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Raloxifene (Evista)

haagr profile image
14 Replies

Good afternoon ladies,

I was diagnosed with estrogen positive DCIS in September, had a lumpectomy in October and completed radiation in February. I had an appointment today with my oncologist to discuss estrogen blocking medications.

I was expecting her to recommend an aromatase inhibitor and was surprised when she said that my risk of recurrence was less than the risk of their quality of life altering side effects. Instead she wanted me to consider Tamoxifen. But tamoxifen is contraindicated for other medical issues I have.

So she is recommending Raloxifene (Evista)

It is an estrogen modulator that decreases the risk of breast cancer in postmenopausal women. It also promotes bone strength and is used to treat osteoporosis.

Is anyone familiar with or taking this med to prevent estrogen receptor positive breast cancer?

Thanks in advance for any information to help me decide if I should begin taking Raloxifene.

R

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haagr
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14 Replies
RonnieDale profile image
RonnieDale

I am a 20 year estrogen receptor positive breast cancer survivor and have taken Evista (now the generic, raloxofene) from the beginning. At that time Tamoxifen was not indicated for pre-menopausal women.. A clinical trial studying the two drugs was ended early due to the success of the Evista.

I had no side effects from the Evista and was pleased when a bone scan last year showed that my results were just below normal! I am still taking it.

I don't think you would have anything to worry about by taking Evista. And now that a generic is available it is much less expensive.

Best of luck regardless of what you decide!

missa13 profile image
missa13 in reply to RonnieDale

RonnieDale , just saw your post after I wrote in. Thanks for replying :)

haagr profile image
haagr in reply to RonnieDale

Thanks so much for your reply RonnieDale. You are the only person I know of who has taken this med. glad to hear you didn't have side effects. How many years have u been/were you on it? I'll let u know when I make my decision.

R

RonnieDale profile image
RonnieDale in reply to haagr

I've been on it for 20 years. It's the only drug I've taken, and I'm happy to say I've had no recurrence and my bones are strong.

I hope it will do as well for you, should you decide to take it.

Ronnie

suggi profile image
suggi in reply to RonnieDale

I had DCIS and mastectomy in 2002. I had also been diagnosed with osteoporosis. My endochronologist had just put me on Evista and after my mastectomy the oncologist said Evista would help keep the cancer from coming back so it was a win, win. For me Evista has not really built bone but make my bones stronger as i fell down 17 steps in a plumbing store and broke NOTHING. Also I have not had a recurrance of BC. however, I was just diagnosed with Graves disease and the endo said they have not studied Evista for more than 5 years and it can cause stroke in elderly women. I am not sure what to do as I can not take the other osteo drugs and I don't want the BC back. Has anyone else been told Evista cn cause fatal strokes in the elderly? After all this time I have never had a blood clot or any other side effect from the medication and would like to continue against the endo advice.

haagr profile image
haagr in reply to suggi

Fatal strokes are a known side effect of Evista. I have decided not to take it. I'd rather chance a 5% risk of recurrence than risk a stroke that can end or destroy the quality of my life, especially since I don't have osteoporosis and have cardiovascular risk factors that place me at a higher risk for stroke.

Robin

missa13 profile image
missa13

Hi haagr-- I've done a bit of digging around online, and it's been a little hard to find other women talking about their experience with this particular drug. Raloxifene, like all drugs, may have side effects (breastcancer.org/treatment/....

This article by the Washington Post discusses some of the pluses and minuses to taking this drug as well: washingtonpost.com/national...

Hope you're able to find the info you need to feel confident about whatever you end up taking!

haagr profile image
haagr in reply to missa13

Thanks Missa.

R

RonnieDale profile image
RonnieDale in reply to missa13

Hi! That was an excellent article in the Washington Post. As I said, the medication has been beneficial to me and I am still on it. Most of the side effects are manageable, but personal and family history have to be considered. In twenty years I had forgotten the risk of blood clots, fortunately I've been fine. Thanks for sharing.

Ronnie

missa13 profile image
missa13 in reply to RonnieDale

Of course! So glad to hear you've had a good experience with it.

daf10 profile image
daf10

Back in 1999 a clinical trial called the Star Trial was done which tested Evista aginst Tamoxifen here are the results:

Primary Outcome Measures:

Incidence of invasive breast cancer; superiority of one of the therapies. [ Time Frame: Time from randomization to the occurance of invasive breast cancer. ]

Determine which of the following is true:

compared to tamoxifen, raloxifene significantly reduces the incidence rate of invasive breast cancer;

compared to raloxifene, tamoxifen significantly reduces the incidence rate of invasive breast cancer; or

the statistical superiority of one of the treatments cannot be demonstrated and the choice of therapy should be based on benefit/risk considerations.

haagr profile image
haagr

Thank you so much daf10. I'm going to obtain and read the entire study to help decide Raloxifene is the way to go for me. Will also read the manufacturer's prescribing information for doctors that will detail side effects and considerations specific to the drug. I'll post my decision once I've made it.

Thanks again,

R

1jet11 profile image
1jet11

Hi: I took Evista for more than 10 years after going through menopause. It was recommended by my breast specialist who I had been seeing yearly because of my tendency to have cysts. I just ( 2016) had my diagnosis of Invasive ductal carcinoma by this same surgeon and he suggested I stop the Evista and switched me to an aromatase inhibitor. I wonder if I would have had my breast cancer earlier if not for taking Evista. I never had a problem with the drug and so far seem to be doing fine with the aromatase inhibitor. It is a stronger anti estrogen drug as I understand it and many of my friends have suffered difficult side effects. Fingers crossed I will continue to be fine with taking it.

haagr profile image
haagr in reply to 1jet11

Thanks for your reply 1jet11

I'm happy to hear from someone who took Evista. Sorry to hear that it ultimately did not prevent BC for you.

Still on the fence about taking Evista. My oncologist clearly does not want me on an AI due to the risk vs benefits for me. Yet I have friends who didn't have a problem with their side effects.

She calculated my risk for recurrurence at 5%. Adding Evista will bring it down to 2-3%.

I just had a dexa scan and found that I have early osteopenia which Evista will help from progressing. I'll give my internist a call and discuss the whole picture with him. Though I love my surgeon and oncologist, I want to talk to someone who is caring for all of me, not just my breasts.

I'll keep you posted.

Thanks again

R

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