For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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I am sorry about your stomach pain and glad you found this forum as well as some relief with an antacid medication.
For what it is worth, outside the Medical Oncology (MO) Team I see few other medical professionals who know diddly-squat about what we take or go through trying to have quality of life and be cancer free. I have been very fortunate that my Plastic Surgeon and my Primary Care are married to BC survivors. When a lump appeared on my reconstructed breast, my PS had me in his office and scheduled for surgery immediately. He told me it was nothing but some fat but he also knew I was scared.
Not only do I take to every appointment a list of meds and surgeries, I have also started printing the drug and side effects sheets from http://chemocare.com/ and mailing them to the person I am seeing before my appointment giving them time to study. My Optometrist is dealing with my third lens prescription change since chemo. I shared the following with her from this study: https://www.aao.org/eyenet/article/watch-ocular-ef... (BTW, you have to well into the article to read about Arimidex.)
"A study by Dr. Eisner and colleagues suggests that anastrozole can cause small retinal hemorrhages in some patients.(4) He said that his research indicates that breast cancer patients who take anastrozole are more likely to have retinal hemorrhages than tamoxifen users. These hemorrhages may be the result of excessive traction on the retina, caused by estrogen depletion.(5) Related effects, such as posterior vitreous detachments, may occur during the natural menopausal transition, he said. Dr. Eisner noted that it's possible to assess the tractional effects of AIs through the use of OCT. Other possible effects of AIs include photopsia and increased incidence of floaters, as well as dry eye."
Now she knows what else to check. Her comment to me was something like do you have to take this drug. Only if I want to live cancer free, LOL.
It is the same with my dermatologist's staff. Once they read about what I either have taken or am taking, they can make more informed decisions with me.
I guess I am just to the point that I have lost patience with "nice young" (or older) people that are clueless to my health care. I have also lost patience with people who want to exam me (even if it is just listening to my heart over my clothes) and they don't wash their hands!
I hope what I am doing to inform the medical people I see outside the MO Team might be a technique you can use. I thought at first these people went to medical school and they should know. But they don't know ... they know their area of specialty and not how cancer drugs work.
Coach Vicky
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CoachVicky, very well said. Thank you for sharing. I will integrate these ideas into my own medical care.
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DodgersGirl… Thank you. I was afraid at the length and details my OCD was coming thru. LOL.
Coach Vicky
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Coach Vicky, you provide a wealth of information. I would not have known to educate my ophthalmologist about Anastrozole and the effects it could have on my vision and ocular health. I am having low grade headaches and it feels like it’s coming from my eyes. This maybe the Anastrozole and it may not. I am getting ready to see an ophthalmologist so this info is very helpful
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Thank you, Bella2013.
If not for the women in these forums, I would have been lost on this journey. I work to share what and how others have taught me.
As a side, at a dental cleaning during chemo, the hygienist asked if I "permission from my oncologist" to have the cleaning. I replied I am in charge on my body not him and I approved the cleaning. Didn't get ask that again! My dentist did an early cleaning before I started chemo. He didn't charge me anything and accepted whatever my insurance paid (i.e. insurance paid for the early cleaning but my dentist's service). He really stepped up to the plate as did his staff. I left the first time with samples and recommendations for dental care during treatment. I had no trouble with my teeth or gums. My dentist taught me more about Arimidex and the jaw than anyone else. I was really fortunate with his care.
Coach Vicky
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I'm always surprised when the medical assistants, but more so, the physucian assistants and nurse practitioners, who can't even pronounce Aromasin let alone exemestane, and have no clue what it's even prescribed for. I sometimes feel like I should charge them for the education and research I do prior to an appointment.
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Thank you for your reply to my post. I appreciate it. I’m still annoyed today that the doctor wasn’t planning on listening to me until I got pushy. No, it wasn’t something that I ate that caused those painful attacks. I hope the antacid med will work but I’m certainly still not feeling great by any means. I noticed that other people have posted that their oncologists have told them to take Vitamin D and calcium. Mine said nothing about that. I do take daily supplements but if more calcium will help with the pains, then I’d be happy to take it. I understood calcium citrate is the one that is helpful. Does everyone here take those?
I was diagnosed with stage 1 A breast cancer and my oncotype was low risk. My cancer was invasive but I was given clear margins and no metastasis. I had Savi radiation and now the Arimidex. The Arimidex is the worst part of treatment. I’m not thrilled that the treatment seems to be worse than the cancer I had. I hope I don’t upset anyone saying that, but it’s been rough with the stomach pain and the joint pain. Thank you again and I wish everyone well!
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Ha! No kidding! Nancy, this is for you. :-
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I am in the same board like you ladies
But since I start yoga and I start go the gym I feel much better
I found that the exercise is the key
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Three weeks on Arimidex today. I noticed a deep, dull pain in my left hip at the beginning of this week that lingered a few days. Exercises directed at stretching and strengthening that joint helped so much! Other than that nothing too noticeable. Fingers crossed I have minimal difficulty throughout the treatment. Hugs to all
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Free2be- I've taken Citracal +D3 (500IU of D per pill, I take 2 a day) for quite a few years, along with a with a multi vitamin that has 1,000 IU of D. My MO had me add 2,000 IU of D3.
Wishing you well!
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can you please give me your opinion in below case good morning ,i have question regarding patient who have breast cancer hormone receptor positive ,took tamoxifien 5 years then switched to anastrazole for 3 years ,hormone therapy stopped completely since 4 months ago ,does it good to continue anastrazole for more 2-3 years to decrease the cancer recurrence risk ,with balance to the joints and bones side effects
your answer will be appreciated ,thanks alot
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Free2B, I have a similar diagnosis, one unclear margin, and have finished radiation a week and a half ago. I am extremely upset about having to begin Arimidex, having read about all the bad SEs. I definitely consider that, among surgery and radiation, the long-term drug therapy to be the part I dread the most. My MO explained everything in detail and heard my fears sympathetically, but it seems the only alternative would be tamoxifen, which she said is less protective and has its own (very scary) SEs. I've been given a month's reprieve, to think and heal from radiation. I have already started doing yoga at the hospital, which could be of help going forward.
I am really wondering how risky it would be to decline the meds. I know of a number of women who have done so. No one wants to think they aren't doing everything they can to prevent recurrence, but this has really been a struggle to contemplate.
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FYI
My breast cancer surgeon, Dr. Kristi Funk (who is amazing) has written a book called BREASTS: THE OWNER'S MANUAL which is a guide to reducing cancer risk, making treatment choices and optimizing outcomes. There is nothing like it out there. I've read a pre-release copy and it's brilliant-- so straightforward and practical-- I wish I had read this years ago and maybe I wouldn't need to be on this board! :0
She offers a free download of one chapter on her website so you can see for yourself...I highly recommend for those of us going through this BC journey as well as cancer-free women to increase odds of staying that way. It's a great mom's day gift for women in your life.
More info and pre-order here https://pinklotus.com/elements/breasts-the-owners-...
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Hi All,
I had a lumpectomy on 6/30/17 followed by 22 radiation treatments with boosters finishing in 9/17. I started taking exemestane at the end of September but after four doses I started having miserable diarrhea so urgent that I couldn't leave the house. I was taking Advil for frozen shoulder and rotator cuff caused by surgery concurrent to taking the exemestane. Advil constipates me and I just thought my body was adjusting to this new drug until I stopped the Advil after 6 weeks and the diarrhea and awful gas pains returned. My oncologist sent me for tests for c.diff ( which came back negative) and she took me off the exemestane. She gave my body a two month break and prescribed anastrozole. I took one pill and the diarrhea was back. I toughed it out for two weeks until she took me off the anastrozole, too. I see her in May and I assume letrazole will be next. Has anybody else had this problematic SE from an AI? I had the bone pain and dark mood but this colonoscopy prep type urgent diarrhea is a deal breaker but I'm at a loss for what's next.
DX: DCIS, Stage 1, Grade 2, 0/2 Nodes, ER+ HER2-
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Thanks for the link, jpBCfree. Your doc looks pretty cool. I ordered the sample chapter and will probably look into getting the book.
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Started anastrozole last Jan. I'm 4 yrs out & was on Tamoxifen for 3. This winter my hands & feet are cracking something awful. Never in my life have had this before, thinking from the meds. Anyone else? Using my leftover Aquaphor from rads keeps it in check but still! I drink lots of water daily.
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For those of you who are struggling with Arimidex, I feel much better on Femora than I did with the Arimidex. Maybe that's an option. Have done each for 6 months now. Saw my orthopedist yesterday and my joint pain feels and looks on xray like it did 3 years ago when I had a carpel tunnel repair and thumb work. He gave me cortisone shots in each hand - first time the right has needed it although when I had the left repaired I thought I would be in within 2 years to have the right done.
My knees are much better now that I am walking more. My goal is to play nine holes of golf 2 times a week and go to stretch and flex twice. Fired up my fitbit again. Was inspired by a friend who started at 3000 steps a day and worked herself up to 10000. I started at 5 and met my goal every day last week and so far this week at 5500.
Spring is coming (summer here in Phoenix already) so hydrate everyone!
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sarahstrong:
I was started to be concerned that I’m the only one premenopausal taking this. I read online on cancer.com that it s not meant for premenopausal and I am getting a second opinion on Monday. I have been taking the pill since this past Sunday and I’ve been feeling “weird” - moody, insomnia, faint. But as a side note, I’ve been very symptomatic since chemo. I am supposed to be on it for 10 years. Well see how it goes
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zena: I am premenopausal and I'm taking Arimidex
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Zena32- you can be pre menopausal and take anastrozole only if you're getting shots for ovarian suppression or have your ovaries removed. Anastrozole does not protect you if you are pre menopausal and still getting your periods as it does not block estrogen from ovaries. I saw your other post where you said you are very young and still getting periods. Unless you have gotten Lupron or Zoladex shots to supress ovarian function the anastrozole will not work. Not sure why your doctor would put you on it when you had said you still get periods. Good idea for that second opinion.
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I have been on Arimidex since october 2016
I have been experiencing severe daily heartburn, back and joint pain and weakness and getting worse.
Anyone experiencing anything like this. I feel like I have no quality of life, I have constant joint pain including the bottom of my feet and difficulty opening jars or a simple bottle of water.
Now my iron levels are on the low side. I am also confused as to how long I should be on to??? One Oncologist told me 5, the other 10.
Anyone in the same situation and confused.........
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My integration Dr. recommended a book which I just started and I highly recommend it to everyone. So far it is very informative and encouraging.
Anti-Cancer, A New Way of Life by David Servan-Schreiber, MD, PhD
He had cancer and this is his research and journey "to be a part of the tail on the right side of the bell curve when it comes to statistics" (his words, but I'm taking them on as my mantra now.
).Happy Spring everyone, stay strong.
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Luttece - Talk to your MO. I did 6 months of arimidex and was switched to femora 6 months ago and am much happier. Some arthritic aches and pains but had them before. (I'm soon to be 72). I had terrible headaches on the arimidex. We all seem to react differently to these drugs and some do better on one rather than the other. Some on the AI thread also think even the manufacturer makes a difference. It also seems as if the SE don't always happen immediately. I took nexium all the time I was in chemo was able to stop after. Good luck. Those SE's sound awful.
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CoachVicky I love your idea to print info about your drugs and mail them to your doc before the appointment. I have an eye doc appointment in a couple of weeks. I need to tell hm about being BRCA2 which raises the risk of Melanoma of the eyes, and now I know I need to tell him about SEs of Arimidex.
Has anyone had breast swelling, lymphedema or capusular contracture (scar tissue build up around an implant that makes the breast hard) after starting Arimidex? I had a nipple sparing direct to implant bilateral mastectomy on October 11 because of the BRCA mutation. The cancer side was flatter and droopier all through chemo because they took more tissue around the nodes and tumor. I’ve been taking Arimidex for 2 months. In the last 3 weeks, I’mswelling in the breast and underarm area and the reconstructed breast feels hard.
My oncologist is sending me to lymphedema therapy next week, and I have an appointment with my PS next week. Other then this upsetting development, I’m not having side effects from Arimidex.
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Orangedaisy - I have noticed that since I started Arimidex, my mastectomy breast does somewhat uncomfortable - like it's stretched but I am not noticing swelling. My arm as well feels same. I have been on it since Jan. 1. I started working out with light weights in hopes "untighten" that feeling. It's very strange. I wonder if it is a side effect.
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Glad the print and mail works for you!
I was up in Nashville in late March and got fitted at Nordstrom for great support bras. I can really tell the difference in what I was wearing to what I am wearing now. I have less markings when I sleep in these bras at night.
Also, you might ask WhippetMom about your implants and sizing. She has a forum titled something like "Breast Implants 101".
I swell at night and take a diuretic in the morning. I don't know if it is Arimidex or not.
When I had my skin nipples constructed, my PS did remove some excess skin and tightened the new girls up a bit!
Best wishes,
Coach Vicky
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I am due to finish 5 years of Arimidex this May. At my last appointment my MO told me new research says to take it for 10 years, but she is leaving the decision up to me. I was SO looking forward to being off of it. This week, my aunt, who had the same BC I had a few years before me, found out she has Malignant Pleural Effusion, which mean her cancer has come back in her lungs. Not a good outlook. This has me really concerned - will those 5 extra years really make the difference in preventing spread? Any insight would be appreciated.
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For what it is worth ...
My original MO said 5 years maybe 10.
I went out of state for a second opinion of all my treatments. That MO said 5 years and to look at where I am after that. He said Arimidex was the best to take for post menopausal women and if I could not tolerate it, there were other choices.
Changed MOs where I live (North Alabama). I stayed within the same medical group but go to a different location and a different MO (who I REALLY like). He said 5 years and that the research for an additional 5 years was not definitive for having a benefit. He elaborated that the research is definitive that an additional 5 years of Tamoxifen is beneficial.
If someone could guarantee me 100% that an additional 5 years would mean no cancer ever, I would consider the extra years. Otherwise, I am off Arimidex 4 April 2022.
Coach Vicky
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Hi Ladies - I'm new to this particular thread. I found it because I was looking for info on blood clots due to anastrazole. I started taking it Jan, 2018 and the only real SE I have is hot flashes. I never had them during menopause (my Mom never did either) and now I get them ... bad too. Anyway, I've had this slight pain in the back of my knee for a few weeks now (inner side). It's not real painful, it's more like a knot. I never had a blood clot so don't know what one feels like. Doing some research it seems like it would be a serious pain that doesn't go away. Mine is a slight annoyance that comes and goes, but there most of the time. Just wondering if anyone here has had a blood clot from the meds. I'm not scheduled to see my MO until August. Thanks.
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