Doing Well on Aromatase Inhibitors (AIs)
I read a suggestion that someone should start a topic for women who are NOT experiencing severe SEs while taking Arimidex, Femara, or Aromasin. I'm about to start taking Arimidex and when I read about the potential SEs I get discouraged. Maybe others would also like to hear about positive experiences. We would love to hear from you!
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OK, I have been on femara for 5 years so far. I am to continue at least another 2-3 years, maybe more.
I have had SEs, not saying that it has been entirely without drawbacks, but the main SE is that I am still alive after a pretty grim DX.
I have had no weight gain or serious complications. My joints sometimes ache, especially in my feet, and it is annoying, but not so bad that I can't deal with it. Eating a healthy diet and getting enough exercise seem to counter-act most of the SEs I have experienced. It also helps me to focus on the things I want and need to do, instead of focusing on, for example, achy feet. It does mean that I have had to give up wearing heels. I love shoes, so that is a bit sad. But life can be enjoyed in flats as well
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Momine - thank you for sharing. Your perspective, positivity, and helpful suggestions provide hope and inspiration.
Blessings!
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Just remember, if you start experiencing SE's, there are other drugs. I started out on Arimidex, but couldn't handle the side effects. Changed to Aromasin and things got much better. There are still side effects, but nothing I can't handle. So don't get discouraged if the first one doesn't work out. Just change to another one and KEEP FIGHTING !
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I did 5 years of Arimidex and was fine on it. I was a little achy & hot flashy at first, but just kept moving (and changed the wardrobe some). I'd say it took about 6 months before my body adjusted and I felt pretty much 'normal". I'd say that exercise is the absolute best thing to deal with any achiness, keep the bones in good of shape as possible, and improve overall health and mood too.
I felt lucky to be able to take an anti-hormonal & have the chance to take something on a long term basis that would reduce my risk of ever having to deal with cancer again!
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My worst SE thus far has been the combination of slower metabolism and increased appetite. Pain & stiffness are pretty minor (comparable to arthritis I was already developing); no hot flashes, just a little fleeting mild warmth that a ceiling fan will take care of; my hair is thinning, but no more so than before bc. Had a trigger thumb but a shot took care of it (and I had one on the other hand a decade earlier). I was osteopenic before starting letrozole, and have had a Zometa and a Prolia treatment since then—only way to find out if letrozole harmed my bones is to wait for my next density scan in Nov. (and if my osteopenia hasn’t worsened, no way to tell if it was the bone treatments working or the letrozole not being as harmful to my bones).
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I've been on Aromasin and Tamoxifen for 5 1/2 years (planning to stay on until I reach the 10 year mark). Have had some joint issues on Armomasin and hot flashes on Tamoxifen (those are lessening a lot now). No way would I give up this protection because of a few annoying SEs! Best wishes, odds are you will be fine on the medicine.
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Glad to see this tread. Was wondering about those who haven't experienced SE's and those who might have used strategies that minimize certain types of SE's. Haven't yet met with MO but have been told with ER+/PR+ 100%, AI's are crucial to prevent systemic recurrence. Arimidex mentioned as likely med.
I have concern because of a pre-existing mood disorder. I've extremely stable for a long, long time, with one medication (a med typically used for epilepsy that stabilizes mood) but typical antidepressants, trigger problems for me.
- Have any folks with major depression, esp. BP 2 depression, come through without SE's. Was this serendipitous?Are there any steps you took to minimize mood SE's?
- In the hormonal therapy comparison chart, only one med —not an AI but Tamoxifen – is listed with mood or depression SE's. Are those with depression more vulnerable to mood SE's or so some experience mood SE's but not enough folks that it's listed in the comparison chart?
- Did any of you see a psychopharmacologist or other specialist for consult to help with choice of hormonal medication **or** for protective strategies (meds or otherwise)?
- Any complementary techniques help?
I have pre-existing problems with joint and orthopedic pain, especially arthritis in knee and some related issues with spine (stenosis and disc problems).
- Are those with pre-existing joint issues more susceptible to joint SE's and I should ask about back stenosis and related disc issues.
- I believe there are approaches to try to prevent osteoporosis.
- Any approaches that seem to protect joints (for those with arthritis) and head off problems?
I'd appreciate any insights.
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* do bone building exercises; walk, run, dance (things that pound or bones) and lift some light weights
* extra calcium (with vitamin D)
* a serving of dried plums (ie prunes) a day can actually build bones
* Eat a variety of calcium rich foods. Here is a list of the top ten:
- 1) Milk. 1 cup: 300 mg (30% DV)
- 2) Kale (cooked) 1 cup: 245 mg (24% DV)
- 3) Sardines (with bones) 2 ounces: 217 mg (21% DV)
- 4) Yogurt 6 oz: 300 mg (30% DV)
- 5) Broccoli. 1 ½ cup cooked: 93 mg (9% DV)
- 6) Watercress. 1 cup: 41 mg (4% DV)
- 7) Cheese. 1 oz: 224 mg (22% DV)
- 8) Bok Choy.
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This is very helpful. Thanks.
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18 months on Tamoxifen and almost 7 months now on Femera & doing OK! I definitely notice more SE's on Femera when compared to Tamoxifen (more trouble falling asleep, hair thinning and joint achiness), but nothing that is over whelming.
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Thank you one and all for continuing to share your experiences and offering helpful suggestions as we navigate our way through AIs. I'm encouraged and hopeful.
Happy Monday and blessings to all.
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I'm glad that I found this thread as well. I had been reading about all of the negatives.... I meet with my MO may 26th to discuss AIs. Being only 3%ER + and PR-, I'm willing to try them but not sure how much benefit they will be. Every little bit helps as far as I'm concerned!
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On anastrozole (arimidex) for the last 3+ years, started two weeks before radiation. I am doing quite well on this drug and have no major side effects to report apart from increasing osteopenia that I do not feel. Started Prolia a year ago and had two injections so far.
I exercise 4-5 times a week and take vit D3 (no calcium. ) Plan to continue on anastrozole as long as the docs want me on it.
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I did 5 years of AIs and was just fine. However, I do think the key is to exercise, which I did religiously. I do endurance cycling to stay fit, so did not lose muscle tone. I did not gain weight either.
I ended with normal bone density. One think I did was add jogging into the mix, which I normally do 2-3x per week. I ski in the winter when the snow is good....just love Nordic skiing.
I did have some achiness, which got worse towards the very end. I remember one ski trip with a blister on one foot and the opposite hip hurting!!! I did 8 miles anyway.
Like Ruth, I make sure I get enough calcium and Vitamin D, necessary for these northern climes.
I am glad I was able to have AIs as a treatment option. I also was apprehensive when I took that first pill. But amazingly, all was more than OK. I finished up 2 years ago, and celebrated the end of treatment. Good luck. - Claire
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muska- I'm glad to hear you're doing well, I'm going to start Prolia in June so I'm encouraged that the injections are going well for you too. I know regular exercise is an important component to our wellness plans. You may want to ask your MO about also taking calcium supplements. I take 1200 mg of calcium citrate (500 with vitamin D3) 2x a day. My Gyn also upped my Viamind D3 to a totalof 5000 iu a day for my borderline osteopenia.
Claire - congrats on completing your AI treatment. I'm noticing a recurring theme that the women who are able to exercise regularly seem to do better. Thanks for sharing.
Ruth- we're on a lot of threads together. I always learn so much from your comments. I'm going to start eating prunes!
Can't address everyone individually otherwise this post would be way too long. Just know how much your positive attitudes are an inspiration.You offer hope, which for me, is the greatest gift of all.
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I am not taking any calcium for two reasons: first, I have kidney stones and have to be mindful of extra calcium, and second, there has been some research showing calcium might impact blood vessels negatively, so my doc recommended I eat well and the amount of calcium I digest with food should be enough. They have monitored my calcium levels closely since I started Prolia and I have remained in the normal range without calcium supplements.
Editing to add link to one of many recent calcium studies: Calcium Supplementation Study
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muska - thank you for this information!
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If you want some exercise buddies, check out the Let's Post Our Daily Exercise thread on the Fitness Forum. A great group of ladies at all stages of treatment and beyond, and all fitness levels too. It's a fun place to hang out, plus it makes you more likely to exercise when you are accountable
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Hi Butterfly,
Thank you for creating this positive, and hopeful topic! It's just what I was looking for, now that I had to stop tamoxifen (on for 14 months) for uterine issues. My doctor suggested Arimidex as a replacement.
Is anyone familiar with the advantages of using the Arimidex brand over a generic? When my maternal aunt had BC 20 years ago, she was able to take the actual name brand (Nolvadex) and NEVER had a side effect. I know it may be wishful thinking for me to assume the Arimidex brand, and not a generic, could be better tolerated.
Does anyone get their prescription by mail from Astra Zeneca's facility in Florida? I think it may still be available.
I can't tell you how great it is to read about those of you who are doing well on the drug. Appreciate any advice.
Thanks so much.
JaneyK
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JaneyK - I had read on other sites and this site as well about name brand Armidex and generic anastrozole. This is what I learned. Some women who were on name brand Arimidex and switched to generic claim they have more side effects. Some have written that they do better with the generic from the manufacturer Teva and not from the manufacturer Accord. From what I have read the differences are in the fillers. I am going to try the name brand first from Arimidex direct through Eagle pharmacy. It is out of pocket and more expensive for me than generic. However, if there's even a slight chance there may be less side effects I'm going for name brand. It's $30 for a thirty day supply and $90 for ninety days. I'm going with 30 days to see how I do. This is anecdotal data but so many women have seen differences to dismiss it as being totally invalid. I'd be interested in what others think.
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Those of us on Medicare Part D must pay outrageous amounts if we want the brand-name original version of the AI we’re prescribed, because very few if any Part D carriers even have them in their formularies. If I could have gotten Femara for $30/mo. I would have jumped at the chance. It would have been $700-900/mo from a U.S. pharmacy, and I paid $588 for 3 months’ worth via CanadaDrugs.com. I have found that Roxane’s version had the mildest SEs (and the fewest inactive ingredients—no dyes or coatings), then Femara, then Teva. Unfortunately, all my pharmacist can get now is Accord—and the CVS and Walgreen’s can’t even promise me that (“you get what we get” comes their reply).
I ameliorate the SEs by taking my letrozole at bedtime, along with two arthritis-formula acetaminophen to hold off pain, and 3 mg. melatonin and usually .25 or .5 mg. Xanax to help combat insomnia. I run the ceiling fan in the bedroom to hold off warm spells. And I take 200mg. of celecoxib (generic Celebrex) in the morning.
I have been on maintenance therapy ever since I had PPD 32 years ago. One of the advantages of an AI over Tamoxifen is that most antidepressants do not interact with AIs. And since antidepressants—especially SSRI/SNRI/SDRI types—work differently for different patients and must be tried out before finding one that works, that’s a huge advantage. I have been lucky to be able to take Wellbutrin (or bupropion, its generic) since 1999, and it’s fine with letrozole. Had I gone on Tamoxifen instead, I’d have had to switch to an antidepressant that isn’t contraindicated, and—as first occurred back in 1985 with tricyclics and eventually Desyrel—would have been thrown back into the “trial & error” pool of allowable antidepressants.
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I'm taking Femara, and I'm wondering how lon after starting AI do people nice side effects.
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Probably depends on your estrogen levels before starting an AI, and therefore how precipitous the drop in estrogen thereafter. And different people metabolize drugs at different rates. It’s pretty much a crapshoot, but the further out past menopause you are, the more gradual the appearance of SEs should logically be. What complicates matters is that for those of us in our 60s & 70s, other symptoms of aging—such as osteoarthritis and slow metabolism—begin to appear & accelerate, and it’s hard to attribute how much of that is the AI vs. how much to the gradual and natural reduction in estrogen production. It seems to be especially tough on women who recently went through chemopause or had their ovaries removed—the double-whammy of relatively sudden deprivation of both ovarian-produced estrogen and that converted by aromatase from androgens. I think the more used to estrogen deprivation you are, the easier a time you’ll have. But your mileage may vary.
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did 2 1/2 years of tamoxifen...now 5 years on letrozole....my body has been on a slow simmer for as many years...ceiling fan, Frogg Togg Chilly Sport scarf and whole new wardrobe consisting of layers has kept me going...also take the letrozole at night. It helps. Walk between 1 1/2 and 3 miles a day. Gives me more energy, makes me less grumpy and less stiff. Absolutely will not take calcium for same reasons as muska. AND, evidence is growing that the vascular system can collect the calcium deposits and make the vessels brittle...no one wants that because the rupture of the tiny vessels can cause clots and we know what clots can cause.. http
/www.webmd.com/osteoporosis/calcium-suppleme...i eat calcium rich foods and keep my fingers crossed.
Got my script for my bone density test today...will make appointment...but I doubt I will do anything even if I fail the test. Did Zometa infusions a few years ago and that's that.
Despite being on a cocktail of pain meds for Ehlers Danos, I can't say one way or another whether the discomfort I feel can be partially attributed to the letrozole. What i can though say with certainty is...for most days, I feel GREAT. Getting to feeling great was a process and I worked very closely with a team of doctors to get that way....and finally...good shoes. I wear mostly European walking shoes and they make the difference between thinking clearly or not...if your feet hurt...you can't think straight.
For those of you who are frightened about the thought of side effects, please understand that you must treat yourself gently and find a team of doctors who will work with you. I am blessed because I have a great team who truly want me to feel well and if and when I don't, they show as much patience in me as I do in them. Sooo...good luck!
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I swear by Finn Comfort walking shoes, especially the rocker-sole ones. Also Clark's Unstructured line, Vionic for sandals and (don't laugh) Hush Puppies for pumps (rubber soles, not-quite-flats but dressy enough). Alegria for clogs, because they have great removable orthotic insoles. Used to wear Mephistos (nearly 20 yrs) before my bunion & bunionette got so big that all their closed shoes were too narrow in the toe box. For sneakers, Hoka Conquest. Crazy-expensive (but not as expensive as the Finn Comforts or Mephistos), but like walking on marshmallows. Have one pair of Stuart Weitzman kitten-heel strappy gold sandals but wear them maybe once a year, an hour or two at a time.
Alegrias are usually under $100—and if you “like" their Facebook page you'll get on their mail list with access to clearance sales. My one beef with them is that the leather edges can be sharp, and my feet blister extremely easily.
You get only one pair of feet, and there are no reconstructions.
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Vionics are great! I've ditched all my cheap shoes (but that is because of a case of tendinitis, which happened last year; and which I can't blame on Als since I've been off them for 5 years now!). Definitely take good care of your feet. Ditch shoes that don't feel good, even if they look perfectly fine.
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I have used SAS for decades. They are made in the US and very comfortable, of course, depending on style.
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ahhhh...shoe lovers....and I don't mean of a certain variety that have outer red soles....i mean rabid lovers of COMFORTABLE shoes...shoes that make you forget that you are wearing them....shoes that make you smile when you take them off and thank for getting you through the day....shoes that you look at the construction and makes your heart skip a beat...as Sandy said...because you know once you slip your feet into them you know you will feel like you will be walking on marshmallows....
My closet is filled with...
Mephistos
wolkys
waldlaufers
Taryn Rose
Naot
Durea
Merrills
Zieras
Like Sandy....shoes and sneakers made by Wolky, Ziera and Waldlaufer that have rocker soles are my hands down favorite when doing serious walking on concrete.....
💕💕💕💕💕
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I guess this means no more Payless.
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I've been on femara for a little over a year and I have had little to no side effects. I already had severe osteoarthritis in my knees, psoriatic arthritis in my hands and feet, and 3 slipped discs, so I've had a good bit of pain and stiffness for a long time and that has not increased. The things that help me the most are a good long soak in the tub every morning and frequent massages. LOL, and Voltaren.
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