Raloxifine rather than Tam or AI to prevent recurrence?

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Boobytrap
Boobytrap Member Posts: 53
edited July 2015 in Hormonal Therapy - Before, During, and After

Hi all,

OK. Ive had bilateral aggressive breast cancers, triple postive. I had diagnosis at 43 years old and now 31/2 years since diagnosis currently NED. Had chemo which put me straight into chemopause and watched my skin become more and more crinkly. I know it sounds trivial in the great scheme of things, but its a big deal to me. I have been reading that raloxifene actually has a positive effect on skin, akin to HRT and can undo some of the skin ageing brought on by the menopause. Im discussing with my oncologists whether to switch to this from Tamoxifen and they are going to discuss it as a team, but it is clearly not something they are comfortable with. Tamoxifen was OK for me. I stopped it 6 weeks ago just to see if that was what was making me so fatigued, but can't say I feel any better. So its not really anything against tamoxifen its that raloxifine could actually deliver most of the cancer prevention and all the bone health benefits of tamoxifen with the added bonus of maybe rejuvenating me a little. Or at least letting me live in hope that may happen. My risk of recurrence without tamoxifen is about 6.5% over 10 years and death is about 3 %. Tamoxifen would apparently halve that. However, surely I must have had some benefit from the 2.5 years I have taken it, so I should lie somewhere between those stats of not taking it and completing the 5 years? I had to really drill down the oncologist to get absolute figures as they make it sound such a massive deal to take tamoxifen yet when questioned admit its a small percentage difference in outcome.

So, I know raloxifene is prescribed for breast cancer prevention but not recurrence prevention in the UK anyway. Have any of you been prescribed it for prevention, particularly in place of tamoxifen or an AI?


Sorry for my ramblings. I'm trying to make this decision myself and if my oncologists don't agree to it, but I think raloxifine is right for me, I may purchase it online. BTW I do have osteopenia, so would definitely take tamoxifen or raloxifine.


Thanks

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2015

    as far as I know, raloxifene (evista) is to help prevent an initial invasive breast cancer in high risk women; NOT to prevent recurrence of bc in someone that has already had bc in the past. (I take it to prevent invasive bc, as I am high risk due to LCIS and family history of bc (mom had ILC). I initially took tamox for the full 5 years, and now I have been on evista for 5-6 years. I continue to do high risk surveillance of alternating mammos and MRIs. so far, not further biopsies or lumpectomies. so I guess the meds are doing what they are supposed to!

    anne

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  • Boobytrap
    Boobytrap Member Posts: 53
    edited June 2015

    Thanks Anne, Yep, I was aware of the use to prevent a first occurrence rather than recurrence. But I'm wondering whether it could also be used for the latter since it clearly has some breast cancer prevention activity. In prophylaxis it is almost as effective as tamoxifen, but I believe not quite as good for preventing non invasive tumours. However, as I've had bilateral mastectomy, Im more concerned with distant metastasis. The SE profile is generally better too (less risk endometrial cancer).

    Im glad to hear you're doing so well. Thanks for posting.

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  • Fiaranch1
    Fiaranch1 Member Posts: 328
    edited June 2015

    Boobytrap,

    I was on raloxifine for 8 years for prevention. Quite simply it failed me and I was diagnosed with a second breast cancer a year after stopping it . Not to say it won't work for you . Just providing you with my experience.

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  • peggy_j
    peggy_j Member Posts: 1,700
    edited July 2015

    Booby_trap, my MO said there isn't enough data (or clinical trials) for them to recommend raloxfine as a substitute for tamoxifen. Both drugs are SERMs so some of their actions are similar but they aren't identical. FWIW, the little I investigated raloxifine, I never read that it is better on your skin, so it may not be true for all patients. (?) I wonder if there are other options for improved skin (I should be looking into this too). In the Complementary forum, there once was a thread where members discussed beauty products. One person swears by coconut oil--the jar of white stuff you buy in the grocery store. Maybe you can try these things while you're doing more research??? Good luck!

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  • Boobytrap
    Boobytrap Member Posts: 53
    edited July 2015

    hiya guys, thanks for your replies. Fiarqnchi 1 I actually don't see 8 years as a raloxifene failure. Many people, including my mum relapse quicker even on the AIs. Also you were off it a year before your recurrence. however, I can totally understand your feelings of being let down by it. PeggyJ, thanks for that info. WRT the skin benefits, I've done extensive googling (I get a bit obsessed like that😉) and there is a definite HRT like benefit on the skin. It stimulates the fibroblasts and collagen production. From what I can make out raloxifene is about 76% as effective as tamoxifen but not so good at preventing DCIS. However I'm more concerned with an invasive recurrence as I've had bilateral mastectomy anyway. I have tried cocnut oil in the past and not sure it made much difference. I think I'll just have Toby a bucket of retin A and slather myself in that!!

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