Life on aromasin

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  • songbird68
    songbird68 Member Posts: 190
    edited April 2015

    Wishing you well, Rozem:)

    x x

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  • WaveWhisperer
    WaveWhisperer Member Posts: 898
    edited April 2015

    Iago, question for you: I bought women's Romaine foam yesterday, to try to help with this hair loss. The booklet says Romaine will NOT help hair loss due to certain prescription medications and does not help with patchy baldness, which I have. So is it worth the trouble and money to try it for 6 months to see? It says it's helpful only for those with hereditary hair loss.

    What to do?

    Thanks!

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  • lago
    lago Member Posts: 17,186
    edited April 2015

    Wave I know it has helped some (including a friend of mine). I don't look at this as medication induced like chemo. I look at this as lack of estrogen causing the hair loss. I know it's helped me. Slowed it down for sure and I do have some growth.

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  • WaveWhisperer
    WaveWhisperer Member Posts: 898
    edited April 2015

    Makes sense. Thanks! I'm going to use it religiously.

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  • ndgrrl
    ndgrrl Member Posts: 741
    edited April 2015

    HI,  I heard Biotine is good for hair loss, I have not tried it yet but wow since my ovaries have been removed I am losing hair like crazy. Luckily I had lots. But it is so concerning to take handfuls out of the tub.

    Have any of you been told its good to switch from Tamoxifen within two years of starting it if you go into menopause during that time?  The MO had me get ready for an AI- took me off Tamoxifen for a week before surgery and month after and had me get a bone scan but since I asked if it was possible I stay on Tamoxifen he left me on it saying when I see him in 3 months we can decide what is best for me to do.

    I even asked him if going on Nothing since my ovaries were removed was an option- he said yes it is an option but he didn't recommend it and showed me I am 100 percent ER and PR positive so he said treatment will work good for me. 

    UFFF.. its just too confusing and I just want to do what is best but still be able to live a decent life.

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  • angelia50
    angelia50 Member Posts: 381
    edited April 2015

    SchoolCons, did they do any kind of scans or test to your knee? I have had knee replacement and for about a week now, that knee has driven me crazy. I started taking Arimidex in August 2014 and like you, had some morning aches but nothing like this. If I"m sitting, its not too bad but walking a short while, it tightens up, feels almost like the muscle won't stretch.

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  • lago
    lago Member Posts: 17,186
    edited April 2015

    ndgrrl once your ovaries shut down your body makes estrogen from fat. This is why after menopause we tend to put weight on in the middle. So although your ovaries have shut down you are still making estrogen from other places.

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  • annieb4
    annieb4 Member Posts: 106
    edited April 2015


    I was talking to one of the ladies at work, about just the effects of cancer. I told her I don't think I will ever feel NORMAL again. And these damn pills, I can't imagine taking them for 20 years..  It will almost be two years for me..and I am thinking 5 total is a good number !! Maybe if I up my hot flash medicine I will be happier !!!

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  • SchoolCounselor
    SchoolCounselor Member Posts: 452
    edited April 2015

    Angelia. I had an X-ray and MRI of my knees. Some degeneration but not consistent with the pain I was having.

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  • Lucy1010
    Lucy1010 Member Posts: 20
    edited April 2015

    I've been on Aromasin for 4 months. I just saw my MO and she wants me to start taking a pill for my bones. I had my DEXA and all places were 2.5 standard deviations above normal. Just wondering if this is a common practice

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  • bc101
    bc101 Member Posts: 1,108
    edited April 2015

    Yes, it is common practice. I think typically they want to do the Dexascan before you start the AI's because they want to track any bone loss with the drug. I had the Dexascan done just a few days after I started AI's and the test showed that I had osteoporosis. During my last follow up they did another scan since it's been about 2 years. The good news is that since I've been on Zometa (an infusion give twice a year), the latest scan showed improvement and now I'm in the osteopenia category. We're not sure if it was the Zometa or not because I had the test done at a different location but it's definitely better than it was, so most likely the infusions and / or the Calcium supplements helped. Ideally you should have the Dexascan done at the same clinic for the most accurate results.

    What was your score? Scores of +1.0 are good. Numbers between +1 and - 1 show normal bone mineral density. Scores between -1 and -2.5 indicate Osteopenia (thin bones) and less than -2.5 indicate Osteoporosis (porous bones), eg. - 2.7, -3.0 etc. And -3.0 shows serious Osteoporosis.

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  • Lucy1010
    Lucy1010 Member Posts: 20
    edited April 2015

    I was between +2.5 to +3.0 for all areas.

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  • angelia50
    angelia50 Member Posts: 381
    edited April 2015

    School Couns, I missed that first post. So, what did they say was wrong with your knee? Was this before or after meds?

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  • annieb4
    annieb4 Member Posts: 106
    edited April 2015


    I am Osteopenia and was just told to make sure I take my calcium tablets  3x a day. It seems like everyone who is a little older is osteopenia, I would guess that is what happens to us as we age?

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  • lago
    lago Member Posts: 17,186
    edited April 2015

    I was 49 at diagnosis and asked my oncologist for a bone density test before chemo. I was already osteopenic. No surprise given my history, frame, caucasion and peri-menopausal.

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  • SchoolCounselor
    SchoolCounselor Member Posts: 452
    edited April 2015

    I have some degeneration-arthritis, but the pain was so severe my PT told me to see my MO.

    He told me to take two weeks off and to start Femera. It's been one week and my knees are definitely better. I still walk funny but I'm not having debilitating pain.

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  • angelia50
    angelia50 Member Posts: 381
    edited April 2015

    School, I stopped taking my Arimidex last Friday, to see if it helped. Seems I'm better but today, just walking around the grocery, with a cart, it started again. I have appointment Friday, so I hope it stops and its just the meds, nothing more serious.

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  • Leslienva
    Leslienva Member Posts: 489
    edited April 2015

    Do you have any side effects from the Zometa? The pills always gave me bad heartburn so I stopped taking them. Funny thing is, I went from osteoporosis to osteopenia without doing anything other than some weight bearing exercise and walking.

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  • bc101
    bc101 Member Posts: 1,108
    edited April 2015

    Leslie, I receive Zometa via infusion every 6 months. After the first dose I have not felt any side effects. That's awesome that the exercise worked for you. Great incentive for me to get on a weight bearing exercise program. What do you do?

    Angellia, yes, I think the Aromasin just makes any kind of pre-existing joint pain worse (arthritis, etc.), which in turn causes all sorts of anxiety. Exercise usually helps, though. Are you going to report it to your doc?

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  • lago
    lago Member Posts: 17,186
    edited April 2015

    Leslienva Did you have your scan on the same machine? Did the same tech read the results. You could have been on the border and that's why the change. Pills gave me reflux too. I'm on Prolia. Get my 2nd shot next week. So far no SE.

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  • angelia50
    angelia50 Member Posts: 381
    edited April 2015

    bc101, yes, I see my MO Friday and I took myself off Arimidex last Friday, just to see if it mattered. I thought it was better but of course, that was during the weekend when I was trying to keep off of my leg for the most part.

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  • Professor50
    Professor50 Member Posts: 220
    edited April 2015

    I never realized how much of this experience would involve prioritizing side effects! I was on tamoxifen for 3 months and could not bear the mental fog and sluggishness. I had a lot of stiffness and muscle pain (right away) but otherwise, felt pretty good. I slept really well, too. Finally, the fog just got me and I quit for 3 weeks. Last week, I had my first lupron shot and have been on aromasin ever since. Of course, it's just been a week but so far at least, none of the fog. I'll have my DEXAscan this summer... I am hoping that even if my bones start to act up I can somehow cope with that if this drug lets me keep my wits about me..

    We all react to these medications differently and there is often no way of knowing if it is the drug, the type of generic, the effects of age, menopause, and other things going on, but there has to be a way to create a liveable fulfilling life while also minimizing the chances of a recurrence. I am on it.

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  • bc101
    bc101 Member Posts: 1,108
    edited April 2015

    Professor, yes I can relate. Sometimes managing all these SE's feels like a full time job, and sometimes I wonder if I'm obsessing. I have had more appts. related to SE's than I ever did in active treatment. It's a lot to keep track of. I've spent a considerable amount of time creating my own cancer rehab program. I've had to search out help in this area because most things are not offered automatically. For example - the brain fog for me is HUGE. I didn't relate it to the AI at first so I kept waiting to get back to normal. When I didn't I started looking around for help. I finally found someone in cancer rehab to refer me to OT for cognitive therapy. It has helped immensely. Normally this kind of treatment is offered to those who've had chemo, but sometimes the brain fog from AI's tends to be overlooked. The SE's are not so obvious - our hair doesn't fall out and the treatment appears to be easy - just a tiny white pill! But it is a very powerful treatment. You're right, a lot of is is age, and for me, a 2nd, even deeper menopause. UGH. But I'm too afraid of cancer to go off it. Keep working on it. It's doable, but you have to have a team behind you supporting you. Good luck!

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  • Professor50
    Professor50 Member Posts: 220
    edited April 2015

    bc101 you took the words right out of my mouth! I agree 100% about the way that hormone therapy is just viewed as so easy and I am sure that compared to other treatments it really is easy but it is still a potentially life changing experience.

    I am very interested to hear you did some OT for the cognitive side effects. I am determined to not give up trying to prevent a recurrence and I am going to go through all these drugs one by one if need be to find one I can live with. You have inspired me, though, to keep an open mind about maybe treating the SEs! Very good. Okay.

    Good luck to you too!

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  • bc101
    bc101 Member Posts: 1,108
    edited April 2015

    Yes, the OT is VERY helpful. In my first session I was in tears describing my absent-mindedness, since one of my greatest strengths "before" was organizational skills. I've only had 3 sessions and she is ready to cut me loose. I'm scared to go it alone, although she tells me I'm the one who's really done all the work and I can always call her. I learned some valuable techniques and coping skills that I will have with me always.

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited April 2015

    bc

    that is amazing about the therapy.  I retired last year but when I worked I was always the one to remember the details.  Then towards the end.....not so good and kept missing details.  I find it hard to learn new systems and such now so really that is one reason I have not taken a job in retirement

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  • bc101
    bc101 Member Posts: 1,108
    edited April 2015

    I'm not working right now, but I need to get back into at least a part time job to help with expenses. I'm very anxious about that. Before I was diagnosed I had started a new job and things weren't going well. Maybe I was just too tired and maybe the job just wasn't right for me, but I left after I found out I had cancer. I just couldn't handle it. So now I'm working on building up my stamina. I think the trick is to know your limits.

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited April 2015

    bc101, I agree and hope you will find the right spot for you

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  • Leslienva
    Leslienva Member Posts: 489
    edited April 2015

    I had the Dexascan at the same place, same machine. As for exercise, I just did walking (outside, treadmill, elliptical) and then exercises with hand weights.

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  • RaiderGirl
    RaiderGirl Member Posts: 419
    edited April 2015

    Hii ladies,

    Some interesting sharing from my PCP. I love the man. We sit and talk like buddies. He asks how I am, what I need, how he can help.

    So, I saw the PCP for a pap that the MO insisted on but wouldn't do, and for a Lipid profile, that the MO insisted on but wouldn't order either.

    PCP shared the following, over coffee in a non official setting. So this was not medical advice. These are his observations on his patients Rx'd AI's from the MO.

    1)Very thin women do very poorly on AI, 2) very heavy women also do poorly on AI's. 3) Full figured do the best.

    His conclusions: We have (had) three different Estrogens. Estradiol produced by ovaries before menopause, Estriol produced during pregnancy, Estrone in fat cells . During/after menopause most women would agree that they gain weight and its harder to lose that weight. The body wants the fat so make Estrone.

    A) AI's try to deplete all estrogen but it really can't. There is always some floating around.

    B ) a full figured woman has more estrogen even while on AI's than a very thin woman simply because more adipose cells produce more estrogen.

    C) very over weight women run higher risks of recurrence due to even higher estrone levels .Plus of course, very overweight will always suffer more from the SE of joint pain., muscle pain etc. Which is so unfair because its hardest to lose weight now and hardest to exercise while heavy and suffering from SE. I was afraid to ask what he thought was very overweight.

    My conclusion, for the first time ever in my life my Latina hips and butt may be a benefit. LOL

    PCP also said that most MO are fully focused on treating a cancer or preventing a recurrence. All else is secondary. Tell an MO that you have joint paint from AI's and he is thinking its better than pain from cancer.

    So, we have to push for help for the SE. I take 3 different meds to counteract the SE from Aromasin.

    I am feeling much better lately.

    Perhaps I have turned a corner.

    Ok I done,

    Thanks for reading.



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