Doing Well on Aromatase Inhibitors (AIs)
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best wishes, Magari, please do let us know how you are doing. Lisa
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I don't have a question I just want to share my tamoxifen experience so far. Overall it's been not too bad. Sometimes I worry about what it could be doing to me internally. My husband affectionally calls it Toxic Fin which I find amusing. Since my cancer was so hormone loving I had to stop taking the pill after taking it for 20 years. I actually had 2 normal periods after going off the pill but have not had one since starting radiation in June. Not getting a period and suddenly being deep into menopause has not been as traumatic as I thought it could be. It is kind of nice not having to deal with the PMS and blood.
I started the Tamoxifen about 2 months ago the first obvious side effect was nausea and stomach discomfort. Initially I took 20mgs in the morning. I switched to taking it in the evening which helped with the nausea but I started to have difficulty sleeping due to anxiety. I then decided to try halving my dosage to 10 mgs in AM and PM. My anxiety decreased and my sleep improved with the split dosage. I have not consulted my doctor about this. I suspect he will not be thrilled but this solution will help me maintain my quality of life. I have not noticed other side effects. I have had some fatigue but this may be post radiation fatigue. I still have stomach pain but I eat well. With all the changes I am going through it’s hard to know what’s really going on (I have skipped dosages to rule out side effects).
Overall it’s not been that bad. I can live with the side effects. I am very thankful my cancer was caught early. I am terrified of Mets and am willing to take this medication to help prevent it.
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Hi Amybb - you might want to have your Dr test your FSH level to see if you are truly menopausal and if Tamoxifen is still right for you? I thought it was usually prescribed for pre-menopausal women. Not that the AIs are a walk in the park - but they block your body's use of other/non-ovary produced estrogen that's still there to devil us.
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Today is my first day on Aromasin. Wish me luck!!
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Annie60 - LUCK to you!
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Thank you Lanne. I will definitely have that discussion with my doctor. The AIs scare me because of the bone density issues. I have a very physical job and am afraid of breaking something. I hope to be working for another 15 years or so. I was having normal periods until my diagnosis but I was taking birth control pills. I am not entirely sure what’s going on. My radiation oncologist thinks I’m peri-menopausal but who really knows. Bloodwork I guess is the only way to know
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Amybb - have the same concern as my job is also very physical but being very physical tends to give you strong bones so hopefully it will all even out. Good Luck
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Thank you GiddyupGirl! That’s a great perspective.
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Hi again Amybb,
When I started AIs (Letrozole), my MO had me get a baseline bone scan, and I get Zometa infusions twice a year, for 3 years, as protection against bone loss that AIs can cause. Zometa is also showing that i works against cancer recurrence, too, so it's a double win. I've not had any problems with the infusions - with blood work and the infusion, it's only a couple of hours.
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Same here ---Zometa infusion every 6 months. Protects against bone mets plus protecting against bone loss. Age 62 now, and osteopenia diagnosed on a DEXAScan before starting my AI. I feel as though I have the flu the day after my Zometa infusion--am a bit sleepy and achey, but it's for just one day, and then I'm fine again.
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Thank you all. My MO is letting me have a break from tamoxifen due to tummy trouble. My protein was a bit low in my blood. I may be starting on something else. It’s great to learn from you all.
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So far, so good. I have not had any SE's while on Aromasin except morning stiffness which is helped by walking every morning. After my MO calling me the poster child for SE's during AC and taxol, (still dealing with severe neuropathy,) I am praying I stay SE free. I would really like to get back to living and not just existing.
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I am so glad to find out my recent DEXA scan shows great improvement of my overall bone density, it was borderline osteopenia -1.1 last April and now it is 0.6. I have been on Aromasin and OS for more than 2 years now, and I am not on any kind of bisphosphonates. High dose of Clacium and Vit D3, Vit K2, magnesium, zinc and a lot of weight bearing exericexes work great for me!
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Stephilosophy00, just curious how much calcium etc. to you take? I have osteoporosis and osteopenia. I had a Reclast infusion earlier this year and currently take 1200mg of Calcium, 3,600 IU of Vitamin D, and 400mg of Magnesium daily. I wonder if I am doing enough and am curious as to what others are taking.
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Hi Legomaster225, I take 1200 mg calcium (Citracal slow release), 6000iu Vit D3 (to keep my Vit D level above 60), 600mg vit K2 (full spectrum brand), 250mg magnesium and 50mg zinc. I take them at separate time because calcium can affect how your body absorbs iron, zinc and magnesium.
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Thanks Stephilosophy. I'm going to ask my MO about the Vitamin D. I have not have that level checked in a few years. I usually take my aromasin in the morning, calcium and vitamin D after work and the magnesium at night because it helps me sleep. I started the magnesium when I was on tamoxifen because I was getting crazy leg/foot cramps at night. I kept up with it when I switched to aromasin because I found it helped me sleep better. I do need to up my exercise though. I walk a lot but that is not going to do it.
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i've tried all 3 AI's. settled on femara. just over 4 years now. i worked EVERY single day during chemo and radiation, so at one time i was one tough broad. the AI has kicked my a**. arthritis in my hands and knees, hot flashes have increased and night sweats are horrid. i cry at everything and have deep bone and muscle pain. i was thrown into osteoporosis 2 years into the AI treatment, but have been able to step back down to osteopenia through exercise, vitD3 and calcium. i push through 3-4 miles of power walking a day.......i've decided to stop the femara. my question is this....has anyone stopped and did the side effects improve/less and how long did that take? thanks in advance..........i can honestly say that i would rather take my chances on BC again vs the quality of life that i am currently living.
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Has anyone experienced dizziness on Arimdex? I'm talking hang on to the wall or something or you will hit the floor. My MO is having me take a break for a week to see if Arimdex is the cause. I really hope not. I was doing really well on it - no real noticeable SE's.
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Annie60 I have never had dizziness while on my AI, but who knows, anything seems possible, for sure. I HAVE had vertigo twice, and it was horrible both times, and both times were previous to being on an AI. First time, I was put on a medication to subdue the symptoms, which made me sleepy---something like an antihistamine to settle seasickness. The dizziness subsided after 2-3 weeks. The second time, I was cured after a couple of days of doing the famous 'maneuvers' (Epley and Semont) which can help if it happens to be benign paroxysmal positional vertigo (inner ear dislodging of small crystals; more commonly happens as we age). I'm assuming that this possibility, and also the usual simpler things like dehydration, are all ruled out as the cause of your dizziness. So sorry about this awful side effect!
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Annie60 - yes, I have experienced extreme dizziness on Arimidex (anastrozole). My SEs seems to come and go but I still get occasionall dizziness that also makes me have to hang on to something.
MJ
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Yes, i have been on Arimidex for 2 months now. 10-12 times a day/night, dizziness followed by drenching sweats. at night, I must sleep through the dizziness and just awake to sweats and wet jammies. Fortunatelu, I fall right back to sleep. During the day, I quickly find a chair or wall to lean on. If I am driving, I pull over to the side of the road. I have never actually passed out, but boy, it feels like I might.
Hoping this SE abates. Other than that, i have some soreness in my hands and am still tired all the time. Trying to get more night sweats, I mean, sleep.
Oh, when most people ask how I am doing I say fine. . . Especially if I know they really don’t want to know the details.
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Haliday,
That amount of dizziness is scary and possibly dangerous if it happens while driving. Have you talked to your oncologist about trying another AI? I would if it were me.
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I have been off Anastrozole since Tuesday. The dizziness has stopped. I will start back on Tuesday to see if the dizziness starts back or if I just let myself get dehydrated - I spent four days forgetting I had this mess and wonder if this caused it. I can't live with this type of dizziness. I can't function. If it comes back, I'll try something else.
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The MO switched me from Arimidex to femara. Hopefully, I won't feel like I'm on the tilt-a-whirl at the fair!
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Hope the Femara works well for you! I'll be starting it in a week, too.
Just tried Aromasin for a month and hot flashes were more intense than on Arimidex, plus I gained about 5-6 pounds despite a few days of wooziness when I barely ate anything. On the plus side, I think my libido woke up a bit....
It's challenging to figure out which AI results in the most acceptable batch of side effects. But I'm determined to do so!
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Started anastrozole 14 days ago. At first took it at night, then switched to AM. Thinking of going back to night. Had a few hot flashes, nothing major, and I'm pretty sure it's elevating my BP some. But exercise and meditation may help that too. So far nothing major.
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So far I'm doing fairly well on Letrozole/femara. I'm sleeping a lot better which was non existent when I was on tamoxifen. I was just wondering if anyone has felt jittery on it? I feel like an anxiousness/buzzy feeling lately, but not anxiety/worry if ya know what I mean. My Oncology pharmacists haven't said much about it. Just wondering if anyone else has felt this way as a side effect.
Thanks
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It seems like this thread got off topic some where people who are not doing well are contributing. I would say I'm doing well. I started femara/letrozole 12 days ago. I am 43 and also on lupron for ovarian suppression since april, which caused me bad depression/anxiety. I was very worried AIs would make my depression, anxiety, or insomnia worse. The first night i did not sleep and was very upset the next day. HOWEVER since then, since calming down some, nothing much has happened. Insomnia is not worse. Depression/anxiety comes and goes but I would not say it has changed since starting. No joint pain whatsoever (i hear for some it comes later). A few minor hot flashes. My energy seems to be up the last 3 days but likely that is just the happiness of ending radiation soon. Or maybe this godforsaken cymbalta is doing something at last.
Nobody was more scared than me. This was the last new hurdle in treatment, and I am past it. It might just be fine.
I don't come back here to read much because i find it upsetting. But you hear that people never post when they don't have problems, only when they do.
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I was diagnosed in 2017 with slightly er+, then oncotype had me er- breast cancer in which up to this point i had been taking tamoxifen for. However on the 4th of this month i had to undergo a complete hysterectomy with removal of my ovaries due to a large and thank god non cancerous mass. My medical oncologist had me discontinue tamoxifen a couple weeks prior to surgery.
Thank you for sharing your experiences with your medications. i will meeting with my medical oncologist to go over what medication she wants for me to take now that i'm officially menopausal. I hoping once we get one figured out that there wont be too many side effects. My biggest worry is bone issues since osteoporosis runs in my family and i had a horrible time with bone pain when given neulasta after my chemo.
There's always horror stories on boards so it is nice to read some positive feedback on what i could expect. Keep fighting strong and i will update when i can and thank you ladies
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Started Anastrazole (Accord brand) in March 2019. Teva brand (due to unavability of Accord my usual pharmacy) since August 2019.
Thanks to others' postings, I am able to find remedies to any side effects, which are now mostly under control, thank goodness.
For instance, side effect: stiff joints; remedy: exercise and water. If I don't do something every day, I am stiff, especially since I have a desk job. If my finger tips are wrinkly, I'm dehydrated. Time to drink more fluids.
Brain fog/delayed answers: ashwagandha (https://www.healthline.com/nutrition/12-proven-ashwagandha-benefits#section6) and other great uses.
Hot flashes. I am DES exposed so hot flashes have been an issue all my life. So having to stop HRT and having DMX really caused constant and severe hot flashes/night sweats. Acupuncture and Chinese herbs helped but insurance doesn't cover that so oxybutynin has been great for me. https://www.breastcancer.org/research-news/oxybutynin-helps-ease-hot-flashes
Good luck to all and thank you for all the input and suggestions!
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