Aromatase Inhibitors: Did you decide to go on them or not?

So hey...bit of a delicate topic here..lol..does anyone else poop Every. Single. Time. they go pee since being on Anastrozole?

Hi @mollyjbrown, I appreciate your posting about your experience living with Arimidex (anastrozole). For some people, it can certainly be a challenge to manage the side effects. You'll notice that I moved your message to this discussion where women are talking about tough choices: sticking with an aromatase inhibitor and coping with side effects or discontinuing the medication. It is a different risk calculus for everyone and each person experiences side effects differently. Thus, I'm grateful to add your story of how you manage the side effects and the choices you made.

@goldieshostak, you ask a very good question if your risk of recurrence is worth continuing with Arimidex. I encourage to read the post from Molly that was just added above this post. Ultimately the decision is yours. I recommend that you talk with your oncologist to discuss YOUR specific risk of recurrence.

I'm curious if anyone has used the CTS5 calculator (https://www.cts5-calculator.com/) with their oncologist to calculate their risk of recurrence? The tool is meant to be used with your doctor. You can read more about it here: https://www.breastcancer.org/research-news/online-tool-predicts-hr-pos-recurrence-risk

Anyone use it with their doc?

This is how I learned to live with arimidex. At age 61, diagnosed with stage 0 bc, 12/17, lumpectomy 1/18, radiation 2-3/18. Onc. was insistent that I try an AI, recommending arimidex. I was afraid because of possible side effects: hot flashes, night sweats, and espec. muscle/joint pain. I started arimidex 4/18.

I had muscle/joint pain during month 1 that went away during month 2. I had no menopausal symptoms. What I did have was fatigue, by Sept. at about 50% of my normal energy level. Worst, once or twice a week I would "hit the wall" with a debilitating fatigue and body aches. All I could do at those times was go to bed. This extreme fatigue was also accompanied by left arm discomfort which led me to have 2 cardiac stress tests in August, the first test inconclusive, the second indicating good heart health.

In Sept., I told my onc. that I wanted to quit arimidex due to the fatigue. She agreed that this was a significant quality of life issue. She said my choices included quitting arimidex, trying another AI, or learning to live with arimidex. I decided to stay with arimidex for a few more months. I switched taking my pill from morning to evening. The onc enrolled me in a 16 week conditioning/strength building program with twice weekly sessions with a personal trainer; I am now in the last week of the program and committed to continuing on my own. This exercise regimen helped me both physically and emotionally, and also helped with my insomnia.

My energy level is now back to about 80% of what it was before arimidex. I no longer have debilitating bouts of extreme exhaustion. Ten months in, I plan to continue with the arimidex for the present. I do not know if I will make the recommended 5 years on AI, but for now I feel that the additional protection against recurrence is worth the disadvantages of living with arimidex.

I was diagnosed with DCIS, stage 1. I had a lumpectomy in August of 2017 plus radiation and have been on Arimidex ever since ( a year and a half now.) There was no cancer in the lobe and my surgeon said I had the smallest cancer she had ever seen. My question is Do I really need to take the Arimidex since my hair is falling out? I am afraid I will have to wear a wig if I take it for the recommended five years.

I was diagnosed Stage 2A, IDC and DCIS, grade 3+, ER+, PR+, HER2-. I took 33 rounds of radiation without chemo and then Tamoxifen for 2 years, but then had a TIA last December and found to have advanced stage osteoporosis. I was immediately taken off Tamoxifen. I had the typical side effects to it, too. I was switched to Arimidex last April after I was found to have gone through menopause in 2015. My worst side effect is the bone Paine in my legs and wrists. I’m in Prolia infusion every 6 months to help with the osteoporosis (I hope). It does effect mood so I take Wellbutrin for that, but just increased the dose the other day. It’s supposed to help with the lack of energy that the depression depletes possibly from the Arimidex. Yesterday, I spent 3 hours Shopping (I HATE shopping!) so I guess it’s working. Arimidex seems to be doing its job, I’ll be 4 years NED on 2/13/19. I would say each AI has their own side effects and they have their own drawbacks and positives. Go for what works best for you.

lluna57 - Sorry you're having the side effects too. This isn't scientific in any way but it seems if many breast cancers are hormone positive in some way then our hormones have been working overtime and by adding a pill that alters that yet again....side effects would be the result. I hope that someday research will begin on the hormone imbalance issues that may contribute to breast and ovarian cancers and all the other related maladies some women suffer. My whole life has been the 'poster child' of imbalanced hormones. I enjoy studying breast cancer, the drugs and their effects but there isn't enough information available to the public or patients on exactly how the AI's function. Also, I haven't gotten any detailed information from my doctors. I wonder what other functions those AI's perform to stop cancer and why they create the sometimes dramatic effects in many women.
I too had bones of steel at one point....ha ha. Now they are more like bones of tin perhaps, but only due to my natural hormone decline. The AI's hasten that demise in some way by removing estrogen and progesterone I guess. I do hear that the pain we experience from them goes away once you stop the drugs but I have also had my doctors say they'll just give you another pill to remedy the bone loss..........it's a sort of cascade of pills.
We all have to choose between the cancer and the side effects. I'm hopeful that the next generation of breast cancer patients will have more and better options.
I have my six month check up this Tuesday and I will try to get more information on the AI's and long term effect and perhaps more about how they work. I will share anything new I learn. If anyone else on here has more information, please share. I know I'd benefit from a clearer understanding of the meds and long term effects.
Hugs!!

@cindylb, I also had ALL of the side effects. When the doctor started telling me about the side effects, I didn't really listen, because I have never had side effects from any drug I have taken. About a week after starting them, I was trying to get out of bed and noticed my fingers were really stiff, and then remembered him saying something about that. In week 2, it got worse, much worse and it has continued on since. I am trying 3 weeks on and 1 week off, and hoping that each time I start it again, some of the SE will dissipate. My main concern is with the lasting effects on my joints. I understand bone loss is a given, but I am wondering if, after I stop taking it, will my joints be OK. Luckily, I had great bone density, and never had a joint issue to speak of, now however, when I finish these meds (at my time to retire), am I going to be able to resume all of my activities.

Are you still taking this pill daily or did you stop taking the pill ?

Today Is my two year from lu mpectomy for stage 2......I have done nothing else as I am now 82, and felt al hormone therapy made me feel awful with just one pill!!! And I have had osteoporosis already......so far no recurrence.

Welcome new members, @nanato6 and @mimi99, you may also be interested in this discussion about anastrozole (Arimidex) and other aromatase inhibitors.

- Concerned about the side effects of anastrozole https://connect.mayoclinic.org/discussion/i-completed-all-treatments-for-breast-cancer-but-now-i-am-supposed/

I agree with @elvandi. Second opinions, and even third, can help with decisions that are right for you.