Aromatase Inhibitors: How to choose and manage side effects?

@shebell,

You might want to check out the following similar discussion:
Stopping AI and Starting Tamoxifen
https://connect.mayoclinic.org/discussion/stopping-ai-and-starting-tamoxifen/
Stop the Madness (stopped taking my AIs)
https://connect.mayoclinic.org/discussion/stop-the-madness/
I tried AIs and Tamoxifen and after serious discussion with provider and my recurrence rate, I decided to take the risk. I also had chemo, which reduced the recurrence rate.

Have you discussed the side effects or not taking any medications with your oncologist?

Thank you Laurie! I will check additional sites. I have talked with my oncologist and we are exploring other drug options. They all have such daunting side effects. I am turning 60 this year and a very active runner and weight lifter with no prior health issues so the medication struggles are a new journey for me and certainly not one for the faint of heart🥴

I switched to letrozole then switched manufacturers then did brand name. In the end, I did find a generic that I could tolerate. There are things you can try....switching meds, manufacturer or doing brand name.

Would recommend trying letrozole before stopping the AIs altogether depending on your risk tolerance. My onco was mid range and they told me to skip chemo but that the hormone therapy was a hard requirement, regardless of chemo. I cant take tamoxifen so I'm stuck with the nasty AI side effects for a long time. One onco old me Anastrozole has less side effects than Letrozole, but I know every woman is different and we all respond differently.

Thanks for this. I've been on letrozole for two years without side effects. I gather about 50% of women can tolerate AIs although many cannot. I think is worth investigating to see where you are, as everyone is different. My very rare breast cancer (neuroendocrine tumor) is not well understood, nor is there specific treatment. I had lumpectomy, radiation, and no chemo. I've outlived my initial prognosis of 1-2 years. Both my oncologist and I think the AI is pretty much the only thing keeping the cancer at bay. I'm grateful for what for me has been an easy treatment so far.

I want to second the comment on trying different manufacturers. I was on a generic anastrozole and on the verge of giving it up because of the terrible side-effects; I refilled the prescription one more time and things got better. Over the month all my bad side-effects went away; my drug store had changed the supplier/manufacturer of the anastrozole they use. I was just lucky. I would not have known that the filler/so called non -active components could make the difference between my ability to take this AI drug I needed.

I have been on Anastrazole for 5+ years now. ER+ breast cancer. 19 lymph nodes removed at age 68. The Anastrazole reduces my risk of recurrence of breast cancer by at least 50% my oncologist tells me. Now they are supporting continued use of AI meds if patient can tolerate and that is my plan. Other than being very difficult to lose weight (common with estrogen suppressant meds) I have had no other issues. I have worked with my pcp to take meds that are NOT hormone based ( the new wonder diet drugs are hormone based) and I Have lost 40 pounds since initial diagnosis. I want to lose another 20 pounds. The chemo And breast docs both agree that weight reduction and continued use of anastrazole will reduce my risk of recurrence. Pre versus post menopausal status may make a big difference so careful discussion with doctors is critical. JMHO!

Anastrazole didn’t agree with me at all. I’m 61. Tried exemastane- joints and sleeping issues. Took a break and went back on it. So far so good. I am also doing acupuncture and am on a few supplements. I’m very pleased how I feel. Not back to the “old” me . But feeling very good. I walk and yoga and breathing yoga. Everything has helped. I’m good with the “new” normal.

Yes, the side effects are terrible for many. These drugs are crippling. I switched to exemestane. It worked for awhile. However, i was in the 1% that affects the heart. I had a heart issue about 4 years ago. ER Q Cardio suspected i either had a blood clot or an arterial spasm. Asked about my exemestane.
Look into natural AIs. I was told by a certified nutritionalist that flaxseed HULLS were best.. not flaxseed meal, etc. Mushroom's are another.
I wish more oncologists would work WITH these specialists.
IMHO: the half life OF most AIs are 50 hours.Discuss with your dr if you can start a build up of every other day or 2 days on, 1 day off.
Research exemestane for bodybuilders. Their drs say no more than 3 months due to cardio issues. That might be for just men, but I doubt it.
I was on Letrozole. Couldnt tolerate it. Then to exemestane. Much better, but I think i was on it too long.
BUT MFGs do make a difference. I would look for an Israeli mfg. Seriously. I used TEVA but that was 10 years ago.
And if you need an extra dose of depression, search to purchase your drug in powder form. You will be stunned.

Yes. Good you found a different mfg. It DOES make a difference. Get to know your pharmacist WELL
Mine was willing to look things up for me and allowed me to pick her brain. She looked into the half life theory I had, said shed research it for me and call me back. She did.