On Aromasin for high risk instead of to prevent recurrence?

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CBrown107
CBrown107 Member Posts: 53
edited June 2014 in High Risk for Breast Cancer

Just started Aromasin yesterday. I wonder how many of you out there are on it to reduce risk rather than to prevent recurrence? Most everyone on the hormonal treatment topics have already been diagnosed with bc rather than just being high risk. I'm interested in how others made their decisions, weighing the risks with the benefits. Also interested in what side effects and at what point in the therapy they've started.

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  • Jld03
    Jld03 Member Posts: 22
    edited August 2013

    After a surgical biopsy showed "ADH approaching DCIS," I started Aromasin on June 29th for risk reduction. The side effects for me started pretty much right away. Mostly aches and pains in my muscles and joints, especially my ankles and legs, coupled with a general feeling of weakness in both my arms and legs. Hot flashes, headaches, and difficulty concentrating round everything out. Lately, I've started taking the med at supper, rather than breakfast, in hopes the worst of the aches will happen while I sleep. It's too soon to tell if it's helping yet, but I have hope that I'll get some relief. My oncologist assures me that this is as bad as the side effects will get.



    It was a difficult decision, especially considering the potential of Aromasin to weaken my bones, but my risk was high enough that I was willing to give it a try.



    How about you? How did you make your decision? Have you noticed any side effects yet?

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited August 2013

    I've been offered Aromasin for LCIS but I'm still thinking about it. I can't take Tamox or Evista because of a prior PE.

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  • CBrown107
    CBrown107 Member Posts: 53
    edited August 2013

    I am on my 7th day so far. Because I was on HRT for 8 years, and had to stop taking it June 13, I am in the throes of symptoms of menopause. So for some of them it's hard to tell if they would be increasing in intensity anyway, or if Aromasin is making them worse. I am having aches in my wrists and hands, but am waiting to see if it is an unrelated temporary event or a side effect. I've heard that some don't develop SEs until they are a month or so into the process. Of course, you, Jld03, are almost 2 months in. Are you having the same effects now that you had right away? I have noticed more severe vaginal dryness, which I am already working on with various treatments, but I think I need to find something else, too. That was true even while in HRT, then got worse when I quit, and now even worse. So I guess I'll take it a day at a time and see what else happens! How are you dealing with your SEs? Are you able to still do everything you need to do?



    Good luck with your decision, MelissaDallas!

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  • CBrown107
    CBrown107 Member Posts: 53
    edited August 2013

    I am concerned about the bone issue, too. I guess that is my biggest concern. I am having a bone scan in Sept. right before seeing the oncologist again. Even if the scan is OK for now, I'm worried about what the Aromasin will do over a 5 year period.

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  • Jld03
    Jld03 Member Posts: 22
    edited August 2013

    Oh, hugs on the menopause symptoms. I never took HRT so I went through that three years ago. one reason i was so dismayed to get the hot flashes back again, and the mood swings. Yuck. I am definitely having pain in my wrists and hands, which go numb frequently throughout the day--and at night as well. My MO said that by the ninety day mark, the SEs should start to get better, mostly because the brain gets used to the level of pain and starts to ignore it. If you can make it to the ninety day mark, he said, you should be able to do the five years. I was really surprised how quickly the SEs started. I foolishly thought it would take a couple of months before they kicked in. I take Tylenol or Ibuprofen to help me get everyone done. However, I have noticed over the last couple days that the pain does seem to be getting a little better. Not gone, but definitely better. Now if the mood swings would go with them...



    I am noticing the dryness issue, as well, but stupidly didn't put two and two together. What treatments or supplements are you using to help with that?



    As for supplements, i'm taking 1800 mg CA and 1000 mg D3, a multi vitamin and flax seed oil. My bone density was normal going into this and I am praying every day that it stays normal throughout.



    I also wish you good luck with your decision, MelissaDallas.

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  • Momcat1962
    Momcat1962 Member Posts: 665
    edited August 2013

    I have too many other issues so I can't take any if the preventative meds. I am looking into holistic preventatives.

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  • CBrown107
    CBrown107 Member Posts: 53
    edited August 2013

    I started menopause overnight after having my ovaries removed in 2005, and took HRT from then until this past June.  It was wonderful getting relief with the HRT, but it is a rude awakening being without it. The worse symptoms have been hot flashes, insomnia and the dryness.  The Aromasin has definitely made the dryness worse, but the other issues could be getting worse all on their own, or maybe are related.  Who knows? (I've about decided the hot flashes are worse. . . I'm sweating more with them too. Fun!) I've been using Vagifem which some doctors don't want their high risk patients to use.  My oncologist said it is a minimal amount of estradiol and he appreciated the quality of life issue that it represents.  It isn't enough, though, so I've been using Luvena which you can get at any drug store.  It comes in prefilled applicators.  That is all I've been doing, but it isn't enough anymore, so I'm going to hunt down something else. I've used Replens before too.

    I'm taking 1000 mg Calcium, and that supplement has 600 IU Vitamin D3 included.  I take another supplement of 1000 IU D3. I haven't even talked about supplements with my doctor, so I guess if I need to do something else I'll find out!

    That's great that your pain has been better for a couple of days. . . maybe it is a new trend! Are the mood swings very bad? Hang in there!

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  • CBrown107
    CBrown107 Member Posts: 53
    edited August 2013

    Jld03, have you been in the Hormonal Therapy - Before, during and After forum?  There is a thread called "Life on Aromasin."  Most of the women have been diagnosed with bc and have been through chemo, radiation, surgery, etc.  But you can get an idea of the varied responses to Aromasin on that thread. 

    Momcat, have you had any success finding something holistic to try?  I know there is a forum on alternative medicine, but it may be mostly about treating cancer rather than preventing it. 

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  • Momcat1962
    Momcat1962 Member Posts: 665
    edited August 2013

    No, I am just looking around...right now as a matter of fact. I will post what I found for anyone who might be interested.

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  • CBrown107
    CBrown107 Member Posts: 53
    edited August 2013

    Good! I'd like to see what you find out.

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  • Jld03
    Jld03 Member Posts: 22
    edited August 2013

    As would I.



    I'm slowly making my way through the "life on Aromasin" thread. A lot of useful information there. Thnx.

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  • CBrown107
    CBrown107 Member Posts: 53
    edited August 2013

    Jld03, are your symptoms still better, or was it a fluke? Hope you are feeling OK.

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  • Jld03
    Jld03 Member Posts: 22
    edited September 2013

    My SE's are definitely getting better. I still get achy, headaches, mood swings and numbness in my hands, but it's definitely better. Tolerable.



    How about you? I hope you are doing well.

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