developed major headaches just the last month or so. I can handle the night sweats and the hot flashes  aren't as bad, but the headaches, which do go away with 600mg of motrin, are the worst SE. I stopped taking it for two days...no headaches, then took as usually with a full glass of water...major headache in less than two hours. I will be discussing this Monday morning with my onco doc, but just looking for any additional insight.

FROG Dx 4/1/2007, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Jul 23, 2011 10:51AM savedafrog wrote:

May I ask how long you were on tamoxifen and why you switched?

Iv'e been on tamoxifen for 3.5 years, no real problems, beside the night sweats and hot flashes and some weight gain. No, for the last month or so I get these major headaches. I din't even know that headaches were a side effect...must have missed that one LOLFoot in mouth

FROG Dx 4/1/2007, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Jul 23, 2011 10:59AM savedafrog wrote:

Hello sweetbean:

What are you currently taking? What's up with the having to bug doc to take the other. What are their responces, concerns or reason why you have to continue to bug them.? I'm getting ready to talk to my onco doc monday morning and want all the info i can get so I am prepared to battle.

I appreciate everyone's insight. Thanks

FROG Dx 4/1/2007, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Jul 26, 2011 09:56AM hiiamher wrote:

Fareston is an alternative to Tamoxifen.  I am also premenopausal and my onc switched me because of metabolism issues.  

Dx 4/22/2010, IDC, 4cm, Stage IV, 25/29 nodes, ER+/PR+, HER2-
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Jul 26, 2011 04:05PM NeyNey wrote:

Hi, new to this thread....started tamoxifen a week and a half ago.....already don't like the way it makes me feel.  Tired, moody, and not my usual self.  I could tell 2 days after being on it that I wasn't going to like the way it makes me feel.  Just finished 16 rounds of chemo and had better spirits then than now.  Any suggestions?

Chemo 2/7/2011 4 x DD E/C; 12x T Dx 11/15/2010, IDC, 1cm, Stage IIA, Grade 3, 1/11 nodes, ER+/PR+, HER2-
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Jul 26, 2011 04:20PM , edited Jul 26, 2011 04:36PM by leaf

This Post was deleted by leaf.
If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, Stage 0, ER+/PR- Hormonal Therapy 07/15/2006 Tamoxifen in pill form (brand names: Nolvadex, Apo-Tamox, Tamofen, Tamone, class: selective estrogen receptor modulator (SERM))
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Aug 2, 2011 06:11AM rubyredslippers wrote:

I was 38 when diagnosed, I refused tamoxifen. I've since read Dr John Lee's book What your Doctor May not tell you about Breast Cancer. I encourage you to read it and make your own decision.

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Aug 2, 2011 04:51PM dngdonnelly wrote:

Sweetbean - I asked my MO about this drug, and she said it's not normally used in the U.S. and is only approved for women with metastatic breast cancer. Dang!!

Gina Dx 5/4/2011, ILC, 1cm, Stage Ia, Grade 1, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 03/13/2012 Arimidex (chemical name: anastrozole, class: aromatase inhibitor) Surgery 12/06/2011 Reconstruction of my right breast: Free TRAM flap Surgery 06/21/2011 Mastectomy of one or both breasts: Mastectomy of my right breast
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Aug 2, 2011 05:15PM dngdonnelly wrote:

Rubyredslippers - you made the decision against Tamox before reading the book? What made you decide to go with chemo and against HT? I'm trying to find the book somewhere locally so I can go buy it or get it from our local library.

Gina Dx 5/4/2011, ILC, 1cm, Stage Ia, Grade 1, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 03/13/2012 Arimidex (chemical name: anastrozole, class: aromatase inhibitor) Surgery 12/06/2011 Reconstruction of my right breast: Free TRAM flap Surgery 06/21/2011 Mastectomy of one or both breasts: Mastectomy of my right breast
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Aug 2, 2011 06:00PM sweetbean wrote:

dngdonnelly,

that isn't true - it is approved for everyone.  it's just typically prescribed for metastatic women.  i found five studies (3 were on post-meno women and 2 were on pre-meno women) who were early stage.  Showed the same results/efficacy as Tamoxifen but with fewer side effects.  It is made by a European company, which is probably more the reason it isn't prescribed here more.  Tamox is by a US company, I believe. 

Dx 11/18/2010, ILC, 5cm, Grade 2, 2/15 nodes, ER+/PR+, HER2+

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