Raloxifene (Evista)

[haagr]

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 in NYC

[Surviver]

No I was given Tamoxifen and it's a nightmare the side effects are awful

[haagr in reply to Surviver]

Thanks for your response. Tamoxifen is not an option because it is absolutely contraindicated for me.

R in NYC

[Chrissie2]

Sorry I don't know anything about Elvista so cannot comment. After being being on a few other treatments which gave me terrible pain, I then went on to Tamoxifen and my pains disappeared and no other side effects. We are all so different and it is difficult to compare how you will cope with a particular treatment. It affects us all in different ways. If there are contraindications for you taking Tamoxifen it doesn't sound like a good idea. Good luck with your decision xx

[haagr in reply to Chrissie2]

Thanks for your reply. Taking Tamoxifen is not at all a consideration for me because some of the side effects would be potentially life threatening. My oncologist does not want me to take an aromatase inhibitor because mathmatically, the likelihood of side effects is far greater than my likelihood of a recurrence. So it seems my only treatment option would be Raloxiphene. She left the decision up to me as the risk reduction for a recurrence would only be 2%.

R in NYC

[Nixh]

Hi, glad your treatment has gone smoothly 😊

I've no have no experience with Raloxifene am also on Tamoxifen. I hated it to start with but think I was still experiencing the side effects from chemo. Have had a break from it recently due to having a couple of operations and since back on it, the side effects have been milder than before which is a relief. Raloxifene sounds to me very effective, promotion of bone strength is encouraging as i do worry about that.

Personally I'd give it a go, I'd give myself three months to see how I was with it. After that if it was unbearable I'd ask for an alternative.

Maybe have a look at the Macmillan website, their forum is also very helpful. Someone on there may have taken Raloxifen and can advise you on the effects etc..

Atb,

Nix x

[haagr in reply to Nixh]

Hi Nix. Thanks for taking the time to respond. I am in the process of reading some medical journals regarding the efficacy of Raloxifene. I am leaning towards giving it a try. My oncologist also says I can discontinue taking it if I develop inloletable side effects. I will definitely look into your suggestion regarding information on the Macmillan website.

R in NYC

[Louisejr]

Hi there

I had the same, lumpectomy in October, and completed my Radiotherapy at the end of November.

I am on the Zoladex injection which puts your ovaries to sleep plus Letrozole as an inhibitor.

The side effects for me are awful, so your option does sound better than the life adjusting side effects which I am experiencing. But as other comments, side effects do vary for all of us.

Let us know how you get on with Raloxiphene if you decide to go ahead with it.

Louise xxx

[haagr in reply to Louisejr]

I will definitely keep u updated on my decision.

R in NYC

[Jhnard]

Just came across your post from three years ago discussing a Evista. I was given an aromatase inhibitor (AI)- my reoccurrence was only 1.6%. The AI caused my current condition: osteoporosis. Went on Prolia, wasn’t told that once you start you cannot stop. If you have to stop, then you must go on a bisphosphonate, etc. or risk the chance of rebound fractures. So I stopped after 2 shots of that poison and told my Oncologist I want off of the AI and want to start with Evista which will replace both meds.

Hope you are doing well and was wondering after 3 years where are you in your journey? Are you on Evista? Any challenges? Thanks!

[haagr in reply to Jhnard]

Thanks for replying to my post. At the time I wrote it, I was deciding if I should go on estrogen blocking hormone therapy. I decided to decline treatment. My medical oncologist said she was concerned about my decision. My surgeon said she understood. I didn’t feel the risk vs. benefit was in my personal best interest. September will be 4 years since my diagnosis. So far so good. My surgeon said the greatest risk of recurrence is in the first three years. I’m living a full active life and have never regretted my decision.

R in NYC

[Jennymary]

I've come across your post, I was on Tamoxifen, but last year was diagnosed with osteoporosis in my spine, hospital advised me, via GP, to take Alendronic Acid which I've refused due to side effects, I saw the consultant in February this year and he's switched me from Tamoxifen to Raloxifene as that will help strengthen my spine, I have another bone scan in 2 yrs so I won't know until then if it's helped