For Arimidex (Anastrozole) users, new, past, and ongoing
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Exemestane is generic Aromasin. Generic Arimidex is Anastrozole, which is what I am on, and which also has side effects like joint pain & stiffness. Sorry I cannot help with advice on Exemestane. Hope another BC sister can chime in here. Have you been on it for awhile & side effects worsening? Perhaps you can call the MO office for some advice on the side effects?
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So ... with Anastrozole being rather rough, despite it not being described as the worst Rx one might be prescribed, what's the news about the *next generation* of AI for BC? Is there any? If not, why not?
I start radiation on Tuesday after a lumpectomy (2 surgeries in October; long story as wires were moved) for HER2-, ER+/PR+, stage 1, oncotype 10.
From what I've read here and on other boards, the radiation will be a relative picnic compared to the 5 years of Rx after.
Or are there "not-so-bad" experiences and I'm missing them?
But back to news about next gen Rx. Anyone?
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MicheleH57 - Hello there. Healing thoughts to you as you continue your journey. You may wish to take a look at the topic "Doing Well on AIs" for some "not so bad" experiences. I would characterize my experience with Anastrozole as "not so bad". Please be advised that radiation treatment for some, would not necessarily be termed a "picnic". Hope your radiation oncologist has given you good advice on preventing skin damage, the importance of eating well (protein for healing), etc. My radiation was almost 4 yrs ago, so not sure what has changed on that front. I have very fair skin (natural redhead) and my skin held up extremely well - religiously used Miaderm cream.
Have not heard of anything new on the Rx horizon. Perhaps someone else will have some insight on this.
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Michele,
I have been on anastrozole since January. Doing fine. Drink a ton of water, exercise, eat well. Not that we can help ourselves, but try not to read yourself crazy. You don’t know until you know. If you trust your Dr., then follow what he/she says. If oneAI does not sit well, try another. Live your life
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Thank you for the referral to the other posting site here.
A HUGE help! Thanks again!
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MicheleH57 Radiation was manageable for me. But, not a 'picnic.' As the weeks progressed, I was ever more tired. Fatigue was my main challenge, and I just had to get a lot more sleep, and also take care of my skin, of course. I was guided to eat A LOT more protein than usual (70-100 g/day), and by surgeons and by radiation oncologist, for cell repair. Maybe 2-3 weeks after radiation ended, I started regaining energy, and a couple of months later, felt normal again. But, during radiation, I certainly was tired. Mine was 7 weeks, 5x/week.
EVERYONE seems to be different, in how we respond to all AI's, for sure, so I'll just share my own story, not presuming that anyone else is the same.
Being on an AI is not a horror show at all for me. I've accustomed myself to some annoyances, but nothing is ghastly or impossible, and every single 'side effect' receded and was more bothersome at first, and much easier or disappeared as time went on. After 2-3 months, every single annoyance was better, which is exactly what my MO predicted.
Anastrozole was my oncologist's choice to try first, because in his extensive practice, he'd seen people tolerate it a bit better than others. Lots of the 'side effects' of the AI meds are actually simply due to reducing the estrogen level. So, they're not blamable necessarily more on one brand than another, and the difference in which medication causes more annoyances sometimes is as simple as what fillers are used in the compounding, since the actual AI part of it will be pretty similar, as far as how your body behaves. According to how my oncologist has explained it, that is. I've become accustomed to a bit more stiffness and joint challenges, and daily exercise and drinking a lot of water have both been the solution to most challenges. I just feel generally a bit creakier than I used to. But, not HORRIBLY so, and if I keep exercising and moving and hydrating really well, I feel better.
Sending warm wishes to you!
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Hi Gussie,
I went off anastrozole in August because of the pain. I took a 6 week holiday and then started exemestane. I've been on that since October 12th and I'm now almost crippled by the pain in my legs and hands. I'll be contacting my oncologist soon and who knows what I'll do next. It's always a balance between quality of life and taking a med.
I've been - and have always been - active even with all the pain. I walk/run at least an hour/day and find it makes no difference at all to my pain level.
Good luck with your decision.
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Amy - did you feel better when on your six week drug holiday? I decided to go off two days ago and hoping to be able to get around better. Right now I feel like a feeble cripple.
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there any reasons that some docs give letrozole others Arimidex? Are both equally efficient? Why some take 5 years and for others is suggested 19 years?
I am on letrozole for a year with bone muscle pain but they get word when rainy. Those days the entire body and bones are aching. But as some of you said, cancer is worse so we must deal with it. Let’s hope it does not get worse
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AmyCinny, did you notice the change when you took 6 weeks off? I am considering a vacation also, getting worse every week, my doc doesn't want me to take a break.
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Brand name Arimidex seems to have less intense SE than generic anastrozole. At first almost none, but after a year my hands, especially left hand are stiffening, and one finger on left locks up, sometimes requiring the use of the other hand to unlock it. Turmeric seems to help. I take a supplement as well as adding to diet. I wish I had more confidence that it was doing some good.
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Hello there! Anybody has elevated blood calcium since taking Anastrozole? Six months ago my calcium is high (10,4) my doctor recommended to take only 1 Caltrate a day instead of two...a month later it went normal, but now it’s elevated again (10.4). Before Anastrozole and without taking Caltrate, my calcium was normal. If Caltrate is causing it, what altesupplement can I used to protect my bones?
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Anx789 - Calcium and how to keep bones healthy is a puzzle to me. AIs are documented for contributing to osteopena/osteoperosis, and it seems like another drug /bisphosphonates are the DR's answer. But it seems like those have their own problems. I've read that "too much" calcium can cause heart issues for women and that as we age, we really do not get that much from food or supplements. Weight bearing exercises are supposed to help. I take a plant based supplement, New Chapter bone health - mostly D, K, calcium, and a few other ingredients. Would animal based be better? I walk/hike regularly. With covid, I have not been going to the gym, and I miss the weight circuit and treadmills - made me work harder. I have not had a bone scan in about 2 years, probably time to see what AI and age have done. I do not know if the exercise and supplement will build bone, but hopefully will slow the loss down. Thinking about ankle weights and small arm weights to increase weight bearing on hikes/walks. I eat dairy - yogurt, cheese, milk,
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BlueGirlRedState- I haven't been in a gym in months. Last 5 years I went 3-5 times a week, heavy duty weight bearing exercises, but Dexa scan showed osteopenia in the hip neck. I took Fosamax generic 1x a week for over a year. Had dexa about a month ago, back to normal range. Thought about Reclast infusion, actually endocrinologist called yesterday to set it up. I told them I'm sticking with the weekly pill, it's working. Add in, I don't know if I'd get side effects from infusion. Bottom line is the Anastrozole definitely went after my bones.
3/1/2023 will be 5 years of Anestrozole for me. I'm hoping I get to stop it, as well as the Fosamax. Drugs to offset the SE of another drug. UGH.
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Anx78, yes, I had elevated blood calcium levels in May and I stopped calcium supplements. It went back to normal. I have stopped all supplements and will get back to vitamin D in couple months. I think I was taking to many supplements.
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Calcium started to get a little higher but also have hyperthyroid, so my endocrinologist had me cut back on dosage of calcium. Got dx with right beast ca and had mastectomy. Started Arimidex and calcium went up again. Bone scan before starting was good for my age..69 yrs old. Stopped all calcium supplements but still on vit D. Calcium levels back down. I make it a point to eat calcium enriched foods, and using goat milk. Have to wait until next Jan for bone scan. Walk daily and average 15,000 steps per day
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So do "high" levels of Calcium suggest that it is not being absorbed and possibly why there is bone loss?
My calcium levels have fluctated a little month to month but stay in the low-mid "normal" range of 8.3-10.8. Initially dropped (still normal) with Ibrance and Arimidex, then came back up a little. I take about 5000 IU D with K. The New Chapter Bone strength ( I take 1/3-1/2 suggested dose) has calcium as well as D/K, and a little Mg Strontium, Silica, and Vanadium also listed - maybe from the algae?
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My calcium levels have been high since about 2015. They are staying around 10.1. I do not take calcium supplements - they don't agree with me. I've been off anastrozole for over a year. Off Fosamax for that long too. My MO said that at high levels it can indicate a thyroid problem and for me to watch it. So I am. I take a total of 3000 IU of vit D3 daily. And folic acid. Hard to tell if there is a relationship between higher calcium levels and anastrozole. My osteopenia has been stable for about 6 years.
HUGS!
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Thank you for the responses, I got worried for a little bit. I also read that Anastrozole can cause high calcium plus this pandemic made me lazier.
I had dexa scan last January 2020 when I started Anastrozole, everything is normal at my age, 49. How often is the recommended dexa scan?
lgbery - I am hypothyroid but I’ve never seen a n Endrocrinologist, should I see one
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BlueGirlRedState - I have taken the New Chapter Bone Strength for many years now. At the time of my diagnosis, my Calcium was very high.
Will see how the bones are doing with upcoming dexascan on 12/21/20. I have been doing a lot of exercising since COVID, so will be interesting to see what effect that has had. At any rate, I will absolutely not go on another drug!
Anx789 - Most medical plans only cover a dexascan every 2 years. My last one was just prior to my diagnosis.
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Like Celia said ususlly insurance covers dexa every 2 years. I had one in May 2019, showed start of osteopenia, then in Sept/Oct I started Fosamax generic. All through an endocrinologist. I was able to get another dexa last month, because of the year on the drug, to see if it was working. It is.
Endocrinologist discovered thru a blood test that I carry an antibody that turns thyroid levels down, TSH goes up. My levels over a few years were low as a 2.07, high of 5.45. If your can get into an endocrinologist, and insurance covers it, I'd recommend seeing one. Best of luck.
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Hello, I have not been on this site for a while but thought I would chime in. Been on Anastrozole since April. I got joint pain in my left shoulder which is opposite to the right side BC. I was having trouble sleeping and my restless legs seemed to be aggravated as well. I read on here a suggestion to try acupuncture so I have been doing that and I sleep so much better. Helped with hot flashes too.
my calcium levels and cholesterol levels are up. But my MO and women’s health doc are not too concerned yet. I do go to the gym 5-6 days a week. It is tough to get up, but I have never regretted a workout.I really like reading all these comments. I cannot believe it will soon be a year that I ended chemo! My hair is so thick and curly where before was just straight.
Radiation started in January and the itchiness was the worst part for me.
I pray for all of us here that and lo the support!!!
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Anx789, I am the same age as you, also hypothyroid. I had a dexa scan before I started on anastrozole, and it showed I already had osteoporosis. My MO started me on Prolia shots and I just had another dexa scan about a year and a half later. My insurance covered it no problem, so I think it depends on your individual case. Unfortunately, despite the supplements and Prolia, I didn't have any improvement. At least it didn't get worse, so that's something. I would definitely recommend seeing an endocrinologist if possible. It is hard to get your thyroid dosage right and my primary doctor says that he's seen that going on an AI can really cause changes in your thyroid function. I was over-treated for a while years back, and I think that is what is largely responsible for my osteoporosis.
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I've been on arimidex for 2 years. I've had right hip pain for 2 years. My onc doesn't feel it is related. I've had bone scan, MRI, physical therapy, dry needling, chiropractor, massage, NSAIDs, steroids, stretching, yoga, the list goes on and on. Nothing helps. I even tried name brand and 2 different manufacturers of generic, I decided to stop it for 2 weeks....take my own drug holiday. Pain was gone in 3 days for the first time in 2 years! After a week I got scared that I was off and resumed it. Knock on wood no return of pain after a month. I'm puzzled as to how or why a weeks break could have such a dramatic effect. Any thoughts
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Natemax - that is increadible, the relief you got from just a 2 week "vacation" from Arimidex, and that it has not come back. Makes me very tempted to do the same to see if the hand stiffness and locking finger gets better. Today I had to ask the nurse to unlock my finger for me after I clenched a fist and pumped my arm for an IV. I would love also to know what the tumor is doing.
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whatjusthappened - I’ve been hypothyroid since my 20s, it’s been under control but recently my test results doesn’t make sense to my primary, so she told me to stop Biotin, and it’s normal now. I read Biotin affects thyroid test results but my primarythinks it also affects absorption so she told me to stop taking it. I have stopped calcium supplement too. Seems like I can not take any supplements...
Right now, the only supplement I take is Ocuvite, for my eyes. I recently found out I have cataract, maybe another gift from taking Anastrozole or a side effect of Taxotere. 🙁
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Natemax, while on Arimidex I had almost constant muscle pain in my thighs. Neither exercise nor medication helped and I was close to giving up AIs for good when my MO suggested taking a one-month vacation. Within days that pain and a few other troublesome SEs were totally gone! When the month ended, I switched to Exemestane and have found it to give me fewer SEs. I have no idea why one AI can be so much easier to take than another (maybe the fillers used?), but that certainly was my personal experience! If your pain returns, just know that there are alternatives that may be easier for you to take.
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I have been on Anastrozole for a couple of months. After reading about the side effects, I was really worried. I did have all the side effects at first, but all were mild, mostly headache, fatigue and slight nausea. For a couple of days, I had pretty bad joint pain. I started taking extra D3 (for a total of almost 500 lU) and the joint pain is gone. My oncologist did say that "mature" women seem to tolerate these pills much better (I'm 72). I just completed 18 days of radiation Monday so I'm not sure if the pills made me more tired because the radiation was having that effect. So, bottom line, for me I am very pleasantly surprised by how well I'm doing.
Good luck to you all!
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Anx789, I have heard that biotin can affect test results, but have never heard of it affecting absorption. I usually just stop taking it a few days before a lab draw. I also always take my thyroid medicine on an empty stomach, but I'm sure you know that. I have been on it since my twenties as well, and my dosage has gone up and down over the years. I think that the sudden menopause and having osteoporosis make it that much more difficult to get the dosage right. Does your primary think that the anastrozole has affected your results?
Natemax, that is incredible that you got such relief from going off the arimidex. I have tried several vacations hoping for a clear improvement, but the joint pains continue regardless, so I don't know if I can blame it entirely on the arimidex. I'm on another vacation right now (self-imposed) because I'm wondering how long I need to be off of it to make the pain go away. Sometimes I think that every joint in my body hurts.
Dreamhome, thanks for posting that you're doing well. It is always nice to hear positive stories. Radiation can definitely make you tired! It will most likely pass.
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whatjusthappened- On my thyroid test,T4 was normal but TSH was low, which she said doesn’t make sense. She thinks Biotin was affecting the test resnot Anastrozole. When I stopped Biotin, my test is normal again.
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