Aromasin--It's slowly killing me, I think

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dibel
dibel Member Posts: 161
Aromasin--It's slowly killing me, I think

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  • dibel
    dibel Member Posts: 161
    edited March 2010

    I think I've just about come to the end of the road with Aromasin.  This is what I switched to after taking Femara.  I would really like to hear from others on Aromasin to compare symptoms. 

    Mine are:

    Aching joints

    Intermittent joint pain that travels through my body...feel achy most of the time.

    Morning pain in my feet and ankles.  Its difficult to get walking.

    Morning fogginess that takes me until noon to come around.

    Vertigo.....a feeling of intermittent dizziness----feeling off balance a lot

    Fatigue.  I never took naps but now I must so I can get through the day.

    Mental fogginess.

    So ladies, do you have any of these symtoms?  I'm starting to evaluate whether this is really worth it.  I'd like my quality of life back. 

  • karen1956
    karen1956 Member Posts: 6,503
    edited March 2010

    Dibel....I was on AI's for 3 1/2 year and Aromasin for 2 1/2 years....saw my onc 2 weeks ago tomorrow and he gave me a reprieve from Aromasin for 2 months (yeah)....I was just plain old tired of all the side effects.....after 2 weeks, I'm not sure that I will go back on them when I see him again in mid May....I feel like I will just take my chances!!!  My side effects were joint pain, insomnia, depression, anxiety, GERD, swollen knuckes, tendonitis in wrists (had surgery on both wrists), memory, cognitive issues...thats all that I can think of right now...but I know there are more....since stopping two weeks ago, I feel like I have more mental clarity and feel so much more positive....joint pain is also better and I think so is insomnia.  I am 4 years since Dx (stage 3) and figure QOL has got to be worht something....I rather feel good for whatever time I have left, that life feeling like sh**....I'm 53 (will be 54 in May) and too young to feel like cr**....I've tried all 3 AI's as well as tamox....good luck to you.

  • dibel
    dibel Member Posts: 161
    edited March 2010

    Were you on the inhibitors for a total of 3.5 years? 

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited March 2010

    Can you take tamoxifen?

  • dibel
    dibel Member Posts: 161
    edited March 2010

    I haven't taken Tamoxifen.  My oncologist told me that Aromasin was like a Cadillac and Tamoxifen was like a Ford.  Interesting illustration.

  • Kindergarten
    Kindergarten Member Posts: 4,869
    edited March 2010

    Dear dibel!!!!! I will be on aromasin for 5 years in June. I am sure my onc wants me to stay on it in definitely since I had bi-lateral breast cancer and I had a single postivie node. I have had every side effect including the horrid weight gain, but I am slowly losing the weight now, new diet. Your onc is right, aromasin seems to be the best inhibitor out there right now.  I know it has kept me cancer free so far. However, I hated the side effects too and wanted to go off of it, but I am scared to do so. For the last 2 months I started taking the aromasin at night, I was under the impression that taking it in the morning was better, but I finally asked if it mattered what time of day you took it and the director of my study said taking it at night is just fine. DUH!!!! I waited way too long to ask this simple question, because since I have been taking it at night, I feel so much better!!!!  Ask your onc this question and see if it helps you, too. The weight gain will always be an issue, but I am so happy to be NED, that I will stay on it indefinitely if my onc recommends it. I sure hope this helps you, God bless you and keep the faith. Kathy

  • jude14
    jude14 Member Posts: 293
    edited March 2010

    Hi dibel....I too have been on all three of the AI's.  Been on femara the longest and like you everyday I say I cannot do this any longer.  I am thinking of taking a month or two off and seeing what happens in hope of some of the joint pain going and someway I can loose some of this horrible weight I have gained.  When you cannot walk or exercise and stay hungry all the time it is not easy to try to loose weight.  I take my pill at night and I have not noticed where it helps me like some people say it does them.  I would like to make it at least three years on these th ings but Dec. 1 seems along way off yet.  My bc surgery was in Aug of 2007 so if I could just make it to that date I would be happy.  If we are afraid to come off now what protection do we have coming off after 5 years?  I to feel at times like QOL is more important then quantity.  I am just afraid I am doing permanent damage and the rate I am going I will honestly be in a wheelchair if even alive at the end of 5 years.  I have no idea which way to go....I just keep taking the pill and saying ok one more day.....:(      God bless you in whatever you decide to do...I keep telling myself to take my faith and trust in the Lord and come off these pills because if it is meant to be I think it will be.  Prayers and Hugs to you as I know how you feel....jude14

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2010

       I do not think the aromasin is killing you, it just feels that way and I am sorry you are having so many aches and pains with it.  I was extremely lucky in that I did not have horrid SEs with it and also in my case it actually was being used as treatment rather than preventative....I was already Stage lV when it was prescribed for me, after doing tamox and arimidex.  It not only kept my cancer in remission, but it took my tumor markers down from the 500's all the way to 18.  For me it was a wonder drug, but we are all different in our response and side effects.  Alas, as everything it quit working after awhile.  Has your onco suggested anything to lessen the SEs?  I will say my prayers for you.  

  • debisongbird
    debisongbird Member Posts: 275
    edited April 2010

    I have all the side-effects you mentioned, but I try not to think about them. I think about how the Aromasin is keeping the cancer away!!! But, I know the side-effects are trying. For me the fatigue and appetite increase is awful. I'm as big as a boat, and I used to be slender. I want to exercise, but half thetime I am exhausted. But I have good days, and then I think, I'll diet, I'll do tai chi, I'll exercise, etc...you get the picture. And then I have bad days again. But, like I said, it's keeping me free of cancer, so I put up with the aches and pains. Good luck to you. The calcium, magnesium, D3 and B6 have helped tremendously with the muscle and bone pain.

  • dibel
    dibel Member Posts: 161
    edited April 2010

    To all,

    Yes, it seems like we all have the same symptoms.  I can deal with the joint pain because exercise really helps  plus I have 2 dogs that need walking.  What bothers me the most is the unsteadiness or mile type of vertigo that I have.  If I turn a certain way, it will strike.  Plus I have this foggy out of body feeling most of the time.  Finally feel better in the evening.  I talked with the Dr on Tuesday and he said that just about everyone complains of side effects.

    I also do a lot of nutritional therapies including Vit D3 and now I'm supplemnenting with  iodine.  Did you know there is now a connection between iodine depletion and breast cancer.  I did a 24 hour urine test to find that one out and yes, I was quite deficient.  The studies say that iodine kills breast cancer cells.  I think there is a thread on the alternative, complementary topic about this.

    Best to all---enjoy the weekend. 

  • mawhinney
    mawhinney Member Posts: 1,377
    edited April 2010

    I was on Arimidex for 13 months without problems and suddenly developed severe mouth and jaw sores. Took a 3 week break and then went on Aromasin for 9 months & developed bone pain and bent  & swollen fingers.  Had a bone density test the beginning of March and I now have osteoporosis with a high risk of a neck fracture & an increase risk of spine fracture.  Also found severe osteoarthritis in left hip.  Onc the AIs can be hard on the bones so he took me off all AIs and I started Tamoxifen 2 days ago. I have been taking Boniva plus Oscal with vit D, eat calcium rich foods, get pleanty of sunshine, and exercise. Frustrated and angry over the damage to my bones from the AIs.  Seeing a Bone and Joint specialist next week.

  • gemo
    gemo Member Posts: 612
    edited April 2010

    Just switched from Arimidex to Aromasin 2 weeks ago.  I havve had bone and joint pain for years so that is not a lot different but all I wanted to do today was sleep and eat!  I am going to try taking it at night instead of morning and see if it helps.

  • hipgranny
    hipgranny Member Posts: 5
    edited April 2010

    I will have been on Aromasin for three years in September.  I was on Femara about 6 months before switching. Femara was killing me.  When I switched to Aromasin, I felt much better within 3 weeks.  I still have some joint pain and don't have the stamina as before, but I take the pill everyday with the thought that I am one day closer to the end. I had osteoporosis before BC, so my bones have been a concern always.  I take Caltrate 600 + D twice a day, took Forteo injections daily for two years, & had an infusion of Reclast last year.  I am due a bone density test this month.  If my bones are worse, I am thinking of asking my oncologist about switching to Tamoxifen since it is not supposed to have such negative effects on bones.  Does anybody have any experience with taking Aromasin and switching to Tamoxifen?  Would I have to learn to deal with a whole new set of side effects?  Is this like going backwards?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2010

       Are you all premenopausal?  Tamoxifen is a premenopausal choice, isn't it? Arimidex, aromasin, and the other AIs post menopause....at least that is what I always thought.  I guess I was very lucky that I did so well on aromasin and did not really have any bad SEs with it, plus it took my CA27/29 all the way down to normal range which it never been after they discovered my cancer had returned. 

  • yarrowfern
    yarrowfern Member Posts: 24
    edited April 2010

    It is clear that not all the lovely ladies that have posted are premenopausal.  I am very happy that you are not having much in the way of SE but it is clear that these ladies are.  Your experience is not theirs.  My Mother is on aromasin and has lost  60% of her kidney function and suffers to even walk into a store.  While I am very happy that you are not having many problems, you seem a bit insensitive to what these other ladies are feeling...... 

    Ladies,   What ever you decide to do, I support.  Not all can go without side effects.  I truly understand quality of life.  If you can't live they why be here?  I choose to live!

  • karen1956
    karen1956 Member Posts: 6,503
    edited April 2010

    Marybe....tamox is for both pre and post menopausal women....AI's are only for post menopause....I've tried them all and had side effects with everyone....no joint pain with tamox, but awful GI problems....joint pain on all the AI's....CTS on Arimidex....tendonitis on Aromasin....joint pain worse of Arimidex...mental fogginess worse on Aromasin....QOL is an important issue for me.....for now I am enjoying the reprieve from AI's....need to get back to feeling good, both mentally and physically, then I will decide what route I want to take....go back on AI's or not....

  • JoieH
    JoieH Member Posts: 1
    edited November 2011

    I was diagnosed with Stage IIB Infiltrating Ductal carcinoma Breast cancer January 25th. I had double mastectomy February 25th. Lymph nodes were clear and clear margins. I started taking Femara and lasted 3 months. I couldn't get out of bed my body hurt so bad. Then I switched to Aromasin and now I have tendonitis and trigger finger in both hands. I am in so much pain that I can't even floss, wash my hair or anything. I am off the Aromasin and now taking tamoxifen. I am wondering if my tendonitis will get better now that I have stopped the Aromasin???? Has anyone had the tendonitis get better after discontinuing the drug?? Doctor says that I need surgery. I can't believe how these drugs can destroy our bodies. What will the side effects be from Tamoxifen??

  • pickle
    pickle Member Posts: 1,409
    edited November 2011

    Joeih, i also wonder what these drugs do to our bodies. i was on tamox for 2 years and they switched me to Aromasin 4 months ago. It took me 10 months to get used to tamoxifen and then the aches and pain settled down. Aromasin seems to be a whole different animal for me. While I can appreciate the others saying that they focus on the drugs keeping the cancer at bay...I feel my QOL is so diminished on Aromasin. My feet hurt so bad when I get up in the morning and my hands are getting more useless daily. My hips and back hurt so much at night that I can never get a good sleep amymore. I am not a complainer but these side efffects are really getting me down. I would take tamox over Aromasin anyday. The other thing that bothers me is when do we know if the aches and pains are from the drugs or the cancer returning. I am really at a crossroads and don't know whether to go back on tamox, get my aches and pains looked at with a scan or just suck it up for anither 3 friggin years. What to do...what to do?

  • Kaara
    Kaara Member Posts: 3,647
    edited November 2011

    I am meeting with my entire medical team prior to surgery next week to go over options for treatment once my surgery is complete.  Since I have very early stage bc and I am postmenopausal, I am sure that rads and Al's are going to be suggested.  I am over 70, have always had good quality of life, and I am absolutely certain that I do not want to take anything to change that, even if it means I risk a recurrance.  I am going to approach my aftercare with nutrition and supplementation, a plan which I already have in place to get myself in optimal condition for surgery.  My extensive research and soul searching has led me to this decision.

    Everyone struggles with this challenge, and everyone must make the choice that makes the most sense for them, as an individual, and that may not be the choice that their doctor recommends and prefers.   

  • charlottesmama
    charlottesmama Member Posts: 250
    edited November 2011

    Hi all. I started Aromasin about 2 months ago. I was diagnosed with BC almost a year ago. Very early, not aggressive, but big lump. Had a mastectomy on the affected breast and immediate reconstruction. Chemo before and after the surgery, then had a total hysterectomy. Whew!



    Doing great but suddenly have symptoms of Carpal Tunnel: thumb, index and middle fingers falling asleep at night. Fingers feel swollen and achey.



    Apparently that's a potential SE of Aromasin. It's happening so fast! I'm a pastry chef and can't afford to lose the strength in my hands. My hands are my livelihood! I try wearing the wrist cuffs at night, but they're damned uncomfortable. I end up tearing them off around 3AM. LOL!



    I question the QOL issue as well: What is my risk potential relative to my quality of life?

  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2011

    charlottesmama - dragonfly 1 had the same thing happen but they think it is late onset neuropathy.  Seems to be dissipating I believe.

  • Bonnie7
    Bonnie7 Member Posts: 57
    edited February 2020

    Hi girls,

    I just wanted to add something to this topic. I am of the mind that due to the potency of these tablets that they are most definitely not one size fits all and are not necessarily appropriate, for some, to be taken every day! My Surgeon was quite irked when I mentioned this before. Like all medications and supplements they have a cumulative affect on the body, I believe when the side effects become quite severe, your body is basically telling you...it's just too much!!!

    Perhaps a poor comparison, but Body builders who take these tablets too, pull back when they are off their steroid cycle and restart as necessary to keep estrogen low in the body.

    We are given very much standardized treatment for Breast Cancer when really it should be such an individualized holistic treatment, I fear this is where we fall down and feel compelled to do "as we are told"!

    I also take Aromasin every other day at present and when my side effects worsen I will cut back again.

    I hope this helps someone somewhat!

    So pleased we have the Site to support and share our different experiences!

    Big hugs to all! 😍



  • dtad
    dtad Member Posts: 2,323
    edited February 2020

    Bonnie...just want to let you know that this is a very old thread so you might not get the responses you want. Unfortunately all the symptoms you mentioned are common side effects of not only Aromasin, but all aromatase inhibitors. FYI some have found that changing the generic helps with the side effects. You didn't share your stats but IMO we all have to weigh the benefits vs the risks. Good luck and keep us posed...

  • lorreymom
    lorreymom Member Posts: 149
    edited February 2020

    I came here tonight because my bone pains are keeping me awake. I have been on exemestane (another aromatase inhibitor) for almost 5 years now. I have experienced all those side effects. They aren’t all the time. They are sporadic. I wonder why because I take the same pill, same dose, every night at same time. Exercise helps. I run everyday. But lately had to bump up my mileage, as the pains were coming back. It was working. But tonight I am very sore... whole body aches. Joint pain. I am on gabapentin too. It’s not helping tonigh.

    As for cumulative effects. That maybe true. But are there studies to support EOD treatment? Are there long term studies showing that taking a break gives you the same level of estrogen suppression? Are the risks of cancer returning higher with EOD or breaks? I take this pill to keep my cancer away. Before I mess with the dosage frequency, I would want to know the risks... from studies done. Are there any?

  • KIDI919
    KIDI919 Member Posts: 425
    edited February 2020

    Bonnie I agree with you. I don't think it should be a one size fits all. Probably just easier, cheaper etc.

  • Rhonda61
    Rhonda61 Member Posts: 2
    edited March 2020

    I've had an allergic reaction to all of the aromatase inhibitors. Each one (generic versions) give me hives and swelling of my lip after 3-4 weeks. I am now on the brand name Arimidex; been on it for 6 weeks with no hives, BUT now have horrible wrist pain (only 1 wrist). I've never had joint pain before - it's awful. I'm wearing a brace but it's not really helping. I'm going to stop taking it for a few weeks to see if the wrist pain goes away (want to make sure it's not something else). Anyone know how long it may take for symptoms to go away? I can't do this for 5 years. I can't even open a pill bottle or hook my bra w/ this pain. Ugh. Thanks for listening.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited March 2020
    Rhonda, I'm sorry you're having this trouble. I did Aromasin/Exemestane for almost six months and I also had a really hard time on it. I have since switched to Faslodex. About your wrist pain - I could be wrong but you might be getting a trigger finger problem from the AIs. Mine started out as wrist pain at the base of my thumb, but got really bad to the point where I couldn't even hold a cup or open doors anymore. Anyway, I think you should tell your Dr asap - in my case, it has been over 6 months since stopping Aromasin and I'm still trying to recover my hand function. I needed cortisone injections. Anyway, please just be careful with that side effect.


    Here is a thread which might be informative for you: https://community.breastcancer.org/forum/78/topics/872097?page=2#idx_5

    Best wishes! I hope things get better.

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