Neurological Side Effects of Aromatase Inhibitors: A Serious Concern

Communities›Living with Metastatic Breast Cancer›Neurological Side Effects of Aromatase Inhibitors: A Serious Concern

GD

Community Member

3 years ago

I would like to discuss an issue that comes up on other boards I am on, which is serious neurological side effects from aromatase inhibitors. I am referring to aggression, suicidal thoughts, inability to focus, inability to sleep, anger, severe depression, wanting to do dangerous things, soaking night sweats, etc. These were some of my symptoms in 2017 that caused me to quit taking aromatase inhibitors a year after my initial breast cancer diagnosis. Fast forward to January 2023 when my cancer recurred. After about 3 month on ibrance and letrozole it was like someone flipped a switch and all those side effects came roaring back. I work out almost daily despite weight lifting and cardio as my body allows so I know that lack of exercise is not my issue. The two doctors I saw for the issue admit it is real and should not be ignored. We have enough issues to deal with. It is interesting that they differ on the actual cause. The female oncologist I saw believes some women have more testosterone than others. Since estrogen in postmenopausal women converts testosterone to estrogen when estrogen is blocked, testosterone levels increase, and women develop serious neuropsychological changes. My male oncologist believes it has more to do with changes in brain function due to lack of estrogen. I am currently being treated with effexor and hydroxyzine Pamoate because my oncologist has had success treating this issue over the years he has been practicing. He said he has only had two patients that he was unable to successfully manage the symptoms. I am bringing this up because I do not believe we should be forced to suffer because of our treatments, we should not be forced into a second level of treatment for something that in most cases can be managed with medication. I am not a fan of using one drug to treat the side effects of another but I want to stay on my first level of treatment as long as possible to give me more options later when my cancer decides to spread. Lastly, because there is almost no literature that I can find on this issue, women have no ammunition to take to their oncologists, and many oncologists are not being educated about this side effect. Thank you all for listening. Please comment and share what you know about this issue and your experiences.

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11 comments

Comment

Accepted Answer

Thank you for bringing attention to these neurological side effects from aromatase inhibitors - this is such an important topic that doesn't get enough discussion in the medical literature. The symptoms described here are real and significant, and it's encouraging to hear that some oncologists are recognizing this issue and finding ways to help manage these challenging side effects. This kind of open conversation helps create awareness and gives other patients valuable information to discuss with their own medical teams when making treatment decisions. Others in the community may have similar experiences or insights to share about managing treatment side effects while staying on effective therapies.

3+ patients found this helpful

LM

Community Member

7 months ago

Me too I started out with a bad hand

LM

Community Member

7 months ago

I'm bipolar

LM

Community Member

7 months ago

Schizoaffective ADHD, ocd manic-depressive with a side of stage4 breast cancer with metastasis in the bones and lung. This past year has been pure hell

1

GD

Community Member

7 months ago

I do not have any known mental health issues. What I am referring to is strictly a neurospychological response to letrozole

4

TB

Community Member

7 months ago

Felt like I was loosing mind. Reached out to psych dept and explained I was on AI for cancer. They prescribed an SSRI and I have a good therapist who understands the cancer TX and has been helping me work through the 'mood swings'.

3

TS

Community Member

7 months ago

I have a few side effects,but they are not to bad. I am very fortunate after reading this thread. Some sleep issues, fatigue, but not much.

1

MN

Community Member

7 months ago

Tried two different AI's with breaks in between. Severe joint and bone pain after 1 to 3 months on both, headaches. Now I have bilayer trigger thumbs I have to have surgery on to function. I have tried tart cherry, Claritin (but not hydroxyzine) and Tylenol. Just stopped them and started on Faslodex. It sucks because I don't want to blow through these treatments, but to say QOL is maintained is a gross understatement.

GD

Community Member

7 months ago

Sindari. Have you tried increasing the amount of exercise you do. I work out 4 times a week for about an hour each day. It really helps with the joint pain and can strengthen the bones.

1

MN

Community Member

7 months ago

Glenda, nothing formal, but do go on walks almost daily. I do need to get moving more. Like the tin man, it does help keep things lubricated.

1

GD

Community Member

7 months ago

Sindari. Try doing some upper arm movements as well. There are some good YouTube videos to help you get started. Also, Google exercises for your thumb pain. I found some very helpful movement for my hands. I rarely have pain.

2

CA

Community Member

2 months ago

Thank you for bringing attention to these neurological side effects from aromatase inhibitors - this is such an important topic that doesn't get enough discussion in the medical literature. The symptoms described here are real and significant, and it's encouraging to hear that some oncologists are recognizing this issue and finding ways to help manage these challenging side effects. This kind of open conversation helps create awareness and gives other patients valuable information to discuss with their own medical teams when making treatment decisions. Others in the community may have similar experiences or insights to share about managing treatment side effects while staying on effective therapies.

Neurological Side Effects of Aromatase Inhibitors: A Serious Concern

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