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Aromasin (exestemane) stories?

I saw my MO and told him that I wanted to try something else instead of arimidex due to intolerable side effects. I fully expected that I was going to try letrozole, but instead he suggested aromasin. He says in his personal experience, he has seen more patients able to tolerate aromasin than the other AI's. So I said sure, I'll try it. I didn't know a lot about it, and I can't find a lot of posts about it here. I do know it's steroid-based and a "suicidal" AI, meaning it's binding effects are permanent. I don't know what all that means in terms of side effects. I'm looking for some stories of women who have or are taking aromasin. Anything I need to watch out for? How are you doing on it? What is it's effect on your other health conditions?

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Comments

  • jrnj
    jrnj Member Posts: 407

    Whatjusthappened, My Dr. said the same thing. I started on aromosin in June, simultaneous with Lupron. Made it 6 weeks. I had a headache every day, insomnia while on a sleeping pill, and whole body felt swollen. I switched to anastrozole every other day. Seemed better at first, but my arms went numb and hurt every day from the elbow down, in addition to my feet and legs up to the knees. Tried brand name Arimidex, pretty much the same. Been off all of them for DIEP since end of December, except I took letrozole for 1 week in January. When I am feeling better I will try letrozole. Like an idiot, in December I said, maybe I should try aromasin again now that my ovaries are out and I'm not on Lupron. I didn't wean off arimidex properly. I got dizzy and nauseous so didn't try that again. Another factor though is my cholesterol. Aromosin is supposed to be the easiest on cholesterol and blood pressure. There is a part of me that wants to give it another shot, but I read it affects the head more than the others and I think it is true. It seems arimidex affects the arms the worst for some reason. I'll let you know what letrozole does to me.


  • whatjusthappened
    whatjusthappened Member Posts: 178

    Thanks JRNR, do let me know how the letrozole goes. There are not a lot of posts about aromasin on the boards, and I've wondered why that is. I'm only taking it every other day to start with, but it seems better than arimidex so far. I also noticed some swelling on the aromasin, mostly arms and torso. My watch is leaving an indentation on my arm which didn't happen before and I just look puffy in general. When you said aromasin effects the head more, do you mean like memory problems, forgetting words etc? Because I've noticed that a lot lately.

  • ajminn3
    ajminn3 Member Posts: 284

    Hi there,

    I’ve been on aromasin for about 6 months now. I feel I’ve tolerated it well overall. I do have some occasional hot flashes/night sweats and joint pain, but I find it to be manageable. I’m also very dry...everywhere. Eyes, skin, lady parts, etc but again, I’ve found it to be manageable. I do feel like I’ve gained some weight and it’s a lot harder to lose, but I think that is just what comes with being put in menopause early and having that lack of estrogen.

  • ReeaRite
    ReeaRite Member Posts: 5

    I have been on aromasin since December, after six months of Tamoxifen, post DCIS lumpectomies and radiation. No side effects attributable to aromasin, although I am tracking more carefully now. Thank you for raising the topic!

  • texgirl
    texgirl Member Posts: 17

    I have been on either Tamoxifen or AI's for 16 years. My first AI was Arimidex which caused undue issues and I personally felt as if I were a 90 year old shuffling around every day ! I switched to Aromasin and have been on it for about 13 years . It was a lifesaver. Gone were my previous issues and I have taken it faithfully ever since.

    At my 16 yr check up my Physician and I decided to have me go off my meds. Although ,I had "tried" it before for maybe 3 weeks, I started back. I think I was just too scared . I have decided I will live my life now and will continue my survivorship without the Aromasin.

    If I can offer any words of wisdom or experience,I would say ...if the first AI doesn't "fit you" then please try a different one. They affect each of us differently.

    I was kept on the AI's due to my staging and particularly my node status . The minimum for me was 10 years. Then we thought if I was doing well I would just continue. I did but now I'm at peace with stopping.

    Good luck with your meds !

  • aviva5675
    aviva5675 Member Posts: 836

    Getting put on Aromasin later in spring after my chemo and rads. Second go round and had 5 years of Anastrazole first time. Tolerated it ok but hated the flashes and weight gain.

  • elainetherese
    elainetherese Member Posts: 1,625

    I've been on Aromasin + Zoladex (ovulation suppression because not post-menopausal) for over six years now. At first, I got hot flashes, but those have subsided. This regimen made me moody; MO prescribed me low-dose Celexa, and that went away. This regimen gave me a serious case of osteoporosis. MO prescribed Prolia, and I'm back up to osteopenia. It's doable. I won't miss it after year seven, though.

  • betrayal
    betrayal Member Posts: 2,083

    Tried Arimidex for 10 months and had horrible side effects so MO switched me to Letrozole. It was less problematic than Arimidex but still had horrible joint pain, insomnia, crippling back pain despite 2 thoracic and 2 cervical epidurals, insomnia and night sweats. I stuck it out for nearly 2 years and cried "uncle". My MO had been pushing a switch to Exemestane but since it was the last on the list for AI's available, and I was unwilling to try Tamoxifen because I still have a uterus, I reluctantly agreed with the caveat that if intolerable I would go back to Letrozole. Since the switch I still have some vague joint issues but the insomnia is only occasional, the night sweats are just about gone and the crippling back pain after 2 years of rulong my life disappeared! I do get edema of my feet but I can live with that and I now wish I had made the switch earlier. Lesson learned that everyone will have different experiences on AI's and that you have to try to find the one that makes your QOL manageable. For me, that is Exemestane and I will take it for 2 more years since ILC was part of my dx. Good luck.

  • totallytubular
    totallytubular Member Posts: 17

    Hi I was on arimidex for almost 3.5 years.. I had bad mood, insomnia, brain fog, low energy. Switched to Aromasin and some improvement with mood etc.

    less hotflashes etc. I would say try the switch. what some women have had to go through on arimidex sounds so painful. Hoping I will have more energy when I can go off the meds!

    Best of luck,


    MB

  • LauraTJ
    LauraTJ Member Posts: 1

    I was on Anastrozole 1 mg for 1 month could not take side effects Oncologist took me off 1 week & then said retry still same side effects. Now on Exemestane 25 mg OK at 1st then joint pain mostly in arms elbow shoulders. I went off 2 days then tried back every other day and up to every day. Joint pain continues. Trying Physical Therapy, Acupuncture & massage any other suggestions. Also taking Ibuprofen sometimes.

  • moderators
    moderators Posts: 7,879

    Welcome, LauraTJ. We're glad you've joined us and hope you find this to be a supportive place! We definitely understand how hard the side effects can be to manage, and we hope you find some relief and advice here that may help.

    The Mods

  • whatjusthappened
    whatjusthappened Member Posts: 178

    Thank you everyone for sharing your replies. I haven't posted in a while since life and work have been crazy busy. I have been on Aromasin for a a couple of months now. I never went up to the full daily dose and have remained on it every other day. A couple of weeks after going on it I started having some cardiac issues, so my MO told me to hold off on increasing the dose, as cardiac side effects can happen in 5-8% of patients. There were other things going on at the time (including the COVID vaccine) so I can't be sure whether or not I can blame the Aromasin. Anyway, now I'm on a couple more prescriptions and am waiting for the results of some cardiac tests to see where to go from here. Side effect wise, I have swelling, joint pain, chest pain, fatigue, hot flashes, and confusion. If my tests don't show some other plausible reason for these side effects, I'm probably going to call it quits on the Aromasin, and maybe AI's in general. My quality of life has decreased to the point where I'm just getting depressed, and I don't think this is manageable for me long-term.

    LauraTJ, welcome to the forum. I wish you well and hope you are able to manage your side effects. I often take an ice pack to bed and that helps (I just put it wherever the pain is bothering me that night:)

  • 410Gateway
    410Gateway Member Posts: 1

    I just took Femara for a month and a half. I got the side effects they told me about joint pain,sweats.and hot flashes. But as with tamoxofin and aromidex I started with brain fog, forgetting words and finding it hard to speak. My doctor told me to stop the medicine until he saw me. During that time the memory problems starts to clear up. When I saw him he told me it was not from the medicine it was my depression and anxiety causing it because of the change the n estrogen. I am on the heavy side and understand that is where the estrogen comes from. I just don't know what to do because he got mad when I questioned him and now he is starting me on the last medicine. I am scared the same is going to happen

  • claireinaz
    claireinaz Member Posts: 679

    Been on it for 8 years now. No problems. I switched from Arimidex because of awful mood swings, trigger joints in my hands, and bloating on that drug.

    Aromasin for me was so much easier. However now I am losing bone because of being on it for so long, in spite of supplements and lots of weight bearing exercise and healthy living. I'm scheduled to get another Prolia shot next week and then one more administration in December. I go off all anti-hormonals completely in April 22 because more than10 years on these drugs isn't recommended and has no added benefit.


  • cbaird99
    cbaird99 Member Posts: 27

    May I ask, has your dr discussed the problems with going off of Prolia? I am in this boat and there is a real problem with ever being able to get off it, which no one ever told me about before I started Prolia. Trying to figure out what to do:(, would love any advice if you've rec'd any?

  • whatjusthappened
    whatjusthappened Member Posts: 178

    cbaird99, I have no answers for you, but I wonder the same thing about Prolia. I didn't get a lot of information about going on it, let alone going off of it. I'll be getting my fifth injection soon. I don't know how long people usually take it, but I already had osteoporosis when I went on AI's, so I'm guessing I'll be on it for a long time.

  • cbaird99
    cbaird99 Member Posts: 27

    I am sorry, and furious, to hear this. I feel like we were sold a bill of goods on Prolia which honestly is lining alot of pockets, and now are in a pretty scary trap with no easy way out. I am scheduled for another shot in July and am hoping it will be my last, but I think I am going to have to look beyond my onco for help with this. It's a mess for sure, as I figure out what I'm going to do I'll post it. I made the decision to stay on AI's after my five year mark, I had the BCI test with a risk of 4.5% which is borderline and I am also thinking about stopping letrozole too, which is the reason I went on the Prolia in the first place. It's all pretty upsetting and hard to figure out what the right decision is:(

  • whatjusthappened
    whatjusthappened Member Posts: 178

    cbaird99, from what at I've researched, you need to switch to a biphosphonate for a few years after stopping Prolia, or severe bone loss is almost a given. For people on AI's with osteoporosis or osteopenia, we're kind of stuck between a rock and a hard place. I had a follow-up dexa scan after the first few Prolia doses, and while my osteoporosis didn't get better, it didn't get any worse either. Maybe that's the best I can shoot for as long as I take an AI. How long have you been on letrozole?

  • cbaird99
    cbaird99 Member Posts: 27

    I've been on it for 5 years as of January. Yes I think I am going to have to go on something like Fossamax for a couple of years, which will still be an issue if I need dental work during that time. A few weeks ago I broke off a perfectly healthy tooth at the gumline, my dentist said he'd never seen anything like it, and I am convinced it is due to the Prolia. I am betting I need to find a endocrinologist that is up to speed on this and that will agree to do bone marker tests as we go to see when I can get off the biophosphate. If I go off the letrozole then I assume the oncologist will just stop seeing me and refuse to manage it any more, I may be wrong but I doubt it.

  • whatjusthappened
    whatjusthappened Member Posts: 178

    cbaird99, I hope that is not the case that your MO would refuse to follow you if you refuse a medication. There are a lot of women who simply cannot tolerate these medications and I can't believe that they would be "dumped" because of it. I know I haven't been completely compliant, bit it's certainly not for lack of trying.

    I'm so sorry to hear about your tooth. That is very strange indeed, and it wouldn't surprise me if Prolia was involved. I was told the same about dental work, that I would never find a dentist willing to work on me, so I better take really good care of my teeth. Prolia has some pretty severe potential side effects, yet I received no patient education about it to make an informed decision (other than what I looked up myself). I wish I had read more, but I was on it right from the start and a little overwhelmed with information at the time. If you do happen to get in to see an endocrinologist, please come back and give an update. I'd be very interested to see what they have to say.

  • cbaird99
    cbaird99 Member Posts: 27

    Thanks for your kind words Whatjusthappened:). Sorry if I come across as crabby...but I am lol. We all have alot to deal with, not just breast cancer, and to have something like Prolia presented like it is, it's just not fair. I'll be glad to pass on any info I get. What I need to do now is decide if I will stop the AI altogether, it feels like the right thing to do but, having lost my husband 10 years ago to brain cancer, taking that "leap" is hard to do.

  • whatjusthappened
    whatjusthappened Member Posts: 178

    cbaird99, you've earned the right to be crabby so no judgement here:) I am sorry to hear about your husband- what a terrible loss for you. I can certainly understand why you are hesitant about stopping the letrozole with what you've been through. I know that is not an easy decision to make, and wish you all the best with whatever you decide to do.

  • Beekc
    Beekc Member Posts: 31

    Hi all,

    I’ve been reading your posts. I’m on the front edge of this osteoporosis/post-bc/aromatase/Prolia decision. The prescription for AI is sitting at the pharmacy as I write. I had declined Prolia a decade ago years before this recent Single Mast. Now I’m having to revisit this decision with pressure from the young oncologist to go with both drugs which could offer a 5% reduced chance of recurrence. I’ve retired. Travel years left. My dentist is anti-drug. All very confusing.

    Thanks so much for your continued thoughts!

  • cbaird99
    cbaird99 Member Posts: 27

    HI Beekc,

    Idk what I can contribute to your thoughts/decision but I'll throw my two cents in! Questions tho...Why were you offered Prolia 10 years ago, were you already in osteoporisis? That must have been when Prolia first came out I think so curious on that but glad you declined. So you are about to go on the AI for the first time after a recent diagnosis/surgery? Where did they come up with the 5% reduced change, did you have a cancer indexing test on the tumor material recently, and did you have any other treatment after the surgery? And, which AI? I was on letrozole for 5 years, I was afraid of the tamoxifen as I have some cardiac issues in the family, in retrospect I probably would have gone with it because it does not have the bone loss issues that I incurred with letrozole, which is why I got talked into the Prolia. Dental issues are my thoughts too with a recent unexplained breakoff of a healthy tooth. I had decided after the five year mark to stay on all this but am now changing my mind. I have a meeting, probably final, with the onco 7/12 to tell her I am stopping the AI, and the Prolia, and that my PCP has agreed to immediately put me on a relay drug (fosamax or actonel I haven't decided yet) and to do bone marker tests for me as time goes on to see what's happening. I decided I'd take the 4.5% risk of a distant cancer over the next 5 years than the much larger risk at least to me, of my bones being affected and having to stay on Prolia. So, that's where I am at, I hate all the bone meds but Prolia to me is a scary trap that I want out of.


  • Beekc
    Beekc Member Posts: 31

    Thank you. Yes Osteo appeared after years of Fosomax so I was offered Prolia before and declined. I understand the Aromatase may the the least likely to I interfere with bone density of the AIs. But it’s expensive!! So I’ll try it beginning this week and see what side effects are involved. I’m told by my (homeopathic expert) Pharmacist that I’m just in a catch 22. As is all of our world! Thanks for sharing everyone!

  • whatjusthappened
    whatjusthappened Member Posts: 178

    cbaird99 and Beekc, you ought to check out this article about Prolia. Apparently this study shows it to reduce recurrence risk when it is given along with an AI.

    https://www.breastcancer.org/research-news/prolia-...

    This line particularly caught my attention:

    "Our new data suggest that this treatment should be offered to all patients with hormone-receptor-positive breast cancer who are receiving adjuvant aromatase inhibitor therapy, irrespective of their bone health status," said Michael Gnant, M.D., professor of surgery at the Medical University of Vienna.

    Looks like someone wants to get on the gravy train to me. What do you think?

  • homemom
    homemom Member Posts: 829

    I did Prolila and it worked as far as increasing the density in my bones, so we stopped. I also walk up to 4 miles 3-5 times a week and started being better at taking my calcium. I just started with a PCP and he said that Prolilia works, but when you stop, your bones go back to losing density. I will be 7 years on AI this December and I'm definitely getting off of it. I've had issues losing weight, thinning hair, uber dry vajayjay, and now I see it could also contribute to CV issues.


    I have a question though. I started taking a natural supplement that has saw palmetto for hormone balance. Is that ok to take?

  • fairchild
    fairchild Member Posts: 138

    Ladies,

    I have a question about aromasin. I was on Femera for almost 3 years, and was fine at first, but then started having horrible pain in my feet, hips, and back. Finally they discontinued that drug and switched me to Aromasin about 6 months ago. The same kind of pain is present, except that it's actually worse in my feet. It feels like my heel cords are very tight, and no matter how much I stretch them they hurt at every single step.

    Is this related to Aromasin? Any ideas about alternatives that might work? I'm just so tired of feeling 90 years old and hobbling around!

    Thanks!

  • whatjusthappened
    whatjusthappened Member Posts: 178

    Fairchild, I took arimidex first for about a year and a half and changed to aromasin because of side effects, debilitating pain being the worst of them. I had pain on aromasin too, though it varied in intensity and location. I talked to my MO and we decided that I would stay off an AI for a while, see how I feel, and revisit going back on one later. I've been off all AI's for a couple of months, and while some pains have gone away, some have persisted. I have found throughout this process that at least some of my aches and pains have physiological causes such as arthritis, tendonitis, muscle tears, and so forth (all found by imaging). I do not believe that an AI caused all these problems, but rather that it aggravated existing problems. We know that estrogen plays a lot of important roles in the body, and one of them is to reduce inflammation. It then makes sense that if we have any kind of damage in our body and then take the estrogen away, then things that were not bothering us before might really start to hurt. This is of course just my own personal musing, but it makes sense to me. What it doesn't answer is why some people do much better on one AI over another one, since they all reduce estrogen.

    So in answer to your question, I absolutely think your pain could be related to the aromasin. But it could also be that you've got something else going on that the aromasin is aggravating. Sciatica, for instance, can cause pain in all the areas you describe. It might be worth taking to your doctor just to make sure there isn't anything else going on, if you haven't already done so.

    I don't have any ideas for alternatives for you, but if you find something that helps, please come back and post it. I relate so much to what you said about feeling 90 years old. I saw someone post somewhere about calling their AI their "aging-at-the-speed-of-light" pill. I was in such good shape before my BC diagnosis, but I feel I've aged at least 20 years since then.

    I sincerely hope that you find some relief!

  • Beekc
    Beekc Member Posts: 31

    Thank you. Helpful consideration. Here’s a line that caught my eye…”…with Prolia had an 18% lower risk of recurrence than women who were being treated with the placebo. This is about a 2% absolute reduction in risk” (of BC Recurrence). I continue to be concerned about the side effects. Since this is a 2015 study. I hope there will be continued research that offers bone density improvement. My friend is doing well improving bone density on her Dexa scan with AlgaeCal products. I don’t tolerate the magnesium in that well, so I’m taking OsteoK supplements rec by a homeopathic physician. Thanks for your research!