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

I took Tamoxifen back in 2003, when I had DCIS. I took it for 3 1/2 years. I told my oncologist it was affecting my hair. If I remember correctly (that was many moons ago) my hard turned dry and brittle breaking off. My oncologist said take a break from Tamoxifen- if your hair gets better you can stop tamoxifen & if not just finish out the 5 yrs. I just quit it after the 3 1/2 years. My hair turned healthy again.
What is interesting is the oncologist I’m seeing now told me they did a study / he said probably 20 yrs ago - that on the same timeframe I was taking it - & the study showed no effect on hair 🤷‍♀️
We have to do what is best for us & our bodies …and … Quality of Life.

Thank you for your reply, Sequoia. I'm interested to know I'm not alone in my experience with Tamoxifen.

@sparklegram You are not alone. Hang in there. This forum- as I think you know- is very supportive as well as knowledgeable. Keep in touch. 🙏🏼

Din’t know what to say. I was on Tamoxifen for 1 1/2 yeas. Terrible digestive issues! Changed diet, exercised. Was finally diagnosed with gastritis. On medication for that. Was switched to Letrozole. If I take full dose after a couple weeks digestive issues return. After so long I just have to take a break. When I am not taking the Letrozole I feel great! Have talked about trying one of the other AI but oncologist thinks side effects would be the same. Oncologist does not think Letrozole causes the digestive issues. However, gastroenterologist thinks it does. Have at least 2 1/2 years years more to take an AI. Just so hard to know what to do.

AI is definitely a cost vs benefit decision. You may need to get the two doctors having a conversation. I also think being more assertive about side effects is required sometimes in order for the doctor to hear you. I am sorry you are going through this. I think we have all felt frustrated at times with getting our doctor to hear us.

I'm taking Tamoxifen. It's not been a year yet and my hair has thinned a lot. Enough that my hairdresser brought it up and suggested Rogaine. I was hoping the fallout was due to being under anesthesia multiple times. My oncologist said I could take a break to see if side effects such as joint pain improved but was quick to let me know that not taking it wasn't an option. So, I see no point in taking a break and will continue onward.

I have been on Letrozole for 3 months now. Mild hot flashes for first 10 days, then joint pain in hips set in. Varying degrees, from maybe 2 to 6 pain level, unpredictable; some days mild, some days quite intense, also changing during course of day (and sometimes enough to wake me up at night). Chain reaction: hip pain caused my pretty much under control Sciatica to flare up again, which in turn caused me to tighten up some muscles, which threw my gait off, which caused more joint/muscle pain............................. Thanks to “my” PT guy who has taken care of me after assorted orthopedic surgeries I have now strengthened/relaxed hip and thigh areas to the point where I am close to ok again. As far as gait is concerned. Joint pain of course will continue. If it gets any worse, I may ask for a short break from Letrozole. My mother died of metastatic breast cancer, so I try to follow oncologists recommendations to lessen the chance of this happening to me.

Have been taking Arimedex for 3 months. At the 2 month oncology visit, Dr. said if I was not having side effects at 2 months, I should be OK. At the visit I also qualified for a Covid booster (Moderna). I'm 74 so my joints ache anyway but in the last month have had a dull headache/neckache. Taking ibuprofen helps. I was told by 2 oncologists that with the early detection and type of breast cancer I have, if the AI side effects were too much, I could quit. Sigh. Will give it another week. Wondering if it's the booster or the AI or both or neither!!

I had HR2 cAncer. This was the 2nd time I had cancer. My issue with my AI, Arimdex, is that my joints hurt and I fell like I am back menopause. I also have Sjogrens which gives you joint pain. Rheumatologist feels the joint pain is worse due to the Arimdex. I think about this and at this point I just don't want cancer again. So I take it every other day.

I have posted before about this, my side effects from Anastrozole were not severe until I had been on it about 18 months. The joint pain and stiffness was so bad I couldn't walk, I now have osteoporosis, and had so much trouble sleeping that I was only getting three or four hours of sleep a night. I stopped taking it in March and it has taken this long to feel better, I still have days where I am very fatigued but am sleeping so much better. This decision is not for everyone, it will be two years since my surgery in December, I go in every three months for an exam and blood work, for me quality of life and being able to move were the deciding factor. I have no interest in Tamoxifen and feel switching to a different type of drug won't help. It's a journey, I am 76 years old.