Have to choose between Tamoxifen and Raloxifene

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CBrown107
CBrown107 Member Posts: 53

Just met with an oncologist about my high risk for breast cancer after a surgical biopsy where ADH and ALH were discovered (other risk factors included). He wants me on something to decrease risk and presented Tamoxifen and Raloxifene. I'd love to hear from those of you who have taken one or the other. The side effects are a concern since I've had to quit using HRT and am having horrible hot flashes already. (Had both ovaries removed 2005 at age 50 and was catapulted into menopause overnight!) I'm really interested in hearing what side effects people experienced and how they handled them. Thanks!

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2013

    Hello and welcome CBrown107 - just wanted to stop by and say you might want to check out the Hormonal Therapy - Before, During, and After forum, and even post your question there. Most of the ladies are taking HT due to a BC diagnosis, but I imagine that the SE are the same. I have been on Tamoxifen for just a few month, with minimal SEs. In hindsight I wish some doc had told me about Tamoxifen when I was doing all the high risk screening years ago. Best of luck to you. Let me know if I can help!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    I've actualy taken both tamoxifen (for 5 years) and now evista (for about 4 years) and I tolerate both of them pretty well overall. I was diagnosed almost 10 years ago ( at age 46) with LCIS and my risk is further elevated by my mom's bc (she had ILC many years ago and is a survivor of over 25 years). I did develope large ovarian cysts which ruptured, necessitating a TAH/BSO, so I also had immediate surgical menopause. The first year was rough with the hot flashes and the night sweats. Things did level off over time, although I still have them to a certain degree, over 8 years later. But I still have them even when I'm off the meds (taking a break this summer as it's already hot enough!), so my gyn thinks I would've even if I never took tamox or evista.  I didn't notice a big difference in the 2 meds; I also had a bit of insomnia and some overall achiness with both, but nothing I couldn't deal with. Considering effexor, but not sure I want to trade my SEs for other SEs.

    Anne

  • CBrown107
    CBrown107 Member Posts: 53
    edited July 2013

    Thanks to you both for your input. I have looked around on the Hormonal Therapy forum, so thanks for that idea, Farmerlucydaisy. Thanks, awb, for your comments. I haven't seen many who have been on Evista. I'm still so new on the discussion boards, though, so I haven't seen a lot yet! I'll keep looking. There is SO much good information!

  • leaf
    leaf Member Posts: 8,188
    edited July 2013

    Although its rather tedious going through the data, the most information I've found in one place is from the package insert (in this case Mylan brand). It indeed suggests that in the clinical studies, women with different severities of breast cancer did have some different side effects.

    http://www.drugs.com/pro/tamoxifen.html

    This may be due to things such as when tamoxifen is used in people with metastatic disease, they often have been through regimens that include chemotherapy (unless they were initially diagnosed with metastatic disease), and have often had different experiences. 

    The hormonal forum is good if you are trying to find out what the personal experience of people with side effect X are like.  However, it is not a good source of information if you are trying to find out the incidence of side effects of people who take hormonals.  People who are more anxious and/or have more severe side effects are more likely to post in the hormonal forum. People who don't have any issues with their anti-hormonal are not likely to post about their lack of issues.

    I, like awb, had tamoxifen for 5 years with LCIS, but I haven't taken any Evista. (Unlike awb, I have a weak family history.)  My main side effects were hot flashes (really warm flashes), but I was peri-menopausal at the time, so they may have been due to that.  I also had endometrial polyps every ~1.5 years, all were benign.  But I also had these polyps before I started tamoxifen.  So I will never know if my side effects were due to tamoxifen or not.

  • CBrown107
    CBrown107 Member Posts: 53
    edited July 2013

    I have just discovered that I made a mistake with the meds that I must choose from!  It is between Tamoxifen and Arimidex not Tamoxifen and Raloxifene!  So that changes everything, I guess.  I'm wondering if I need to start a new topic!  

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    are you  sure?  Arimidex is generally used with invasive bc; tamox and evista are given for high risk prevention.  (so if you have ADH/ADH (and not any invasive bc), it sounds like the recommendation would be for either tamox or evista.   (unless I'm missing something here).

    anne

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    maybe they meant aromasin ? (instead of arimidex?)  look at the post from MelissaDallas--they are now recommending aromasin for high risk prevention in addition to tamox and evista.

    anne

  • CBrown107
    CBrown107 Member Posts: 53
    edited July 2013

    I'll check it out.  Thanks!

  • CBrown107
    CBrown107 Member Posts: 53
    edited July 2013

    awb, thanks.  I read the article, and it certainly sounds like that might be the right one.  

  • KJohnson3
    KJohnson3 Member Posts: 20
    edited July 2013

    CBrown107, just like you, I was diagnosed in June, 2013 as having ADH and ALH.  I have been given the choice of three different treatments:  tamoxifen, raloxifene (Evista) or aromatase inhibitors (Arimidex or Aromasin).

    According to the literature I was given, AI has already been used to help prevent BC recurrences and is now being studied as BC chemopreventive agents.  The reason I am swaying toward AI is the listed side effects.  Tamoxifen and raloxifene list blood clots and uterine cancer.  AI's side effects seem to be joint pain and bone loss.

    I would be interested in hearing what side effects people have incurred.  I need to make this decision within a few days...

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited July 2013

    KJohnson - you might want to ask your doc about some of the other side effects of AIs - they take all estrogen out of the body, and resulting side effects include bone loss (many women on this board have to take anti-osteoporosis meds) and other pretty heavy-duty things.

    Please read the hormonals board before you make these types of decisions

  • CBrown107
    CBrown107 Member Posts: 53
    edited July 2013

    KJohnson3 and ICanDoThis, thanks for your replies. Just got off the phone with my GYN doc who is recommending the Aromatase Inhibitor rather than Tamoxifen. He said he wouldn't even consider Evista. I had just about resigned myself to Tamoxifen, but because of the risk of uterine cancer he prefers I use the other. Now I'm feeling awful all over again! He said he can't follow me more closely for uterine cancer if I'm on Tamoxifen because insurance doesn't cover that. They only follow up if you have bleeding. I'm going to have to read up on both again and I guess talk to the oncologist again, who thinks I've already started Tamoxifen. I wish the choice was easier. I'm tired of thinking about it. Thanks for all the input; it's nice not to be the only one trying to figure this out!

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