side effects of AIs

Hi there! I was on Anastrozole for almost six months. During that time, I went from being okay with it... to becoming a danger to myself and others. (The primary issues were cognitive disturbances, horrendous joint pain, and worrisome increases in markers for cardiovascular disease.) I don't consider Tamoxifen to be an option for me, as cardiovascular disease is a much bigger issue in my family than cancer is.

Honestly, I don't know if it was even really necessary for me to take it. My hormones became very low with menopause, which inspired my doctor to encourage me to use BHRT. So, I was on estradiol, progesterone, and DHEA for a number of years. I went off of the hormone replacement as soon as I was diagnosed. I went off of Anastrozole a few months ago and decided to let my body self-regulate with lifestyle changes. (I did lots of research, and I'd encourage you to do your own to figure out what's right for you). I exercise seven hours per week, eat an enormous quantity of cruciferous vegetables, and drink lots of green tea, all of which are supposed to help keep hormone levels down. I also avoid sugar, soy products other than organic tofu, and unnecessary chemicals, and I eat mostly organic food. I just had my blood work done - estrogen is <5, and progesterone is .1. It can't get much lower than that!

I rehearsed a speech with my oncology nurse to prepare to deal with my doctors. Interesting note...I read that grapeseed extract is good for lowering hormones (in a larger dose than what has been used in scientific studies). Within a week of taking it, I began to have the same side effects as I had with Anastrozole. I understand that there is a concern about having too much estrogen and progesterone, but our bodies need SOME hormones to function properly!!

Again, please do your own research. The demands of your body and your life may be very different from what I have going on.

You might want to check out this thread regarding your hand problems:

https://community.breastcancer.org/forum/78/topics/872097?page=1

I need some insight and help. I was first placed on Arimidex (generic) and after 10 months had to call it quits due to intolerable side effects. After a 30 day break I was switched to generic femara (letrozole) and in the past 2 plus years the side effects have gotten worse to the point I was referred to a rheumatologist due to severe joint pain. I have had severe back pain only on right side (not BC side) that I have had 2 thoracic and then 2 cervical epidurals with no relief. I use topical lidocaine (prescription strength 5%) patches and alternate this with voltaren gel. I am currently taking 600 mg of Gabapentin at beditime so I can fall asleep. I do not stay asleep because of back pain, knee pain and hip pain that disrupts my sleep and my daily routine. I am active but find that the back and knee pain become worse with exercise so that even standing is very uncomfortable and sitting is unbearable.

I am on Methotrexate for what my rheumatologist thinks might be RA but is more inclined to think my agonal pain is from the femara. She is reluctant to make the recommendation that I stop the AI. Some of the joint related se are: plantar fasciitis, left wrist carpal tunnerl (already had surgery in the past for this), development of nodules on hand tendons resulting in locking fingers; hand, knee, finger and foot pain and joint pain in the AM that takes about an hour to become bearable.

My MO wants me to take a 2 week break from femara and then start exemestane which I am reluctant to do. Other se of the AI's have included a weight gain that has remained strongly cemented to my body no matter my activity level and diet changes, hair loss, continued hot flashes at night that drench me and disrupt sleep, and this relentless back pain. I have just over a year to go on AI's. I do not want to stop because my fear of this beast of BC but if the exemestane doesn't cut it, the last option is Tamoxifen which I do not want to take due to concerns about those side effects.

My MO mentioned again that some study found that 5 years worth of an AI offers some protection for up to 5 years post- treatment. I asked for more details because I have not been able to find data that supports this. Does anyone know anything about this post-treatment protection?

Has anyone else had an experience like this where you ahve run trhough all the AI's? Right now my fear overrides the se but I am not sure if I can make another year. Any feedback would be appreciated. Thanks.

I feel your pain. This is year 6 for me and I feel the first couple of years wasn't bad. Lately the joint pain has been pretty bad. My oncologist wants me to continue it for another 5 year and thinks the joint pain is just arthritis. Which it could be. I'm going to stop on my own for 2 months and see if this joint pain gets better. I feel like I've done the first 5 years so at least there's that. I've read some articles that say the overall survival rate for 5 vs 10 years is about the same so I'm torn. I'm 58 and some days feel like I'm 80. I have things to do! grandchildren to babysit! Letrozole is what I'm on. I don't get how they say just stop it for 2 weeks and you can tell if the joint pain is from that...don't you think it would affect your body a little longer than that? Also I've been very fatigued lately....lol...hope this helps. P.S. the joint pain is in my hands, fingers, knees and feet.

I started with Arimidex. The mouth sores were so bad that I could not eat. Then I went on Femara. The sleeping problem was better. I use aromatherapy with a diffuser of Lavender essential oils. The itching with the night sweats is terrible. You must drink a lot of water. I am tempted to go off of it but I do not want the cancer to return. I findbenadryl helps. But I hate the drowsiness. I use Eucerin