For Arimidex (Anastrozole) users, new, past, and ongoing
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Hi all, first time I have posted on this topic but have been following for a couple of months. I knew my OC would eventually add hormone therapy and yesterday he did. I am to start anastrozole and will tell you I’m very nervous about doing that. It seems like so many here are having issues with it. I am 62 years young but already have osteoporosis and osteoarthritis in knees, hips and spine. I take alendronate sodium for osteoporosis and can manage arthritis pain so far with over the counter medication. What I am most concerned about is having pain worse than I already have.
I was extremely nervous about taking alendronate sodium due to all the SE, I have been on it for 8 months and haven’t really seen anything, except for some acid reflux the day I take the med. I’m hoping for the same result once I start anastrozole. It does seem like I need to give it some time, possible 3 months, to sort out based on the most current discussion.
Thanks to all who post here, while some posts are scary, it helps to understand what you are facing and that everyone have different experiences on the meds.
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Hi MACTAZ! Your post sounded like me less than 2 months ago! The ladies here calmed me down lol. I'm on Anastrozole and feel like I'm doing ok on it. I had a deja scan right before I started and was surprised that I'm in the osteopenia stage. I thought for sure they'd just leave me on Tamoxifen, but nope! I'm trying to kick up my exercise and dairy and I take a calcium supplement. I had asked the nurse if I should do Claritin and she said I wouldn't need it, but about a week in I just did it. Why deal with potential pain when I can take a Claritin?!
I have hot flashes, but had them with Tamoxifen. With both, they're tolerable. Funny I read someone else's post about mood swings, insomnia....it's so hard to figure out what's age, a med, etc. I think I've had some mood swings- irritable, but maybe that's the teenager in the house???
Good luck and "try" not to analyze everything happening in your body....it's hard though!!
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RE: Arimidex, its side effects, and bone loss
I've been on it for 3+ months. Lots of my early bothersome side effects (hot flashes, sleepiness) have subsided. Now the main one that bothers me is numb fingers, as if my hands are asleep. I can shake them awake again, but it happens quite often. Not a deal breaker. For my diagnosis, I have a 50% reduction in recurrence rate of my cancer if I'm on an AI. I have an infusion of Zometa every 6 months to counteract bone loss.
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I've posted about this before but will add a few things here. I've been on Anastrozole for almost 2 years with very light side effects. My biggest issue is the Buddha belly and mood swings/depression. The other issues - joint aches and pains, insomnia (I now take Melatonin and that really has helped), and hot flashes are manageable. I can't take any of the biophosphonates because I've had small tumors (benign, thankfully) in my jaw so my MO doesn't want to take any chances of jawbone issues. My dexa scans have been good so for now, I don't take them. If my bones start deteriorating, I guess I will have to take something.
When do you all take Claritin? Morning or evening? I'm not sure when I should take it to get maximum benefit from it.
And do any of you get tired in the afternoon?
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MACTAZ--lots of us have eased into the AI either by taking half a pill/day or taking a full one every other day. I cleared this with my MO, but I don't think anyone has reported that their doctor had a problem with it and some don't even bother to ask. I started every other day 11/11 last year, and started daily 12/1. I do feel a little stiffer/creakier, did have some headaches early on, but I can't say I notice much in the way of SEs these days. I was most worried about it interfering with my sleep, but I haven't noticed that at all. FWIW, I take it with my lunch.
And Snickers I get tired most afternoons but I really doubt that has anything to do with the AI. ;-)
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Thanks all, I appreciate the feedback. I think I will try easing into it, I’m sure my OC would be fine with that. Also, I see many use Claritin, I take Zyrtec daily for my sinus headaches. When I was on chemo and getting Neulasta my OC said that Zyrtec would work just as well as Claritin. If I do have increased aches I might try switching to see if that helps. I know they have different acting agents.
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Hi everyone!! I've been on anastrozole for close to 8 months. My stiffness/joint pain did decrease in the 1st few weeks once my body adjust to this med. I don't do Claritin. I have found, KEEPING moving is key although I'm not getting up once per hour in the middle of the night LOL so mornings are a little hard. My arms/hands fall asleep at night, but I had this before BC. For awhile I was not getting any hot flashes or night sweats, but the last few days, look out! Breaking out in sweats so I wanted to pass along I think I found the trigger----Not eating well, or introducing another type food you're not used to eating. For me, I cut out red wine in the beginning, I only have white now just a few times per week. Last Sunday I had a glass of red, sweated all night even after drinking lots of water. Cheese definitely sends me into sweating fits---I still want to eat cheese as I need calcium and cannot take a supplement (it causes me headaches). I only ate 1/2 a grilled cheese sandwich w/tomatoe on a slice of oat nut bread for lunch today, and I am ready to just dive into a pool or something!
Somehow since my diagnosis I haven't eaten much cheese as my brain was equating it to estrogen and that is was bad. Anyway, I am now wondering if some of these SEs for some of us at least, could be better managed if we just try to pay better attention to what we are using to fuel our bodies? I also ate cottage cheese for breakfast on a few crackers. First time I've had cottage cheese in years!!! Today has been tough. I think I did it to myself though. I love cheese, but I think it's the devil if I overdo it, and in the last few days, I've definitely overdone it. Does this make any sense?
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Hi all. I'm new here. I have found great wisdom from your posts. I have been on Anastrozole for 6 months. I have had mild hot flashes since starting anastrozole, not a big deal. The last 3 months, I have had achy shoulder, arm and back muscles, increased joint pain in my fingers, and depression. I have arthritis in my hands and back, so this is just an increase in symptoms. I see my MO on Thursday, so will talk about all of this. I am 100% ER, PR positive, so I will not stop anastrozole, but am hopeful she can help. This is all worth it (so far) if it prevents a recurrence! Good luck to all of us!
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Hi there. I just got home from Getting my 1st prescription for Arimidex. Praying for mild side effects. When is the best time to take? Before bed? I am praying I do just fine in this. Thanks
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Welcome, psugirl! We're so glad you've joined our community, and hope you find this to be a source of support as you continue with your treatment!
The Mods
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Suzyshaklechick- welcome to the group. You should pick a time that's easiest for you to take every day at about the same time. I picked 12:30 AM, I'm a night owl, so its just easier for me. I've set the alarm on my cell to go off every day at 12:30 AM - so I can't forget. I'm retired so I sleep in, my wake up time is all over the place. But others take it with breakfast, I've even read here some take it at lunch daily, or at dinner.
If you pick a time and its not working for you, then just change it up. It's something none of us want to take, but we do get through it. Best of luck to you!
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Are there any other people who have had surgery and small tumor (7mm) that havejust taken an AI and no radiation? That is my Dr's plan for me. Said I didn't really need radiation. Just Arimidex
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Suzy--some people have had tummy problems when taking an AI on an empty stomach so I think just plan to take it with a meal. I take mine with lunch since I don't eat breakfast. If I did I'd probably take it then, just to get it out of the way. I've never heard of anyone not getting rads after a lumpectomy--have you met with a radiation oncologist just to hear the numbers? (How much radiation would reduce your risk of recurrence. Maybe in your case there isn't much impact?)
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Suzy, I agree with Ingerp. Unless you have extenuating circumstances, I believe standard of care is radiation with a lumpectomy. I would seek a second opinion.0
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Suzy, I’m in line with peregrinelady and Ingerp, I haven’t heard of not getting rads. Consider getting a second opinion or talk with an RO.
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Suzy, My tumor was small, low grade, very low oncotype (4) slow growing and was told I needed rads plus AI. Ditto on the second opinion
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Hi Suzy- Just wanted to let you know I take mine in the morning. A lot of times on an empty stomach (well except for coffee!). I haven't had any issues that I've noticed! Good Luck.
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Suzy, my tumor was 7mm too and was stage IA grade 3. I had a single dose of IORT during my lumpectomy & reconstruction surgeries all in 5 hrs. I'm part of a study my cancer center is doing for those who are diagnosed with early stage BC and 60+ yrs. I have heard of not having radiation for women in a group 70's. I encourage you as the others have, get a second opinion.
I've been taking my anastrozole for 4 months first thing in the am. and have experienced minor SE. I also have osteoarthritis in my knees, back & shoulder with trigger finger in my left thumb. I have added CoQu10 to help reduce leg cramps, but also think it helps with joint pain. I also take 2-1000 mg of vitamin D and 1-1000 mg of calcium. I started riding my aerodyn bike as walking is too much of an impact for my knees & feel this has helped too. My worst SE are the mood swings I become someone I've never been!😳 the hardest part is my hubby ends up hearing or getting the brunt end of things. Thank goodness he's so patient! If these SE are the worst I'm in for the long haul.
DX 8/14/18 IDC left<1 cm stage IA, grade 3 ER+ PR+ Her2- 0/2 sentinel nodes. Surgery 10/3/18- lumpectomy left with reconstruction & right reduction for symmetry, Radiation- IORT, hormone- anastrozole
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I never thought I would give up on the AIs. I thought, who would ever risk a recurrence of breast cancer? ....well you live and learn. I had a small 8 mm stage 1 node negative IDC, oncotype 9. I had a lumpectomy in June 2016 followed by radiation. Well thirty months of hormone therapy has been hell. First I tried Femara which caused my hands to cramp into claws, terrible hot flashes and muscle cramping. After 9 months I was switched to Arimidex. The hot flashes and cramping were bad but bearable, but the muscle and joint pain, especially in my left shoulder, have been horrible. I thought I would try to soldier through, which was a mistake. After months of increasing pain I finally I insisted on an MRI , it showed that four tendons in my shoulder were completely shredded. A little research revealed that tendinitis and tendinosis and tendon ruptures have been reported as rare, serious side affects of Aromatase Inhibitors. I am learning that my painful wrists (bilateral carpal tunnel)and sharply declining bone density, were all caused by these drugs. I have now had rotator cuff surgery including a tenotomy of my biceps tendon(irreparable and was simply disconnected) I have been off the AIs for two months while I do PT on my shoulder. Unfortunately my oncologist wants me back on the drugs and wasquite threatening about my discontinuing the AIs. I need to make some hard decisions about wheretogo from here. I now know why someone would give up on hormone therapy.
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EmilyS- none of us here can throw shade at someone making a decision to go off the AI. We all walk the path, what would I do if my QOL caused such physical pain, required surgeries, etc. You have to do what's best for you. And it's a hard decision no matter how you look at it. Wishing you the best.
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Emily, so sorry you are having such serious side effects. I hope you can recover from this quickly. I would encourage you to ask for your personal numbers of recurrence reduction, so you can make an informed choice
I really wish they would do a risk benefit for each of us as each situation is so different. That would help us plan the best decision regarding our treatment.
I really felt That my BS laid out the options and the pros and cons. Right now I too am not so sure the treatment benefits outweigh the risks. In my case the AI only gives me a 2% less chance of recurrence. Not sure that warrants the risks to my bones, heart, eyes and joints. Not to mention the hair loss. I will be having a serious discussion with my MO later this week.
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thank you for all your comments. Is there serious hairllosswith Arimidex? This just keeps getting better😳
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Hi Emily. Sorry to hear of your troubles with AI. I wanted to respond as my BC diagnosis was similar to yours and I almost went down the AI path per my Oncologist strong suggestion but did a ton of my own research (and hours on this board looking at AI and Tamoxifen postings) and decided that for the few percentage points lower recurrence that AI gave me over Tamoxifen, it wasn't worth it because the side effects overall on AI's are much more prevalent and serious. My non-medical understanding is that AI stops all estrogen whereas Tamoxifen simply blocks estrogen to breast cells but still allows estrogen to still support bones and the brain. IMO bone density and brain health are really important-- I'm in my early 50s and need my bones and brain to stay strong for many more years!
So, for 2.5 years I've been taking 20mg of Tamoxifen nightly and have tolerated it quite well. Some days (especially if I don't exercise) I have hot flashes but not too severe. Overall, I feel better than ever in spite of the Tamoxifen! But then again I made lot of positive lifestyle changes— vegan diet (less body fat), no more wine/alcohol, very little sugar and processed foods, exercise almost daily and ample sleep and relaxation. I highly recommend the recent Breast Manual book written by my breast cancer surgeon Dr. Kristi Funk— she's brilliant and knows her stuff and has really helped me understand that my lifestyle choices are just as (and maybe even more) important to cancer recurrence than which drug you take (or even if you take any). I know that I've reduced my circulating estrogen by making these lifestyle choices so when I stop taking the Tamoxifen after 5 years I'll still be fine. Good luck to you and everyone reading this.
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I have just started taking Arimidex and am now thinking about not taking it. I have Hashimotos Thyroditis and no one seems to be able to tell me if the estrogen blocker will react with my thyroxine, a hormone medication I take for the thyroditis. Does anyne else have this problem?
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Hi there. Ive said many times on tis forum that MOs actually know very little about female hormones. I find this very contradictory since they are the ones prescribing anti hormone therapy. Have you asked your endocrinologist? They should be much better informed on that subject. Good luck and keep us posted.
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Suzy--I have not experienced hair loss on anastrozole (although I'm less than three months in--keeping my fingers crossed!), and agree with several other posters that I seem to read it more about letrozole. I've also been taking Biotin since before my dx--not sure if that's helped--I started it more for nail growth. I've always had fairly thick hair. Seems like a lot of women who are losing hair had thin hair already?
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Hi, jp. My new oncologist is looking at Tamoxifen for me. I need to have a pelvic ultrasound as I am post menopausal, I also already have a thickened uterine lining. So Much Fun! She has also ordered a prosigna assay, which is usually used after 60 months of AI treatment to determine if another 5 years (god forbid) would be beneficial. I now call Anastrazole Nastyzole. Thanks for all your help.
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Suzy, I have always had tons of hair but my hair started thinning on Anastrozole. I was taken off it for that and joint issues and put on Exemestane. I too have started taking Biotin and my hair seems better.
Love the nastyzole nick name! Argh!
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RakcJT, I had my thyroid removed 6 years ago because of thyroid cancer. After stabilizing my levothyroxine in the beginning, my T4 and tsh have been good. I started Anastrozole Aug. 28, and my tsh levels in November were off the charts. I therefore had to have a neck CT scan in December to rule out cancer recurrence. Thankfully none was found, but I am now back to seeing my endocrinologist every 3 months to get my tsh levels back in range. My endocrinologist, who I really like, insists there is no relationship between Anastrozole and thyroid levels. I disagree. I see her next week and will discuss this further. That being said, I will continue with Anastrozole because at this point, it beats a recurrence. Good luck in your journey!
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We all have to make choices about our treatments, including when to stop them. I too always woke up with a headache on arimidex and eventually they lasted all day. Switched to letrozole and for me it's a better choice. Mood swings are much better and MO gave me venlafaxine (first 37.5 mg and now 75) and hot flashes are definitely better. Yes, my hair is definitely thinning and the texture is funny - it grew out well after taxol. My plan is just to be known as "the lady in the hat." Now that the hot flashes are under control, I wear a wig on occasion but love the hat collection I am growing. My stylist also points out that my mother was very bald when she died so maybe I shouldn't just blame the AI's.
For a variety of reasons, I wasn't willing to make major dietary changes although I know many feel that has been a good decision for them. I have been able to maintain my weight - MO told me she would be looking for either major gains or losses - so I am happy about that. I am a recovering alcoholic and haven't had a drink for over 35 years so that wasn't an issue for me. I have upped my exercising. My dog counts on me and I play golf with a wonderful group of ladies who are a great incentive to get out.
I take my letrozole in the first thing in the morning and have no nausea because it fit into my schedule and other medications I take. One just has to experiment with it. We are supposed to take it at the same time every day though. I seem to be sleeping more lately but I think it's the weather and the darkness rather than the medication. I am also two years older than when I started this journey. While I am about to get a second cortisone shot in my knee, many of my friends are having shoulder, hip and knee replacements - we are of that age. Although my dex scan was good, I had arthritis in assorted places pre-BC. I have continued the glucosime/chrondrotin and Calcium with Vitamin D from pre-BC times.
Whatever your choice about treatment, it is yours. Don't be bullied into something that isn't right for you. And don't look back. This is not ground hog day.
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