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Life on aromasin

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Comments

  • Bliss58
    Bliss58 Member Posts: 938
    edited December 2018

    I've been on Aromasin for almost a year, aches and pains, yes, but the trigger thumb I developed after a year on Letrozole has disappeared, so that's a plus. I am one with some hair thinning on this drug, in the front, but not too bad, although it does bug me. Oh well...just one more thing.

  • claireinaz
    claireinaz Member Posts: 714
    edited December 2018

    I've been on Aromasin about 3 years now...? Anyway, similar to Bliss58, trigger fingers from Arimidex resolved themselves within about a week after I switched to Aromasin. Hair-thinning--maybe...but might be age-related. I haven't noticed much since my hair is fine and straight anyway. I have hip joint aches from time to time but regular yoga seems to help. I'm glad so far I'm okay on this drug--Arimidex was a bear.

    Bliss58, I do like your Tibetan proverb! I'm going to remember it.

    Claire in AZ

  • Momdin
    Momdin Member Posts: 16
    edited December 2018

    Hello everyone I’m a little stressed two months ago i injured my back picking up cases of water. I’ve been taking Arimidex for almost 2yrs and I noticed on my recent blood work my calcium number is elevated but still in the normal range. I did have an X-ray on my back and my doctor said it looked clear. I see my oncologist next week and I’m so terrified that my cancer is coming back. If I can change the Arimidex any suggestions on what else I can take? I also get lupron injections every 3 months.

  • feelingfeline
    feelingfeline Member Posts: 5,145
    edited December 2018

    Hi Mom, are you on calcium supplements, here they are commonly prescribed because the exemestane strips your calcium and has a poss SE of osteoporosis? Supplements could mess with your numbers.

  • catlady44
    catlady44 Member Posts: 73
    edited December 2018

    Momdin,

    It's been a while since I've been on this page, so sorry if I'm behind on the convo. Have they been doing DEXA scans before or during the time you've been on Arimidex? Right after I finished treatment, I started getting rib fractures. I wasn't worried until my onc ordered a bone scan. I had a panic attack while in the machine! I've had 3 bone scans now, but so far, no mets. I did find out that I have multiple areas of joint degeneration, and severe osteopenia. I'm not on Prolia which has slowed down the frequency of rib fractures, but they still occur. My spine is a complete disaster, but some of that is most likely hereditary. Arimidex certainly didn't help! I'm sorry you're suffering and esp sorry you're experiencing the fear that most of us seem to have!

  • lohoff
    lohoff Member Posts: 45
    edited December 2018

    Has anyone grown their hair back after stopping Aromasin? If yes, how long did it take to come back in? My hair thinned a lot on Arimidex, not sure what to expect on Aromasin. TIA

  • bennybear
    bennybear Member Posts: 245
    edited December 2018

    I am hopeful too, so interested in what others have found

  • Imkopy2
    Imkopy2 Member Posts: 214
    edited December 2018

    I’ve been on aromasin for only a couple of months (was on arimidex before) I do take biotin, coconut oil and omega 3 so not sure of that will have any affect on thinning hair. Hopefully others chime in

  • snickersmom
    snickersmom Member Posts: 599
    edited December 2018

    I'm on aromatose inhibitor (generic) and don't really have big problems with it, but I have noticed that my hair is thinning. I started taking Biotin about a month ago and am hoping it will help. I've always had extremely thick hair but not anymore. My MO took me off Fosomax because I have had degenerative jawbone issues a couple of years ago before breast cancer. My Dexa numbers have been really good, thankfully, so he said he will keep me off unless my bones start to weaken.

    I don't know the dosage of Biotin to take.How much do you all take?


  • jaybird627
    jaybird627 Member Posts: 1,227
    edited December 2018

    Hi Snickersmom,

    I take Biosil, two per day. I'm not sure if it works or not. I've been losing my eyelashes like crazy. I think it's the Anastrozole but maybe not as its is a 'rare' side effect. My eyebrows came back just as thin as ever. Going to get microblading so at least one aspect of my face looks more like 'normal'. I've always had fine, thin hair but as it hasn't all come back yet (less than 2" right now) I can't really tell if the A.I. has impacted it.

    I have sore joints and spine. Blaming the A.I. I did stop for 2 weeks so that I could enjoy Christmas without aches/pains. I may go back on Aromasin just to compare side effects. I see my oncologist in January. He's very pro tumor markers and always draws a lot of blood.


    J~

  • snickersmom
    snickersmom Member Posts: 599
    edited December 2018

    Thanks, Jaybird. I had my eyebrows done (I think it's called permanent, but of course it isn't) about 6-7 years ago. I live in Florida year-round and I never remember to put sunscreen on them so they did fade faster than I would have liked. Then about 3 years ago I had them microbladed but it hurt like the dickens because it was over scar tissue from the first time. They didn't last anywhere near as long as I had hoped. The gal that did them was running a great special this summer so I had them done again, but went back to the permanent tattooing. I have a friend who had them done and she has beautiful olive skin, so hers seem to look a lot better than mine did. Now I'm hoping to get at least 3-4 years out of them. If I had known, I wouldn't have bothered with the microblading. I hope you get more years out of the microblading.

    I will look for Biosil. I haven't noticed any difference yet with the Biotin but I haven't been taking it for very long - just a couple of months.

    I've been lucky - I had back issues already so I didn't even think that any aches and pains might be the AI. I did feel better after I was on it for a year or so.

  • HopefulYogi
    HopefulYogi Member Posts: 38
    edited January 2019

    hi everyone, haven't been on this site in a while. Checking back in because of my hair loss/thinning on Exemestane . I have been on it almost 2 yrs now. My hair was straight,fine and thin prior to chemo, but I definitely had a lot more of it then. My hair seemed to come back in nicely after chemo and even had a little bit of wave in it for several months!

    I've definitely been noticing more hair coming out from just regular washing and styling for last 3 months or so. It's gotten very thin in the front and crown area of my scalp. Can see a lot more of my scalp thru my hair than ever before. ( I shaved my head and started wearing a wig after my second chemo so I didn't have to deal with / look at my hair loss process in the mirror every day ) Another annoying thing is that my eyebrows have thinned also, but it hasn't slowed the facial/chin hairs down one damn bit!!! This S/E really bothers me. It's all shallow vanity I know, but as a single widowed mom @54 yrs old, it really does a number on your self confidence and self esteem !

    I work with an auyervedic consultant and have tried some Banyan products like hair capsules and oils, but that has not shown any improvement even after 2 months. 😞

    In addition to the hair loss, I have definitely gained weight, especially this last year. I seemed to have increased appetite in the evenings and crave carbs then. I also have never really gained back the same energy that I used to have Before Cancer. I already had a lot of arthritis in my joints and spinal stenosis ( thanks mom&dad), so most of my joint pain I already had prior (knee, hip, lower back). I'm sure the Exemestane only exacerbates that, but didn't cause it. I did have pain in both elbows for a while , which I thought was weird, but that has gone. Also pain in my feet which I am still dealing with. My MO did have me do tests/scans on my hip, knees and back to rule out another other issues, which gave me some peace of mind.

    I have done a lot of yoga in the past to help with weight management and my joints( before cancer). I do still practice but not daily as before. I also walk for exercise. That's all I have ever really done for exercise my whole life. Not a runner or a lifter.

    I see MO next week and dread getting on the scale!! She also has not been too helpful with my hair issues either in the past. We WILL discuss it again!

    Feel free to share any hair tips please!! 8 more years is a long way to go and I don't have that much hair left😩

    Well, that's my life on Exemestane , thanks for reading.

    🙏🏼



  • feelingfeline
    feelingfeline Member Posts: 5,145
    edited January 2019

    Ditto on the eyebrows, never really recovered after chemo. Also ditto on the eyebrow hairs in unwanted places (facial) Sad

  • notthrilled
    notthrilled Member Posts: 19
    edited January 2019

    So, I've been off the list for a few months. My side effects from the Exemestane are now tolerable, trigger fingers much better (letrizole killed my knees). This is what my regimen now is: I demand Greenstone generic from my CVS pharmacy (I'm told this is the closest to the non-generic compilation and there are anecdotal reports of less SEs) Daily. I take Turmeric (with black pepper) 500 mg (from Costco -thinking of doubling that), MoveFree Ultra or equivalent from Costco (main ingredient Hyaluronic Acid) once a day, Evening Primrose Oil 1000 mg twice a day, D3 2000 mg, Glucosamine Condoitin 1500/1200 twice a day. I still feel like I am 90, but it doesn't restrict my activities. i guess we shouldn't be surprised if our hair falls out since it is stripping the estrogen out of our bodies, I expect the difference is more radical for younger folks. I got a fitbit and try to do my steps. My main concern is the long term effect on my bones. Those meds like Fosamax scare the crap out of me with their side effects on jaws and teeth etc. ( the good news is you don't have cancer recurrence - of course, maybe you never would have, the bad news is you are crippled. Lovely).


    Oh, and I was on Celebrex too for several months and that did help a number of things, but its not recommended that you stay on it long, so I am trying to live without it (on the other hand, I bet they haven't done any studies on the health benefits of taking it when you are on AI.)

  • neogirl
    neogirl Member Posts: 54
    edited January 2019

    I have been on the aromasin for about 4 months now. ONC taking me off of it (maybe temp ) because of low platelett counts. Anybody else have these issues on the counts. I also get the xgeva and he has taken me off of that to for now.

  • notthrilled
    notthrilled Member Posts: 19
    edited February 2019

    On exemestane for a year. The last few weeks I have started having burning pain in the muscles/tendons running up the back of my right leg, from ankle to mid calf, most noticeable at night. I am thinking this has to do with the AI. Anyone else have this? Ususally I just have trigger finger/tendonitis in my fingers at night.

  • capecodgirl
    capecodgirl Member Posts: 93
    edited February 2019

    Not Thrilled- I have the burning in my ankle when I move it a certain way. The skin around my ankle and on my foot is numb as well.

    My fingers are stiff and I have that same burning inside my hands running over the knuckles. The skin on my hands burns a lot as well, although it is also numb as well, if that makes sense.

    I was on aromasin for 3 months, took one month off and was going to return to tamoxifen. When it came time I just could not make myself do the tamoxifen, so went on a different brand of exemestane (cipro I think). The burning inside the skin is abating somewhat, but the burning on the skin is increasing. Hoping that yours will decrease.

    On another note- I have the usual knee, ankle, wrist and elbow joint issues, but now my shoulders and biceps are achy too. Does anyone know if this could be a Se of the exemestane

  • ginger48
    ginger48 Member Posts: 1,437
    edited March 2019

    This is a good article.

    http://nancyspoint.com/endocrine-therapy-guide-to-manage-aromatase-inhibitors/

  • JustaCanadianGirl
    JustaCanadianGirl Member Posts: 1
    edited March 2019

    Ok... I need help.... I have been on Exemestane since September, and Zoladex since May. On January 25th I started having pain in my elbow and its gotten progressively worse, moving down my forearm into my wrist and hand. I cannot grip anything, I get shooting pain, it hurts when I move it in certain ways, bent, straight whatever. Physio says it presents like tennis elbow, but I can't think of anything I've done repetitively.

    I am so happy to see other posts with similar issues!! I see my GP next week and my Onc April 3rd. Neither I feel will think there is a relation to my meds, so help me out with how I need to present this... I am willing to change meds if I need to, because I am getting very limited in what I can do with my right arm



  • faith-840
    faith-840 Member Posts: 926
    edited March 2019

    Hello, I lurk here on occasion since I'm not on aromisin, but I am on femara and I'm wondering about changing due to my SE's. It looks like a lot of your experiences are similar to mine, especially the thinning hair.. That's a problem for me too but I'm using a helmet with LED light therapy called IRestore and I really think it is helping my hair get thicker. Look for the thread called “thinning hair" and there are several women reporting success with it. One of the women there will tell you how to get the discount.It is not cheap to buy but they give a discount to cancer survivors and there's a six month money back guarantee for a refund. All you do is wear the helmet for 25 minutes a day every other day. It's not messy at all like Rogaine or some other serums.

    Did any of you feel better after switching from femara/letrozole to this aromisin? I have lots of joint and muscle pains as well as the thinning hair and awful dryness everywhere. Stomach issues too!

    Thanks for your help.

    Faith (in the future).

  • Bliss58
    Bliss58 Member Posts: 938
    edited March 2019

    Hi Justa and Faith. I'm going on 15 mos. on Exemestane and my previous trigger thumb with Letrozole around this time is now reappearing. My onc says I probably already had an injury to the thumb joint, but it didn't bother me until now taking these drugs. She is a believer that they exacerbate arthritis or areas of injury, but not sure she thinks the drugs cause new problems. I got a thumb splint I'm trying today with ice and Ibuprofin. The onc suggested a cortisone shot to my thumb, but they sure didn't help my knees! I also had the hair thinning with this drug after about 3-4 months of use, but now I've noticed it seems to have stopped, so that's good. All I know is when I stopped Letrozole for two weeks before starting Exemestane, my thumb stopped triggering and my knees felt great!

  • KimE
    KimE Member Posts: 34
    edited March 2019

    Hi Bliss, I had the cortisone shot to my thumb and it got rid of my trigger thumb.

    Hi JustaCanadianGirl, I also had the problem with my forearm. I wear a tennis elbow band on my forearm and it helps tremendously.

    The things we go through to survive!!! Shocked

  • Bliss58
    Bliss58 Member Posts: 938
    edited March 2019

    Hi KimE, thanks for sharing your success with cortisone to the thumb; very encouraging! I'll have to give it a try. And yes, the things we go through to survive! Ugh.

  • luwusu
    luwusu Member Posts: 18
    edited March 2019

    hi- im new to this thread. I began Exemestane about 1.5 years ago. side effects were somewhat gradual- the worst being the muscle/joint aches. They got so bad that 6 weeks ago I talked to my onc about going off Exemestane. She asked me to try four weeks of acupuncture before taking a break. I did it. No discernible improvement. I made the decision a few days ago to take a two month break from Exemestane. I talked to my oncologist today and she is okay with this. Right now, I feel giddy- like a kid starting summer vacation. I am really excited to feel better- maybe regain a bit of energy, lose at least some of the debilitating awfulness I’ve been feeling which makes it hard to move. I’ve felt 80 years old for the past year and I’m not 64. If I do begin to feel better during these two months off, I don’t know if I’ll be able able to make myself go back on- I don’t knowwhether the added small amount of protection will be worth feeling like crap for another 5-7 years. If anyone is interested I’ll keeep you posted on the next two months.

  • murfy
    murfy Member Posts: 259
    edited March 2019

    Just an update on how I've controlled my SEs over the last year. For hip pain, I'd half my dose (+heating pad and Aleve) for however long I needed; I took a 1 week vacay for urethritis and 10 days for trigger thumb and both went away and haven't come back; none of these adjustments resolved my DeQuervain's tenosynovitis, so went to orthopedist and got cortisone in wrist that resolved condition in 48hrs. Still have burning/dry eye and use artificial tears as needed. Currently pain-free and feeling fine with at least 4 more years to go!

  • bennybear
    bennybear Member Posts: 245
    edited March 2019

    Luwusu, I hear you, it is so hard to balance risks and benefits. I too am not sure if it’s worth it. I have lost 10% of my spine after three months on Anastrozole, then three months on Exemestane. And I had to push to get a new bone density test. So I will be carefully considering if it is worth it along with the more just annoying side effects.

    Murfy, had to google de Quervains, yikes hope it resolves, I have been having strange wrist issues, now I am wondering?

  • murfy
    murfy Member Posts: 259
    edited March 2019

    Wow, bennybear, are you taking any of those drugs to build bone? Is it painful? I was osteopenic at the beginning and am doing fosamax+calcium+D and looking forward to my bone density next autumn to see if it works.

  • bennybear
    bennybear Member Posts: 245
    edited March 2019

    Murfy, I started Fosamax in January. Also on calcium and d. It was quite a shock that I had lost so much bone so quickly even while on Fosamax for a couple of months. No pain but I did break my elbow in October which was. It just has me very worried about continuing the Exemestane. I will see what my oncologist thinks

  • luwusu
    luwusu Member Posts: 18
    edited April 2019

    I’ve now been off Exemestane for 16 days. My energy is better. My muscle aches are somewhat better. My mental outlook has hugely improved. I do love being off it. I’m sleeping better, too. In 6 weeks I’ll have a hard decision to mak

  • murfy
    murfy Member Posts: 259
    edited April 2019

    Luwusu, if you are HR-, why were you on an AI?

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