Tamoxifen/Evista vs AI (Arimidex/Aromasin)

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KJohnson3
KJohnson3 Member Posts: 20

In June, 2013 I had three biopsys.  I had surgery for a more extensive biopsy and because of the findings, it was determined that I had ADH & ALH and was at greater risk of breast cancer.  

I have been advised to go on chemoprevention drugs to reduce this risk.  I was advised that I would need to be on the drug for five (5) years.  

Now my problem.  I was presented with the option of three drugs:

tamofixin -test results: 50% lower risk of invasive breast cancer

            possible side effects: blood clots, uterine cancer

raloxifene (Evista) - test results: 35% lower risk of invasive breast cancer

           possible side effects:  blood clots, uterine cancer

aromatase inhibitors (Arimidex or Aromasin) - test results: 65% lower risk of breast cancer

           possible side effects:  joint pain, bone loss

I'm leaning toward an aromatase inhibitor, because the side effects seem to be something i could have more control in handling.  Has anyone made the above choice and what has been your experience?  Any additional side effects of which I should be aware?

This is all very new to me.  I'm 66 and have been healthy up until this.  I could use some insight on what lies ahead...

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited July 2013

    Hi KJohnson,

    We're sure you'll be getting some helpful advice from the other members here shortly, but we wanted to share with you a recent study that Breastcancer.org reported on that may provide some insight for you: New ASCO Guidelines Recommend Aromisin to Lower Risk in High-Risk Postmenopausal Women.

    We hope this helps!

    --The Mods

  • savgigi
    savgigi Member Posts: 376
    edited July 2013

    I was faced with a decision between Tamoxifen and an aromatase inhibitor. I chose Aromasin because the the side effects of Tamoxifen. I have a personal high risk of heart attack, stroke, and DVT and did not want to add additional risk with the Tamoxifen. I also had a baseline endometrial biopsy just on the possibility of taking Tamoxifen and did not want to face the fear of endometrial cancer in addition to breast cancer reccurrence. So far it is going ok. Good luck with your decision.

  • KJohnson3
    KJohnson3 Member Posts: 20
    edited July 2013

    Moderators, Thank you for the information.  Would you take from this article that Aromasin is better than the other AI's (anastrozole or letrozole)?  My doctor did mention Aromasin, but my insurance doesn't cover it.  It would cost apx $100 for the generic exemestane.  It does, however, fully cover anastrozole.

  • KJohnson3
    KJohnson3 Member Posts: 20
    edited July 2013

    savgigi,  Thank you for responding.  Have you experienced any side effects with the Aromasin? (Vanity speaking:  have you experienced any hair loss, dry skin, etc?).  Were you offered any other AI, or just Aromasin?  My insurance doesn't seem to pay for Aromasin, but it does pay for the generic anastrozole. 

  • barrieb
    barrieb Member Posts: 1
    edited July 2013

    I was diagnosed with stage 2 breast cancer at 58.  I had been taking HRTs for 7 years prior.  After my diagnosis I immediately quit taking HRTs.  After surgery, chemo and radiation I took Arimidex for 3 years.  I have two loves in life besides my family and husband - working out and playing golf.  I worked out daily and continued to lose muscle mass for the 3 years I was on Arimidex.  My sister finally told me I looked frail.  After I stopped taking Arimidex my muscle mass returned after 1 1/2 years.  I asked my Oncologist if anyone had done a study to see if less time worked.  He said good luck trying to find anyone to fund that study because they are funded by the drug companies.  I have been cancer free for 6 years and counting.  Each decision is personal and must be weighted by the individual. 

  • savgigi
    savgigi Member Posts: 376
    edited July 2013

    Hi, K. It took about 4-6 weeks for the SEs to show up. It started with hot flashes - no more in number or intensity than with menopause. I had to change some morning routines around as I found the hot flashes would hit about an hour an a half after taking my med and that was about the same time as I use using my hair dryer and hot rollers - I was literally dripping sweat down my back :). But when I changed the order of things, it became much more manageable.

    I have not had any hair lost - I have noticed my hair is a little drier and maybe my skin, too, but not so much I will do anything about it. The biggest SEs for me are joint aches/stiffness and insomnia. The sleep problems come and go and I know are made worse by the fact that my job involves travel. I live on the East coast and work on the West coast. I do not handle the time change nearly as well as I did.

    I wake up with all my limbs aching - not terribly but enough to really irritate me. It takes a few minutes to get going. I was having trouble with pain in my knees every time I stood up. Aleve twice a day helps with that, but I still have some stiffness, especially with stairs.

    All in all - nothing terrible - but put all together and I definitely notice the difference in my quality of life. My sister says I am snarky and the project manager for the client I work with calls me Sybil because I am hot and cold all the time and my mood changes at the drop of a hat. I am fine with the nickname - I think it is funny. I don't like being PO'd all the time but it is what it is.

    My MO recommended tamoxifen because that is what the FDA stays is standard for DCIS. But as I stated above, I turned that down. He offered Aromasin because (if I remember correctly) it is the only AI that has been studied for DCIS and is the newest one. But he was quick to say he is willing to prescribe any of them. I get the generic exemestane and my copay for it is about $100/3 mo.

    P.S. - good luck with your decision.

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

    KJ---I was diagnosed with LCIS ( a step further along the bc spectrum) almost 10 years ago and my risk is further elevated by family history of bc (mom had ILC). I took tamoxifen for 5 years and now have been on evista for about 4 years.   I do have hot flashes, insomnia, and achiness, but I had a total hysterectomy 8 years ago, so it's difficult to tease out exactly what is causing what now (the meds, or the lack of estrogen from no ovaries! I think it's probably a little of both) I'm sure I would've had similar SEs from natural menopause, just not as intense or as long. So overall, I think I tolerate both meds pretty well considering, and even though they're difficult at times, I wouldn't want to deal with the joint pain/stiffness/bone loss from the AIs. (I'm a PT, and those issues would greatly impact my ability to do my job, among other things).  Keep in mind as you as researching and making decisions, the incidences of the blood clots and the endometrial cancer are very very rare, <1% chance. (and they can monitor you yearly with transvaginal US and you can take baby aspirin daily to reduce the risk of the endometrial ca.)

    anne 

  • KJohnson3
    KJohnson3 Member Posts: 20
    edited July 2013

    savgigi--Thanks for responding.  Did you ever try any other AI except Aromasin?  Like you, my insurance does not completely cover exemestane.  They do, however, cover anastrozole (Arimidex).  I'm wondering if there is much difference in the side effects and if the drugs are comparable.  Were you offered a choice of AI drugs?  If so, why did you choose Aromasin?

    Well, I never really experienced side effects with menopause - looks like I might get a second shot at them!

  • KJohnson3
    KJohnson3 Member Posts: 20
    edited July 2013

    awb--The point about the side effects of taxo is well made.  My daughter is a Family Doctor.  She recommends AI.  Therefore, I may start on the AI route and see how that works.  It looks like several people have taken AI drugs and then changed over to the other after two or three years.  

    I know that insomnia is considered a minor SE, but I've found that I REALLY don't function well without 8-9 hours of sleep!  I would hate to get hooked on Sleep-Ez because of my 'drug of choice'!

  • savgigi
    savgigi Member Posts: 376
    edited July 2013

    K, I have only been on Aromasin about 3 months, so I have not tried anything else. If SEs become intolerable, I will switch with no problem.

  • Rosesark53
    Rosesark53 Member Posts: 53
    edited August 2013

    Hi, I also had the choice of the same drugs due to mastectomy left breast estrogen positive. I chose not to take tamoxifen, as I have had blood clots and so just didnt want to take the chance. I was put on arimidex. 4 years now. It gave me a few side effects, but it has softened my bones. The doc wants to put me on fosamax or actonel, which I was unable to tolerate. My mom took tamoxifen for 5 years. Her cancer hasnt come back so far. You have to weigh the risk against the good. I am trying to get my rt breast removed now as I regret not getting bilateral, but thats just my decision. Just try one and see how you do, if it bothers you maybe he can adjust the dose or it might be ok for you. I know you will get help here. I have and im so thankful I found this site

    jant to mention it gave me hot flashes and some mood swings along with a little eyelash loss.
  • CBrown107
    CBrown107 Member Posts: 53
    edited August 2013

    KJohnson3, did you make a final decision?  Just wondering if you started on an AI.  I have just had my third day of Aromosin (Exemestane) after waiting for a month for my gynecologist and oncologist to talk about which drug I should take (Tamoxifen or an AI).  Originally the onc recommended Tamox, but my gyn wanted me to take an AI instead.  So they agreed on Exemestane.  I wasn't thrilled about either choice, but I'm hoping I'll be one of the lucky ones who doesn't have too many issues with side effects.  We'll see!  I guess it  will take a while before I'll know about that. I hear it usually takes a month or more to see how it will go. Hope your decision has been made and you are forging ahead in your treatment!

  • KJohnson3
    KJohnson3 Member Posts: 20
    edited August 2013

    CBrown107, I decided to go with Exemestane.  I felt the potential side effects were more controllable.  I am curious.  Does your health ins. cover Exemestane?  I found that mine only covered a portion - my cost would be $95./month.  I did find a place called PharmStore.com which provides it for about half.   Has anyone heard anything negative about PharmStore.com?

    Anyway, I'm taking the pill at Noon and have not noticed any side effects so far.  I started on Aug. 20, but I'm not sure how long it takes to see side effects.  How are you doing?  When did you start?  I look at it this way - I ONLY HAVE 259 WEEKS TO GO!!

  • CBrown107
    CBrown107 Member Posts: 53
    edited August 2013

    Hi KJohnson3! I started Exemestane Aug. 17, so I'm just a few days ahead of you! I have noticed some hand pain, but I'm not totally sure it is medicine related.  I guess time will tell.  I do seem to be having more hot flashes (was already having them after giving up my HRT in June), but with more sweating. Vaginal dryness is worse, and I'm trying to find an adequate solution for that.  At first I had nausea with hot flashes,but that seems to have diminished.   If this is as bad as it gets I think I can make it!  We'll see as time goes on.  Glad you haven't had SEs yet. . . . My cost for a month's supply is $5.00, so I guess it's covered. I have never heard of PharmStore.com, but half the cost sounds great! Hey - I like your countdown! Seems more manageable in weeks!!

  • KJohnson3
    KJohnson3 Member Posts: 20
    edited August 2013

    Hello CBrown107.  Thank you for responding.  I, too, have some hand pain.  Especially first thing in the morning.  But I was having a little stiffness prior to starting the medication.  Fortunately, I havn't had any hot flashes.  But I didn't have any during menopause either.   I've found that if I eat something when I take the pill at Noon, I don't have the nausea.  I have heard that some SE don't really kick in until after the first month.  I would appreciate hearing from you as you continue your journey.  

    ONLY 258 WEEKS TO GO (more or less)!  Yes, I find I am goal oriented.  Five years sounds SO long.  I decided to go with a weekly countdown.  I look forward to Mondays now because then I can reduce the number by one!

    .

  • CBrown107
    CBrown107 Member Posts: 53
    edited September 2013

    KJohnson3, I'd like to hear from you , too, as you get further along!

  • Kat-ski
    Kat-ski Member Posts: 212
    edited September 2013

    Hi!  Just thought I would put my two-cents on here.  This is my second time around with this beast!  2005 just DCIS in left breast but did all the treatments and 5 years of tamoxifen.  Not too many side effects with that except weight gain. 

    Now 7 years later, ILC in right breast so I had them both removed, finished chemo, rads and am taking Arimidex.  I start Arm. in May.  About month after, hip pain for a couple of days.  So instead of taking it in the a.m., I started in the p.m.  Have been experiencing more hip pain(once a month for a week) now.  All the MO did was give me norco to take.  Now, I am back to a.m. taking this little white pill.  This month Aug. the hip pain has been on my backside all the way down to my leg(right side only).  I see the MO next week and I guess I will have to discuss this treatment.  MO's office seems to think adding more pills is the answer to keep taking Arimidex while I keep on questioning about my liver.  I just started taking it in the mornings today and hope to cut out this stiff type pain.  Let me know your thoughts.  Thanks

  • KJohnson3
    KJohnson3 Member Posts: 20
    edited September 2013

    Hi, Aspinner.  I have found that going for a massage once a week (I go to a massage school) has helped with my normal aches and pains and will hopefully relieve any SE in the coming months.  I am taking exemestane (the generic of Aromasin).  As much as I hate exercise, I have a feeling that that is one of the ways to help relieve the aches.  Yoga is a great help, too.

  • Jld03
    Jld03 Member Posts: 22
    edited September 2013

    I've been on exemestane just over two months. My SE's started pretty much right away, which surprised me, as I thought they would come on a little more slowly. Hot flashes, nausea, headaches, numb fingers (really badly) very sore arms and legs, and a feeling of general weakness. I'm sure I missed a few, BUT they are definitely getting better. Less intense, unless I have to sit for a long time. Then I am very stiff and achy as I start moving around again. Now it's mostly the numbness in my fingers and pain in my right ankle. My MO said that by ninety days, the body and brain adjusts and the SE's should be more tolerable.



    At first I didn't think I would be able to tolerate. It Now I think I'll be ok. I used to take the pill in the morning, but now i take it either at supper, or just before bed, depending on the night.



    I just went for my first massage ever. It was wonderful, and I feel as if it brought some relief to the numbness in my fingers. I'm not getting it as often, and it's not as intense.



    Just realized i forgot something. As Savgigi mentioned above, I do experience mood swings, like the pre-period crankiness I used to get before menopause, though it's manageable so far.

  • KJohnson3
    KJohnson3 Member Posts: 20
    edited September 2013

    Jid03, Thank you for your message.   I have found the stiffness and numbness in my fingers to be annoying, but not intolerable.  When I first wake, the tendens in my feet are stiff.  I find if I rotate my ankles before I get out of bed, they seem to loosen.  The only other SE I seem to have is dreams.  They are usually bizarre and don't seem to go away when I wake up and turn over!  I also note that I'm getting less sleep - usually 6-7 hours instead of 8-9. 

    Glad you enjoyed your massage!  As I mentioned, I go to a massage school (found it in the phone book!).  If you tell your masseuse about any areas that are troubling you, they are usually great about concentrating on those spots.  For those who are concerned about the cost - at the school it costs me apx $25/55 minute massage and, in my mind, I look at it as therapy.  It definitely is worth the price.

  • Jld03
    Jld03 Member Posts: 22
    edited September 2013

    Hah! I forgot about the dreams! When I first started the med, I had very wild, very intense dreams. Even mentioned it to a friend of mine who is taking a different AI, to see if she was having the same strange se from her medication, but she wasnt. Thankfully, they, too, have diminished, though I am not sleeping well, waking up every couple of hours, and having more daytime fatigue than normal. Then nine at night rolls around and I can't keep my eyes open.

  • KJohnson3
    KJohnson3 Member Posts: 20
    edited September 2013

    jld03, So glad you understand my dreams!  (Sorry you are having them though...).  How long before they started to subside?  I wake up at 5am, turn over...and over...and over, and finally go back to sleep around 7am.  Just in time to get up at 8am!  I start getting sleepy by 9 or 9:30pm, but make myself stay up until 10 or 10:30.

    Please keep me in the loop.  I am finding I really need the confirmation that what I'm going through is 'normal'.

    Keep smiling!

  • Jld03
    Jld03 Member Posts: 22
    edited September 2013

    For me, the wild dreams did not last long, no more than a couple of weeks. It was just really strange.



    Hope yours slip away just as quickly.

  • proudtospin
    proudtospin Member Posts: 5,972
    edited September 2013

    I am getting near the end of my aromasin time, hoping to end in Dec at the 5 year point.

    I started working with a trainer at my gym whom is referred to as "Tim the cancer guy" as he is working on his PHD in physical therapy with an emphasis on cancer survivors!  Who knew there was such a thing?  Anyway, I walked in a few times, limping and thinking I could not to the session with him.  He had me lie on a massage tabe and he stretched my dang leg muscles........I could not believe it but I stood up, no pain!  Now I do the stretches myself, everytime I go to the gym and have abolutely no joint or muscle pains.

    Stretch my friends!

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

    Proud to spin - Would it be possible for you to describe the stretching you do?? Thanks in advance!

  • Jld03
    Jld03 Member Posts: 22
    edited September 2013

    Hi Proud to spin,



    I, too, would be interested in those stretches. Am considering yoga for the first time in my life, but I've always been a bit uncoordinated and at fifty three I worry that I'm too old and inflexible to do the movements.



    The massage I had last week really helped, and I am going to be seeking out a massage school, as KJohnson3 suggested, because I'd really like to keep that up, but at $ 95.00 my fifty minute session was a real splurge.



    Congrats on nearing the end of your aromasin time. Did you have the joint aches and pains all the way through?

  • GrammyR
    GrammyR Member Posts: 702
    edited September 2013

    barrieb- Just in response from a post 5 year out person. I had taken HRT for over 12 years prior.  I made it to almost 7 years before return of ER+BC a couple of months ago. I had thouht I had this thing beat. I took if I recall right Arimedex to start with then switched to Aromasin then finally Femara. They all gave e crippling joint and bone pain and after 18 months stopped them and was advised to go on Tamoxifen. Two weeks of continual nausea I quit taking that and decided to take my chances. So I advise staying on as long as you all possibly can. I am having loss of appetite now which I blame Tamoxifen but since am getting RADS too will have to wait and see after I get done. I had only ever gained weight on all the others HB. I too was age 58 at time of Dx and a very active RN. Had to give up work at age 60 d/t complications of chemo. So some loss of muscle is bound to happen by this age so just feeling good and being w/out pain is my main goal right now.

  • KJohnson3
    KJohnson3 Member Posts: 20
    edited September 2013

    Hi Jld03. Please do look for a massage school.  Mine is actually in a beauty school.  It costs me apx $110 for six 55-minute sessions.  It is SO worth it.  And you are never too old to start yoga.  I think you will find that your instructor will always advise you at the beginning of each class, "Only do as much as your body tells you to do today."  Given time, you will be amazed at how relaxing this time can be for you and while you will never move like a six year old again, you will find you slowly gain more and more flexibility.

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