For Arimidex (Anastrozole) users, new, past, and ongoing
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Quick answer is Arimidex can cause bone loss, tamoxifen can actually build bone but each has their pros and cons. Arimidex is usually prescribed for post menopausal women. But there are lots of other considerations for these meds
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First I apologize for the very long post.
Had a really good conversation with my Onc, we went through all the SE and discussed which ones are manageable and which ones I don't think I can live with. I've decided I can probably manage the joint pain since it would appear it is arthritis related with some added “benefit" from AI but my biggest concerns are being sad and depressed. Dr. G agreed that feeling depressed and sad are not a SE he would want anyone to have to manage but said there are other paths we can take. He mentioned anti-depressants or try the other AI (Aromasin or Femara). I told him I tried antidepressants a long time ago and I didn't like how they made me feel. We discussed trying anastrozole again to see if the reset period would work reducing the SE. He said he was fine with that but wanted to make sure that if I started having mood changes I contact him immediately. My DH was there and we discussed, of course, he will be the first to notice and needs to speak up, even if it is just to say “call Gococo", (he is my doc), so DH doesn't get his head bit off.
He said do not completely discount antidepressants if the reset period doesn't work. He said things have changed over the year and there are different meds. He also said he can set me up with a phycologist, he thought my approach to life appears to be more mind based versus meds and said perhaps that might help. I'm definitely open to this and told him if I started to feel down maybe we try that first. If that doesn't work I guess I would go down the path of trying other meds or maybe even an anti-depressant.
We talked about my bone density, he said there is a concern especially since I have had a big change in me spine. I was diagnosed with osteopenia in 2014 and full blown osteoporosis in 2018. I started taking Fosomax 1 month before my BC diagnosis. My bone density scan this year showed I did build bone in my left hip, slight decrease in right but continued decline in spine. (I've gone from -.7 in 2014 to -2.7 in 2019). He said tamoxifen builds bone but of course has different side effects. He told me that while 5 years of tamoxifen results are less effective, 10 years provide the same as 5 years of AI. We tabled that for later discussions once we see what happens.
I'm also going to see my chiropractor, he is more of a holistic care provider. In fact he does very little spinal manipulation on me due to my osteoporosis and focused in on exercises, active muscle release and other therapies including exercises. I had been going to physical therapy but found that I got better result from him so I'm going back. I had discontinued going due to my chemo and surgeries over the past year.
So I guess I have my go forward plan and I'm comfortable with the direction. Started Anastrozole againtoday so we will see. Thanks again to all for being here with me through this, and sorry again for the long post. All take care.
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Mactaz, good girl in reaching out to your doctor. He sounds like a good doctor too, which is such a blessing to have! Sending you good thoughts that things will go better for you. I've been reading on here and also wanted to share some suggestions that are worth thinking about. There are different opinions on everything, seems like, so this is just some thoughts.
Someone recommended I try this for muscle pain: https://www.amazon.com/gp/product/B003A5U4XA/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1 I ordered it, always worth a try to me. Who'd of ever thought?
I read this post a couple of weeks ago:
"For those experiencing side effects on assorted aromatase inhibitor drugs, you might find that switching manufacturers of the same generic, switching to the name brand, or switching to a different drug can alleviate some side effects. Generally, finding the fewest additives and fillers works the best, but that is not universal. Here is a tool, previously posted by coachvicky, for determining which manufacturer add what, and also a link for the name brand Arimidex, not paid for through insurance, but rather supplied directly, for $30 per month" - they have now raised the price to $60 a month.
https://dailymed.nlm.nih.gov/dailymed/index.cfmhttps://www.eaglepharmacy.com/drug/arimidex
I had an echo done yesterday, and I asked the nurse if she thought there was a difference in generic versus brand name. If you search around on these boards, they talk about TEVA being a good brand name. She told me she knew there was a difference in Coumadin patients, they had different protimes depending on whether they used generic or brand name Coumadin. I then called my pharmacist friend and asked him the same question, he told me there is no difference in manufacturers. So, we have two opinions. I called TEVA and asked if they made anastrazole, they do and said they use the wholesaler AmeriSource Bergen. They told me to ask my pharmacy if they use this wholesaler and to order the TEVA anastrazole. I went to my Walmart and they do not use this wholesaler, but recommended I check with Walgreens. I talked to Walgreens, and they do get the TEVA anastrazole, I had to give them my insurance card and have my doctor send the script there for the next time I fill it, and she asked me to call them 3-4 days ahead and remind them I want the TEVA drug. To me, it is worth trying, but I know everyone is different, and you have to do what you have to do.
Could anyone explain to me why our dang insurance does not pay for Arimidex brand name? And why you can buy it for $60 a month, our country needs to be better than that. Sorry, I just get so irritated about that, and my $3900 yearly out of pocket. I was diagnosed in October. I owe my hospital over $8000 now, I'll be paying them $60 a month for a long time. Anyway...
I have also started a weight loss plan (I'm overweight), and my husband and I are walking every night. I think back to the days of having a beer, eating french fries, and how my life has changed. I enjoyed living and now have to fix a few of the things I took for granted.
Also, I read, on this board, to try MSM for joint pain. I bought the powder and drank a glass of it Wednesday, and my joint pain is much better today. It's not the tastiest thing, but it's better than tonic water! My MO recommended tonic water for joint pain because it has quinine in it, something else to try, just try not to put the gin in it! I've been reading more today and have read about ubiquinol and also acetyl L-carnitine (on the anastrazole Drug.com reviews) as being helpful. Has anyone tried those? Someone told me to try one thing at a time, so I've started making a list of things to try to see if they help. Hoping this will help someone too. Take care ladies, hugs, Lisa
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and, from SpecialK on the triple positive board (God bless her and that board):
It has been documented now that extended Tamoxifen therapy for ER+ pre-menopausal women is beneficial. Once that had been looked at it prompted a look at extended aromatase inhibitor therapy for post-menopausal patients, based on the premise that AI therapy is statistically more effective than Tamoxifen. The benefit of extended AI therapy seems to be limited to local recurrence, but not distant based on study results - here is some linked info. One genomic test that may help with the decision to extend AI therapy is the Breast Cancer Index test - typically done after five years of anti-hormonals -which had a dual result - your risk of recurrence going forward at the time of the test, and the likelihood of benefit.
https://www.breastcancer.org/research-news/asco-recommends-extended-hormonal-tx-for-some
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5937869/0 -
RE: AI brands
I'm on Anastrozole, manufactured by Accord. My SE's all seem to be related to lower estrogen, which would be the same no matter which brand, since that's the whole point of this med. Sigh. I would say that I am doing fine on this brand.
- I have to watch what I eat, and I am dropping some extra weight by adding protein and limiting carbs, plus portion control and trying to eat within an 11-hr window each day + eating small protein + complex carb snacks mid morning and mid afternoon. Have lost 9 pounds so far in 3 months. Slowly, but steadily, I think I'm succeeding.
- I do have some joints that complain. This is solved pretty well by building muscle and being more fit, because of 1 hour daily exercise + occasional NSAID. Exercise is usually deep-water exercise with resistance cuffs+foam barbells, some biking, and some hiking as rebuilt foot allows.
- my hair has thinned very slightly and Oh Well
- my Warm Flushes are not as bad as when I was on Tamoxifen when I was 45, nor as bad as actual menopause was for me--they're brief
- My sleep has been wakeful all night for 15 years, so awakening because of warm flushes sometimes is not something I can blame on this med, since I already was waking up to pee and toss and turn a couple of times anyway every night
- vaginal dryness sort-of-solved by Estradiol cream as prescribed + coconut oil to lubricate
- my brain runs at a slightly slower speed but not hugely so. I probably shouldn't be put in charge of quick-reaction and fast-thinking, like air traffic control, etc
- I feel a little tired every afternoon but maybe that's also from being 62 years old.... who knows.
- I feel better when I drink a lot of water every day
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Thank you Hiking Lady. I think of you often, our son lives in Portland, 2000 miles from Missouri. I've been there once, it is a beautiful place. I'm glad you are doing well, and appreciate your advice very much. I'm going to fill my water cup up, thank you. I try! Wish I had time for the deep-water exercise. You are very encouraging, thank you!
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If one AI isn't working for you because of SE's, I encourage talking to MO about a different AI. They do seem to have different SE's for each of us. Although my hair is definitely thinner since switching from arimidex to femora, my mood swings are definitely less wild. I have taken a mild anti-depressant for years. MO switched it and my hot flashes are definitely better.
Had a knee replacement 3 weeks ago but DEX scan is good and I had orthopedic procedures prior to BC so I'm definitely not blaming the AI's.
Water, water, and more water! Happy weekend.
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I fought like crazy to stay on TEVA brand Anastrozole. To be blunt, I was like a woman possessed. Ended up with Accord brand, few differences that I was probably over sensitive waiting for SE.
Right now TEVA or Accord, I too think a lot of my issues are from the missing estrogen in my body. My normal menopause was minimal, this has slammed me. Doable, and I will get through it. That being said, I can't wait to be off of this and to feel my "normal" again. Three and a half years and counting.
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I had been on Anastrozole Teva brand until about 8 months ago and did fairly well. I have preexisting joint issues. After I could not seem to get Teva I tried Accord. (Like a women possessed is an apt descriptor as I tried to get Teva). Anyway after time spent on Accord I progressively noticed quite a bit more foot and hand pain. Noticeable, and hand weakness.
Last month I got Teva unexpectedly. Hoorah! Well, I've had more fatigue and mild headaches on Teva (which I guess I ignored before) Argh.
Oddly they could only get 1 months worth so unless I'm surprised I'll be back to Accord soon. I still prefer/cope with Teva better.
Stay tuned! 🙏😉 If my diagnostic mammogram is normal in October my Oncologist says I am on the 5 year plan and will go off them March 1, 2020. But this has been an interesting generics test-case situation for me. I consider myself to be one who normally doesn't tend to get side effects or problems with medicine.
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Saw my radiation oncologist on Monday and when I told her I was struggling with walking up and down stairs due to knee pain, she has taken me off the Anastrazole, swapping me to Tamoxifen, with a month off taking anything first...yay a drug holiday!
I was excited to stop the pills, but me being me, a worrier that is, I start fretting about whether Tamoxifen will be worse, or not work, or something. Anyway what will be will be. This is the second day with no pills and I have a headache, wondering if it's withdrawal from the pills.0 -
WorryThePooh, I went off anastrozole for 3 weeks to see if my body would reset and joint pain and blue moods improve. Now that you mention it I did have some headaches during that time. But I will say my blue moods and depression improved from daily to a couple days in the 3 week period. I’m back on anastrozole to see if things improve but if not my doc also mentioned tamoxifen. I’ve been back on anastrozole for less than a week, first couple of days were tough (significant joint pain and sadness, but could also been due to last H&P infusion) but feeling good the last couple of days.
If you start taking tamoxifen let us know how you do on it. Take care and enjoy your restart period, I certainly did. Hugs.0 -
Good morning.
Has anyone had issues with headaches on anastrozole? The headaches I get come on while sleeping and will not go away, regardless of what I take, until late morning.
I see my MO on Friday and plan to discuss, but thought I would reach out.
Have a blessed day!
Catherine
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ARGH! I just got results of my DEXA scan, done in preparation for starting Arimidex in a few weeks. Lumbar spine indicated osteoporosis. Femoral neck, total hip, and forearm did not. I have NO reason to suspect bone mets, but I am concerned nonetheless. I'm only 57. How on earth can I have osteo? Anybody else experience anything like this? Thanks in advance for any words of wisdom.
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SJWhitten:Osteoporosis is in my family, and close female relatives have had it diagnosed in their mid-fifties. These are, in all cases, women who did have a lifetime habit of regular, weight-bearing exercise and took their calcium, so this is just genetics. Alas. I had osteopenia diagnosed before starting my AI, which is why I get Zometa infusions every 6 months now, and I'll have regular (annual or maybe every 2 years, I'm not sure...) DEXAScans to check how bone density is doing while I'm on my AI.
Arrgh, indeed!!!
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Hiking Lady,
Thanks for your reply. Both of my parents have osteoporosis. The doc told my Dad that Dad's is the worst case doc has ever seen. But dad is missing half his stomach (ulcer surgery decades ago), so I always chalked his up to that - unable to properly absorb nutrients.
But maybe this is just genetics. I just feel like this is one more thing piled on top of all the rest of this totally sucky cancer stuff. I've learned NOT to say "I can't take one more thing......" Cause when I say that, it hits
And I didn't even say it this time! And gosh you're on your second round I guess I will always wonder, at least in the back of mind - is this mets?. So that's my message to self to live every day to the fullest!
Thanks again.
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SJWhitten Yes, I've had two breast cancers. #1 in 2003 was completely cured by my treatment. #2, 15 years later, was a completely new one. This is just my bad luck. My oncologist said, with a warm and encouraging tone of voice, "Well, we'll cure this second one, too!"
You might consider putting your DX and TX information in your Profile, and set them to Public in Settings. Sometimes we can support each other especially well when we see what another person is dealing with overall, and where she is in treatment, etc. As you kindly did with me, noticing my two DX in my history.
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MACTAZ glad to hear you are feeling a bit better, and that your bad dream didn't come true, you made it to have the infusion! Thanks I will keep posting here and let you know how I go once I start on the Tamoxifen in September.
Catob1969 I did get a lot of headaches when I first started on Anastrazole but it settled after a few weeks from memory.0 -
HikingLady,
the only settings I see for the information on diagnosis and treatment are Private or Public. I don't see a way to set it for Members Only? am I missing something? Thanks.
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As I understand this site, no posting is visible to the general public. Public in this case means each other, other breast cancer patients who are sharing and supporting each other. We each have to log in, and the general public cannot read our posts. When we set our TX and DX information to Public, that means that we're sharing with each other on this site, not with the general public.
Personally, I feel comfortable with this level of sharing of my information. It's visible to members, and my privacy is protected because of my HikingLady moniker.
Maybe others can chime in and confirm that I'm understanding this correctly?
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Yes--"private" means nobody can see the information; "public" means that other BCO members can.
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Our posts to the forums are public posts and can be viewed by anyone. And that would include your Diagnosis info when “Public “ setting is used.
You can even find these posts by Googling keywords.
To test this, I used a laptop that I had never used to access BCO and did not log in. I clicked on Join Our Community and clicked on Active Topics. I could read any topic I wanted and I saw the footer info fir those who made their info Public
I believe that is one reason mods will tell you not to post phone numbers and why it’s a good idea not to use your real name s your user name.
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DodgersGirl Thanks for clarifying. I've tried this same test, but didn't get a ton of 'hits' on search engines to our posts on this site, since our conversations are so specific. I feel comfortable with this level of privacy, since our real names and contact information are protected.
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HikingLady- as do I
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Thanks for the info all!
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Hi ladies. I’ve been on Anastrozole for 17 months and have issues with vaginal/vulva tissue atrophy. Some days I am extremely uncomfortable. My Onc suggested Reveree (now called Bonafide) vaginal inserts, but I they make me even more uncomfortable. My Urologist suggested coconut oil since I can’t use an estrogen cream. It helps some, but I’m looking for other suggestions that can help
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There is a thread called I Want My Mojo Back. The ladies there may be able to help. Sorry I can’t do a link, use the search function.
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10 hours ago Orangedaisy wrote:
Hi ladies. I've been on Anastrozole for 17 months and have issues with vaginal/vulva tissue atrophy. Some days I am extremely uncomfortable. My Onc suggested Reveree (now called Bonafide) vaginal inserts, but I they make me even more uncomfortable. My Urologist suggested coconut oil since I can't use an estrogen cream. It helps some, but I'm looking for other suggestions that can help
Replying to Orangedaisy:
FWIW, I've bought these Vitamin E suppositories from amazon
Carlson - Key-E Suppositories, Vitamin E, Lubricates Dry Areas, Vaginal & Rectal, 24 Count
There are lots of questions/answers and over 1,200 reviews at the link. That should help you decide if these might work for you.
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Have been on arimidex for 18 months. Have insomnia since the 2nd month of starting it. In the 16th month hair started falling out,have decreased stamina and weight loss
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Catob, re: headaches on anastrozole. I’ve been on it 2 months, get headaches when I cough or sneeze, but never lying down. How weird is that? My MO had me stop for a week, they went away. So now I’m hoping that my head just gets used to the anastrozole eventually
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*As of this month (August), I've re-started anastrozole.
Summer heat waves threw me off course...
Started anastrozole May 1st & was consistent for a month or so... However, in June/July only managed a total of 10 pills, along w/ Multi-Vit 3x/ week. Citracal (calcium +Vit D) is still difficult to digest... taking 1/2 tab when I can manage it.
Nutrition advice from BCO sisters has been very helpful: I'm adding yogurt, a little nut butter & nut milks when I can find them... Fish oil tabs seem to help w/ breathing & dry cough. Also, trying to drink more water!
Thanks All !!! Enjoy the remainder of Summer,
Roseanne7
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