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Life on aromasin

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  • CaliKelly
    CaliKelly Member Posts: 198
    edited November 2018
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    Hi, I take anastrazole, a little different from aromasin, but same type medication. I think all the side effects are similar. I felt like a creaky old grandma at first, and I'm a fitness nut. But gradually(over 6 months) started adjusting to it, now my aches and pains are from being able to increase my exercise and weight training!😃Hang in there! It'll get better. If it doesn't, tell your oncologist, there are remedies 😚💖

  • jaybird627
    jaybird627 Member Posts: 1,227
    edited November 2018
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    Hi Bliss,

    No, the Exemestane through my insurance is $75/mo (typo above). I am switching to generic Arimidex. Gah! Sorry for the confusion. Generic is $14 for 3 mos! Different tier. I'll try it. If the SE's are no worse then I'll stay on it otherwise I can go back to Exemestane and pay more. It's all about the SE's. I think the Wobenzem is helping. I take 2 at bedtime. I am tolerating the Exemestane, I just don't like the price!

    J~

  • AngelsGal57
    AngelsGal57 Member Posts: 103
    edited November 2018
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    Jaybird,

    I take quite a few supplements as well. Glutethion, Beta Glucan, CO Q 10, a whey protien called Immunical that builds your immune system at the cellular level, Biotin for nails and hair, calcium and D, Garlic and Cranberry capsules, and a few more that I cant remember. My dr is very supportive. My husband keeps up on the latest research in the Natural Health realm. I tend to be a bit stand offish until I see research studies.

    So far it is difficult to tell if my SE's are from my Kadcyla infusion or starting the Aromasin. I am finding myself extremely tired during the day, even with a good night sleep.

    Angelsgal

  • Blownaway
    Blownaway Member Posts: 662
    edited November 2018
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    I started and stopped Tamo 3 times due to s/e's. Have been on examestane for about 5 months with no problems

  • AngelsGal57
    AngelsGal57 Member Posts: 103
    edited November 2018
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    Blownaway,

    we seem to be similar in our treatments. I am just starting Aromasin after a bad run with Tamoxefin and I have a question. Have you read anywhere about starting out slowly on the AIs and building up to EVERYDAY? I would like to do every other day and work my way up to every day and wondered if anyone has done that successfully. I am so glad to hear you havent had a hard time with it. Makes me optimystic.

    Angelsgal

  • KimE
    KimE Member Posts: 34
    edited November 2018
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    Has anyone been diagnosed with diabetes since you started taking aromasin? I've been on aromasin for over a year and now have diabetes and high cholesterol.

  • dtad
    dtad Member Posts: 771
    edited November 2018
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    KimE....so sorry you are experiencing some serious side effects from the aromasin. Maybe switching to another aromatase inhibitor would help elevate those side effects. Good luck and keep us posted.

  • Blownaway
    Blownaway Member Posts: 662
    edited November 2018
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    Angelsgal - It never occurred to me to take the exemestane any other way than my newest onco said to take it,after he told me that if I was his sister he would beat me over the head and make me take it everyday....he said that after I told him I stopped taking my tamoxifen.

  • jaybird627
    jaybird627 Member Posts: 1,227
    edited November 2018
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    Hey Ladies,

    My onc takes 4/5 vials of blood when I see him so in January I'll know if my numbers still look "good", no known diabetic issues with AI's. But I suppose anything is possible?? Watch your diet?

    Taking the Anastrozole with no apparent side effects. Have some aches and pains but it could be the fall/damp weather. Could be my being back to work (I'm a flight attendant) full time. My onc insists I take an AI due to my BRCA2+ AND my 2nd BC. He says 10 years. So as long as I tolerate one of them I'm in for the long haul. I take it at night with 2 Wobenzym tablets. I take 2 in the morning also if I'm feeling achy The bottle says you can take up to 12/day. I take a lot of other supplements so until or unless my aches and pains get worsee I'll stay of my current regimen.

    Angelsgal, I too wanted to start the AI on a not-every-day regimen but I jumped right in. I figure if I DO have major side effects then I'll do 3x/week. I don't know how ONE TINY PILL can work the same for all women??? And maybe some B vitamins for energy? Or bee pollen? Maybe a gut cleanse? Too much gluten or similar? You may have a food allergy that you are unaware of? Just some ideas.

    I think I mentioned previously that tart cherry juice daily is supposed to help with joint health. When I remember to I take it I do one big shot of it. It's expensive so I figure it's like taking a pill. I'd do a glassful if I had major pain.

    I also see my chiropractor when I can. Looking for a new one who is local, my current one is in Illinois and while I absolutely love him I need someone local to see more regularly. Looking for a local acupuncturist too.

    Lets keep this dialogue going! :)

    J~

  • Imkopy2
    Imkopy2 Member Posts: 214
    edited November 2018
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    Hi ladies hope everyone enjoyed the holiday, unless of course you’re not in the US in which case it would just be Thursday lol! I’m on my 3rd week of aromasin after being on arimidex for about 2 years. On arimidex I just hurt, I thought my muscle aches was from working out... then I realized I may have started getting SEs that I couldn’t live with if there was another option. My onc said to give aromasin a whirl. So far so good. A year ago I had a lipid panel so I’d have a baseline to compare. Last year my glucose was a bit high and there were a few areas (LDL/ triglycerides) that needed attention. You can’t change everything in a day so I started exercise 4-5 Xs a week and cut my bread & watched my sugar intake. My last test showed my glucose had improved by 15, triglycerides went down by 20 but my LDL went up by 10. My onc said I was doing great but that it may just be my arimidex. Now I’m on aromasin but I asked what if I do a plant based diet twice a week. She said go for it and will test me in January. We’ll see.

    I def think lifestyle helps and diet changes, I think gluten could certainly be a cu..Jaybird I take tart cherry supplements everyday with my other supplements. Not nearly as expensive and who knows maybe it helped my numbers. My husband has been on it for his gout and cholesterol...so I joined the regime.

  • Bliss58
    Bliss58 Member Posts: 938
    edited November 2018
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    Goldfish, sorry I haven't been back on the boards in a while. Yes, I will be on Exemestane one year in January, and so far, I am doing well, but in 6 more mos., who knows. Good luck to you.

  • Debsver
    Debsver Member Posts: 1
    edited December 2018
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    I began Aromasin a month ago after starting on Anastrozole (lasted 12 days), then Tamoxifen for 1 month with terrible diarrhea, heartburn etc. I had a few days of heart palpitations & lightheadeness on Aromasin but they are getting better. Has anyone else experienced any se’s like that? My feet seem to be getting achy, hoping it does not get worse. If se’s get worse I possibly will go off since my cancer was hormone positive non-invasive, low stage 1, no lymph node involvement, genetic testing came back negative & onco score also very good. Anybody else opt out

  • Dawn1982
    Dawn1982 Member Posts: 7
    edited December 2018
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    Hi all,

    Question for you about aromasin: In June I started taking exemestane (along with lupron shots). I had a handful of SEs for the first month - achey feet when I woke each morning, some tears, hot flashes, etc. But they were manageable and continued to improved. I did just fine for the next 3-4 months.

    In October, my pharmacy started carrying a different generic exemestane. After a month on it, I've had side effects like at the start. The worst of these is the body aches and pains - especially in my mid back and thighs/femurs. I'm 35 years old and can barely get out of the car. I'm still working out 3x a week without too much trouble, but I feel like crap most of the time. I'm wondering if anyone else has ever struggled with a generic manufacturer switch? The old one that I liked was made by Alvogen; this new one is made by Cipla. My oncologist is investigating other pharmacies, etc .... but I'm not sure if it's the switch, or something else.

    Looking for any experiences or insights you all may have. Thanks so much in advance!

    xoxo D



  • murfy
    murfy Member Posts: 254
    edited December 2018
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    SEs seem individual to the person and to the brand. Walgreen's generic works the best for me and my SEs mostly affect right wrist and both thumbs. Some ladies, me included, started with 1/4 pill and worked up to full dose. When my trigger thumb wouldn't straighten, my MO and I lowered to 1/4 dose for a week at which time that symptom completely disappeared. Went back to full dose and weeks later still no thumb symptoms. It is an interesting drug. I've never been tempted to stop taking completely and think lower dose when necessary is better than no dose whatsoever

    Did you see that BCO just posted results of new trial compilations that show AIs for TEN YEARS will significantly reduce recurrence vs just taking for 5 years or no years? Darn. Just when I'd gotten my head around 5 years ONLY. Gotta think about that one.

  • dorimak
    dorimak Member Posts: 89
    edited December 2018
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    bgail84 I had a consultation with the integrative center at our university hospital and one of the things they recommended “to keep things moving” was magnesium citrate. Might be worth discussing with your doctor.

  • biscuits
    biscuits Member Posts: 2,158
    edited December 2018
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    Debsver...I was on Anastrozole for 2 1/2 years and my Onc finally talked me into switching to Aromasin one month ago to see it quality of life would improve. I have noticed lightheadedness and while I do experience heart palpitations at times, now they certainly last longer. I am happy with the switch, though. I have sooooo much more energy than on the Anastrozole. Aches and pains have definitely lessened, but I do struggle with the bones aching in my feet. However, I am 63 and work full time in a physical job and get in about 8 miles worth of steps a day. That may add to my feet pain. Hoping the two trigger fingers I developed will also go away, or get better on the new med.

  • bennybear
    bennybear Member Posts: 245
    edited December 2018
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    starting tomorrow, what time is best to take it? Did anyone stagger the start of taking aromasin?

  • biscuits
    biscuits Member Posts: 2,158
    edited December 2018
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    I take mine first thing in the morning. If I take it later in the day, it does cause me to have sleeping issues.

  • elainetherese
    elainetherese Member Posts: 1,627
    edited December 2018
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    I also take mine in the morning, after I have had something to eat. Yes, if I take it at night, I do have problems sleeping.

  • bennybear
    bennybear Member Posts: 245
    edited December 2018
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    thanks for advice, I am trying morning too., anyone having hair thinning on this?

  • 98hgmom
    98hgmom Member Posts: 8
    edited December 2018
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    I take mine in the morning. No hair thinning yet but I have only been on it for three months.

  • Imkopy2
    Imkopy2 Member Posts: 214
    edited December 2018
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    I also take mine in the am (I did the same with Arimidex) I’ve only been on aromasin for a month but I also take biotin and have done so since chemo.

    Good luck!

  • Runrcrb
    Runrcrb Member Posts: 202
    edited December 2018
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    bennybear - i take aromasin in the morning- confirmed last year that it caused my insomnia if I took it at night. Been on it since July 2017 w minimal side effects. Working out daily helps every thing. Reducing carbs (bread specifically) helped reduce hot flashes. And I have as much hair as before chemo- just tons curlier.


  • bennybear
    bennybear Member Posts: 245
    edited December 2018
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    thanks everyone, started it this am. Hope my hair and joints approve!

  • jaybird627
    jaybird627 Member Posts: 1,227
    edited December 2018
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    Hey. Me again. lol!

    My back/spine pain was getting intolerable so I stopped for 2 weeks so I can start again and figure out if it is the pill that is causing the pain. It's not a back/muscle type pain but a bone pain. I'll go back to the Aromasin despite the cost if I have to. My eyelashes are falling out! They were growing okay on Aromasin. Maybe it is a new joint supplement I've been taking? UGH!

    Oh, and I take my pill at night as it's easiest to remember then. I'm comparing side effects between the 2 pills.

    J~

  • Occovegirl
    Occovegirl Member Posts: 14
    edited December 2018
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    Hi jaybird

    I was on arimidex for 3 months and had to stop i had so many pains everywhere. Than tried femara and had to stop that for pain and side effects. Now I am on the aromasin

    It's been 2 weeks and horrible side effects. I have no quality of life. My hands and feet swell so bad I can't really walk. I have tried to talk to my oncology team but they say stay on it. I finally have an appointment next week to a see about going back on tamoxifen. It's horrible what we all go thru i am only a 3 year survivor so they are trying to force the meds for ten years I am not going to be able do that hope you feel better soon












  • dtad
    dtad Member Posts: 771
    edited December 2018
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    Occovegirl...so sorry you are going through this. It infuriates me how so many MOs disregard side effects of the drugs they are prescibing! Perhaps if they actually listened and worked with us, more people would stay on the recommended therapy. Just want to add that if for some reason you cannot tolerate any of the anti hormones, weight loss and exercise has been shown to lower recurrence rates by 40 percent. This is almost the same reduction as the drugs. Not trying to influence you in anyway, just FYI. Good luck and keep us posted.

  • jaybird627
    jaybird627 Member Posts: 1,227
    edited December 2018
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    Hey Gals, I stopped the Anastrozole 5 days ago and my back/spine pain is almost completely gone. I'll start again in a week or so just to confirm that it is the drug that is causing the pain. My EYELASHES are falling out - a possible side affect??? Watching that too.

    And I've developed an infection on my previously radiated breast, the most recently radiated breast is fine. UGH!!!

    J~

  • lohoff
    lohoff Member Posts: 45
    edited December 2018
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    Just started Aromasin a day ago. I switched from Arimidex because it caused permanent eye damage to both my eyes. Now I have to be followed by a retinal specialist. I already see so many doctors - family doctor, MO, RO, surgeon, pain doctor, gynecologist, dermatologist due to skin cancer 6 months ago, dentist because of so much damage to teeth and gums from chemo and radiation. Does it ever end? Feeling a little discouraged. On a positive note, I had an oncology appointment on Monday and my bloodwork is all normal. Happy I hope I don't have any side effects from Aromasin. My hair was falling out on Arimidex.

  • bennybear
    bennybear Member Posts: 245
    edited December 2018
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    I am so sorry you are having such severe problems. Yikes your poor eyes! I too was losing hair on Anasrozole and just started te aromasin this week. I hope you do better on the aromasin!