Concerned about the side effects of anastrozole

I started this drug only in November 2018. So far I have the dry eyes, but am wondering how I can tell the difference in knee pain from arthritis vs. the side effects of anastrozole. Also feeling tired all the time. Does anyone have any suggestions to the tiredness? I'm 63, Stage 1, HR+, ER+, HER-. I only needed radiation. Also hot flashes have increased. 🙁 Several people mentioned most women stop taking it from the side effects - what is the percentage of these people? I was told 5 to 10 yrs on this. I hope in 5 years they will have more info on whether another 5 years helps or not.

I have almost finished two years of Anastrozole. I can't say that I have noticed significant hair loss, but man oh man do I experience bone & joint pain. It is becoming difficult to get up out of a chair and I walk like an old lady. Am seriously thinking of stopping the drug.

Hi Celia,
That must be so confusing to get different opinions from different specialists. Perhaps I can clarify at least one apparent misunderstanding. Aromatase inhibitors (AIs) are a class of drugs that stop the production of estrogen in postmenopausal women. There are several kinds, for example:
Anastrozole (Arimidex)
Letrozole (Femara)
Exemestane (Aromasin)

It sounds like the first oncologist suggests anastrozole (brand name Arimidex) and the second prescribed exemestane (brand name Aromasin). Studies have found that they are equally effective, but they have different side effects. Every person reacts differently, so the choice is usually made according to which side effects you experience and which you can tolerate.

Tamoxifen is the oldest and most-prescribed selective estrogen receptor modulator (SERM). While an aromatase inhibitor is the first hormonal therapy medicine choice for postmenopausal women, tamoxifen is the first choice for premenopausal women and is still a good choice for postmenopausal women who can't take an aromatase inhibitor.

A number of studies have compared aromatase inhibitors with tamoxifen to see which type of medicine was more effective in treating early-stage, hormone-receptor-positive breast cancer in postmenopausal women.

I copied selected information above from the website BreastCancer.org from these 2 articles:
- https://www.breastcancer.org/treatment/hormonal/aromatase_inhibitors
- https://www.breastcancer.org/treatment/hormonal/serms/tamoxifen

I hope this helps to give you more information to discuss with your oncologist. I also look forward to hearing the experiences of others who may have had to choose between an AI and Tamoxifen.

My name is Celia, I live in Switzerland and had a cancer removed from one breast last year. my first oncologist prescribed Anastrazole, the second oncologist prescribed Aroma tase and this third Professor Oncologist said that I should quit all these terrible new medecins and take 20mg of Tamoxifen a day for 5 years - a drug of more than 20 years on the market and is the best and least harmful. I have been taking this drug now for a year and feel tired and this worries me because I felt quite vigorous before taking this drug which deprives me of my Estrogen - a very peculiar way to keep cancer at bay! Is there a better solution?
Thanks in advance for your replies and a very Happy New Year to you all.
Celia

Welcome @maryaronoff. You certainly have a unique set of considerations when deciding to take anastrozole or not. Your concerns and questions about combined side effects due to medications for breast cancer and multiple myeloma are good ones to ask your oncologist. I'll be interested in your decision after you weigh the pros and cons with your team. There are others here who, for their circumstances, chose not to take an AI, like @cindylb.

Mary, you may also interested in the discussions about multipe myeloma in the Blood Cancers group (https://connect.mayoclinic.org/group/blood-cancers-disorders/)
– Multiple Myeloma https://connect.mayoclinic.org/discussion/multiple-myeloma-1/
– Multiple Myeloma https://connect.mayoclinic.org/discussion/multiple-myeloma-26f521/
- Darzalex Treatment https://connect.mayoclinic.org/discussion/darzalex-treatment/

@maryaronoff
I'm on the same ship in the sense that we are among the older cohorts who acquired breast cancer... and oncologists just don't have sufficient data on us (most of us are going to die from heart disease, unrelated to the cancer). Like you, I also have chemo-induced neuropathy and it's a bear, despite 4-5 hrs. a week of exercise designed to regain balance and coordination lost to the chemo. After reading a great deal of research, and knowing that I react negatively to most medications, I chose to take half an anastrozole a day for seven years (most bc survivors quit their aromatase inhibitors within two years because of the side effects). Yes, recurrence is high for our age group, but it's also high after five years of the anastrozole at any age. Yes, they can treat the bone-thinning, but falls (made more likely from the neuropathy) still break bones which can be catastrophic for our age group. Focusing on a good diet, a healthy weight, and exercise (which can slow bone-thinning) always are important, but are especially important for those of us on this particular ship who want a longer and healthy life. There are many pros and cons regarding anastrozole and each of us has to do the research in light of our particular situation (like HER2 status, cancer type, bone density, and other health concerns) and make a decision, always with a Plan B in mind. Wishing you the best!

I just joined this group to check out others experiences with Anastrozole. I recently (Nov 6) had a lumpectomy (stage 1 DCIS) with a very tiny "micro invasion". My tumor would have been Stage 0 if there had not been any micro invasion. No radiation but a prescription for Anastrozole. I am 79 yrs old and also have Multiple Myeloma which has been treated successfully for the last 3 years. I will have infusions of Darzalex for the rest of my life - now only 1 x a month. After reading all of the horrible side effects and talking to other survivors I have decided to take my chances and hopefully live a life of some quality. My bones have thinned from the myeloma and the thought of further thinning is very frightening. I had to have some chemo for the myeloma and it gave me neuropathy which is in itself very painful and makes me "wobbly" (I have to use a cane.) I plan to talk to my Oncologist next week about this and hopefully she can help me with diet, exercise and weight control so that any cancer recurrence would be minimized if it came back at all. I would just like to live the rest of my life without everything that goes with this drug. Has anyone else taken this path and is doing well?

My oncologist doesn't say the symptoms are directly related to the Anastrazole, but he also doesn't discount my complaints. Treatment for me would be difficult as I have issues with my kidneys and any NSAID or steroid sends them into a downward spiral! I see the oncologist later in January and I intend to bring up this issue. It has become a matter of "quality of life" for me. At age "almost 75" I am wondering if I would be better off dcing this medication.

@marybe
You're a strong, positive soul and we're all rooting for you! Go get 'em, Mary!

Background-I was diagnosed with Stage IIIB ER+, PR+, HER2+ ductal and lobular cancer last June. I was put on a clinical trial which includes taking anestrozole for 6 months and then surgery. Although my K2 numbers last September showed the anestrozole was ‘activating’ the cancer cells, the tumor neither diminished nor grew. It’s still at 9cm. The first two months of taking it were rough, but after that I adjusted to it and now I sometimes wonder if I’m taking a placebo. The only side effects are some irrational emotions and fatigue, both which could be attributed to just having cancer. Im having a double mastectomy with two different surgeries, the first one on the 23 of this month. After that I’ll go back on the anestrozole