Doing Well on Aromatase Inhibitors (AIs)
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Re: Beginning AI- I started one week after radiation treatments ended. I take mine in the mornings, often on an empty stomach, with no problems at all.
My advice based on my own personal experience is, whenever you do begin taking it, to begin on a day you don't necessarily have to be anywhere. I took my first dose on a Saturday morning rather than a weekday morning because I was nervous about going to work and experiencing any dizziness since the bottle comes with that warning label on it. It turns out I did experience significant dizziness that first day, and a little less dizziness the next day. By the third day, which was a Monday, when I had to take it before work, I was fine and felt nothing. I was glad to have started it on a day I didn't have to be anywhere. Since then, I have been fortunate to feel just fine while taking it. I have been on it for exactly 9 months so far.
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thank you so much for answering my question!
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Thanks for all the positive replies! I will fear the AIs much less, although realizing that everyone is different. I am recovering well from surgery and awaiting my appointment with a RO. I had a positive node, so I think my hope of no radiation is for nothing. Oncotype test not back yet, so chemo is still a question mark.
At some point I will reach the AI phase. This is certainly a slow process. I finally just decided mentally to write off the year. It’s less stressful than wondering if I will be able to do this or that in August. Now if I can do something I will be pleasantly surprised
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Floral - Waiting for the Oncotype result to determine if chemo would be beneficial was the WORST! BS never mentioned chemo as a possibility until we discussed that tissue was being sent for the Oncotype test. Although my numbers were not low enough to clearly show no benefit, they were in the "grey" area - BS was ok with no chemo, which was ok with me as well. Here's hoping for a low Oncotype result.
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Hi everyone, long time since I've been on the forum, but am now 2+ years post surgery, and doing well. I had 4 rounds of chemo and 7 weeks of rads, and am now 18 months into Arimidex(Anastrazole). Personally I've been doing very well - thanks in part to the advice of many who came before me - which included adopting a mindset which looked at the positive benefits of AI treatment, and continuing study results which say that long term hormone therapy is having an impact. If taking an AI is going to improve the odds against a recurrence, I add it to the list of other things which are recommended like physical activity - 30 minutes of brisk walking or light exercise 5 times a week does seem to make a difference - and changes in lifestyle - better diet (nothing special, just healthier), lower body weight, no smoking (never did, that was easy) and less alcohol. (Yes, I am that person who still likes her wine and the occasional cocktail (mostly gin based because juniper berries are natural antioxidants - but that's a personal choice - gotta have some vices...) As for the side effects, early on it was mini hot flashes - which ended after a few months - and then muscle and joint pain. And again, sisters before me who were doing well said to exercise. And for me, that advice was spot on - if I am feeling stiff and sore I go right at it - stretch, move, tone. I am not a big gym person - I love walking, low impact 80's style aerobics and light weights. Other than that I don't feel older or tired or put upon. I feel blessed and fortunate that a medicine which is known to have long term benefits for my type of breast cancer fits into my lifestyle. I also don't stress on when I take it - I travel a lot on business and am in multiple time zones - I shoot for mornings - but nothing by the clock. As I had osteopenia, I take it with a daily Vitamin D supplement at the advice of my medical oncologist.
For those just starting the post-surgery/chemo/rads journey and moving onto an AI - do your homework before you sit with your med onco and read the results of the studies and clinical trials - so you can discuss the different types of AI available. The best patient is an educated patient. Please don't read magazine articles or online horror stories - people don't talk or write about good results online much. (it's kind of like the news - good stories don't get good ratings). Please do look at scientific literature and actual published results. Download the ASCO guidelines on adjuvant hormone therapy. For me, the anastrazole has become no different than my daily vitamins and meds for hypertension, a family condition I've had for decades.
We all come to start the journey from different places, and regardless of where the journey takes us, we share a common bond. Look to the good stories - and then pass them on. Wishing everyone peace, happiness and love.
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Wise words, Wildcolonial girl. Thank you on behalf of all the other readers of this topic.
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Yes, thank you Wildcolonialgirl! Just started the pills last week. Thank you for the positive vibes
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Hello everyone. I am scheduled to switch from Tamoxifen to AI. I don’t have major side effect from Tam other than hair loss, dryness, and fatigue later in the day. Just wondering if anyone switched from Tamo to AI and what your experience was like
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I began Letrozole about 3 months ago. I’m 59 yrs old and went thru menopause 10 yrs ago.
I feel alright, some stiffness but I experienced some of that for the past few years. I don’t think it’s worse now. I have noticed that I get a wave of heat occasionally, but it passes quickly. Headaches were more frequent when I first started taking it but that has stopped. I did notice vaginal dryness so my oncologist gave me the Estring, which is wonderful. Within 2 weeks, I felt normal again. I’ve gained weight but I won’t blame that on Letrozole......that’s my fault.
I stopped reading stuff on line because everything was soooo negative. It’s nice to hear how many of us are doing fine on these drugs.0 -
Hi ladies, for me making the decision to go on Anastrozole was tougher than the decision with doing a bilateral mastectomy.
After every thing we go through with surgery, rads or chemo then to add a hormone blocker that may have debilitating side effects, So Not Fair!
For myself I filled my prescription 6 weeks ago, kept reading researching reading more and felt absolutely petrified of possible years of suffering.
I am 8 weeks post bilateral mastectomy with TE, and axillary dissection.
My last drain was in for seven weeks, no infection. No Seroma I feel lucky😁
I started meds 2 days ago, what helped me to make my decision, if it’s unbearable I will come off it. But I will give it my best shot!
Sending positive vibe
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Hi Calendar Girl,
I have been on Anastrozole for a month so far and I feel fine. I drink about 8 glasses of water a day, walk a lot and live my life. The TE bugs me more at this point.
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Hi Calendar Girl--I have been on letrozole for 2 years and 2 months and other than some initial hair shedding and stiff knees in the am that clear with moving around am doing fine with it--most annoying is the sleep distubances- I can fall asleep for a couple hours then wake up and toss and turn and continue to wake every couple hours -so am tired a lot-but is small price to pay for a 40+ percent reduction risk for recurrence---which would have far greater unpleasant effects----so keep a positive attitude--you made it thru many battles to get to this point---your life is still here-go for it -my life has returned to 95 percent normal--hugs to you,Kaylie--ps-am approaching 3 years out in June and doing fine!
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hi Seawell- wish I could use the estring--used it off and on for years before dx and yes very helpful--I know the recent research does show an initial rise in estrogen levels that then decreases again--so is considered safe for some--My very up to date onco has ruled it out for me as am at high risk for recurrence--2cm tumor with 2/2 positive nodes--grade 3 and a high -45- oncotype score -so even with the present data -is a no-no for me-- damn---I do not have any urinary symptoms never have,but do have vaginal dryness--Onc recommended coconut oil for sex lubrication-not water or silicone based so is more effective--your hair looks great by the way- I also coldcapped--Penguin-and saved 75-80 percent! best to you-Kaylie/Candace
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hello kaylie..... I had oncoscore of 30 ...and this week I’ll get my genetic test results. I might also be high risk for reoccurrence but for now my oncologist said <10% ...but we all know there are no promises in life. I was miserable with vag dryness.....just sitting was uncomfortable 😕so I’m willing to take a small risk. Regarding vag lubrication during sex; I work with the best urologists in the Bay Area and he highly recommends EVOO. Just need a drop or two. It works great. Coconut oil is good too I’ve heard. My gynecologist recommended Luvena (I found it on Amazon) and it adds relief as well.
My new problem is extreme dry eyes. I wake up in the middle of the night and have to peel my eyelids open. 🤣 might need some lubrication there too!
Sending you hugs. 💕0 -
Hey Floral,
I too am awaiting Oncotype. I see your post was a few weeks ago. Have you received your results yet?
My surgery was the 27th and saw my MO on the 9th with the tissue to be sent shortly thereafter. She hoped for results by the end of the month. I too will have to take some kind of medication which I am already dreading. I have not gone through menopause yet. Just before my diagnosis in December, my PCP ran tests. They indicated Not.Even.Close. I also had a positive node, but the tumor board at my hospital said the new protocol is no if <4. I will still meed with an RO to discuss, but only after the chemo ? is answered. I have been in school working on my degree for so long, test scores are a big deal. This is the first time I am hoping for a low test score!
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Floral and OnlyGirl: Hoping your oncotype scores are low! Waiting for the results of this test were the most stressful part of treatment.
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Anyone taking Femera? Onco called today to say that a script was called in to pharmacy. I was suppose to see him yesterday but appt was cancelled due to virus. They were only seeing chemo pts. I did want to talk to him( maybe ok to start with an every other day dose?) but the phone call came as a surprise and I didn't have my notebook with my ?. ( can't seem to remember a darn thing) So I guess I will start and see what happens.
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I was not thrilled to be prescribed Letrozole, but I also know that if I didn't take it and had a recurrence I would kick myself. So I started taking it 3 weeks ago and have a very little side effects - just a few hot flashes.
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I assume everyone taking AI's is also taking calcium supplements to ward off bone loss. I find I can't take calcium without becoming very constipated. I take calcium citrate, eat lots of fiber, take fiber supplements, drink tons of water, etc. I break up the dosing so that I don't take more than 250mm at a time. Nothing seems to make much difference. My serum calcium (9.9) is right at the high normal limit and my vitamin D is 54. Maybe for me these supplements are overkill?
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wtfwiththeusername My MO has guided everything about maintaining my bone health. What type and how much calcium, and how much Vitamin D, all having to do with the absorbability and availability of different compounds. (Ca Citrate vs Ca Carbonate, and adding Vitamin D helps with absorption, etc.) He tested my Vitamin D levels before giving me those instructions. It's true that AI's usually lower bone density. Therefore, I was given a baseline DEXAScan before starting my AI. Since it showed osteopenia, my MO has me on Zometa infusions 2x a year, as the expectation in my case is that Ca + Vitamin D is not enough of a plan; a bisphosphonate is also necessary.
Zoladex/Zometa gives added protection against bone mets, as well as supporting bone density, so it's one choice (among many bone drug options) for women who are on AI's. I would ask MO specifics about how he/she makes recommendations, and ask a lot of questions. My MO is going to order a new DEXA Scan after 2 years, and see how my bone density is. That medication makes me feel slightly icky for just one day after each infusion, but that's it, no other problems, and it's just every six months, so no big deal....
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seawell- I've gotten dry eye since starting the AI. Yes one more dry area! I use Refresh drops, I'd say daily but I'd be lying. Eye Dr said 2x a day, until I see him again in May (1 yr). I have good intentions, the drops are right next to my bed, but some days I'm better than others. They're OTC and although not really cheap, they last quite a while. Best of luck.
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CindyNY....thanks for letting me know that you’re experiencing dry eye too. I haven’t heard any women talk about it as a SE but I knew I wasn’t imagining it. I had dry eye before but now it’s much more intense. My appointment with my ophthalmologist was cancelled due to covid 19 but I’ll try using Refresh...thank you! I consider dry eye to be a minor annoyance and am grateful that we have a drug that will greatly reduce our chance of reoccurrence. Stay healthy everyone and keep focusing on the positive.
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KIDI1919, I am taking Femara. No serious SEs -- switched from generic letrozole because of blistering on my hands (from generic fillers, maybe?). For me, it's been much easier to deal with than anastrazole.
In response to dry eye mentions, I had that with anastrazole -- strangely, only one eye. Not as much of a problem on Femara. I still use drops occasionally. Dealing with eye "floaters," but that was happening before starting the AIs, and is age-related (58).
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Also have dry eyes & also dry mouth from AIs. Eyes: use Systane Complete lubricating drops 2x daily (as recommended at Dec 2018 eye exam). Mouth: Use the generic brand of Biotene, also 2x daily (as recommended at one of my 2019 dental visits).
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After 3 months on letrozole, I started to develop severe leg pains. Switched to anastrozole and that helped immensely. In fact I no longer take any Tylenol or Motrin for pain
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GoldensRBest - Nice to hear you had a successful switch. From your screen name, sounds like you may have some goldens in your life. There is a topic "dogs, dogs, dogs" on here & would love to see any pics you wish to share. I think dogs are loving having their humans home during these times.
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CeliaC -We have 3 Goldens and they are my mental health therapy in every way!
Bella is almost 10, Gamble is 8 and her biological granddaughter, Mariah is 1 1/2 yrs.
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CeliaC -We have 3 Goldens and they are my mental health therapy in every way!
Bella is almost 10, Gamble is 8 and her biological granddaughter, Mariah is 1 1/2 yrs.
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GoldensRBest - 3 Goldens, Wow! They are beautiful and am sure they are wonderful company and therapy. Thanks for the pic. Sending belly rubs & head pats all around.
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GoldensRBest - Beautiful doggies; thanks for sharing!
We have a gorgeous Aussie/cattle dog mix and she is the sweetest, most comforting companion, and an excuse to get out for a walk in the fresh air as well.
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