I've been on Letrozole since Jan 2026 for ILC and have many of the same symptoms. My joint pain since to "float around"--that is, for awhile it's my knees, then my ankles, then another day it's foot pain. Lots of trigger finger. It seems to particularly attack areas of past injuries, like a broken ankle, or bones in my feet, but sometimes new places that have never bothered me before (knees). Like others, the more I move, the better it is. I'm finding it helpful to keep searching for the right exercise or movement for each pain. For knees, I was surprised how much it seemed to be the leg press machine at the gym that seems to help. Walking is very helpful, but it does feel at times like my legs have turned to lead. I've been fortunate to avoid the headaches. I've had extreme dry skin, even eyes and nasal passages, and am constantly having to moisturize something. I have significant osteoporosis, was pushing for Tamoxifen, but my endocrinologist pushed for me to "let my bones take the hit" for what he sees the survival advantage of an AI and "we'll deal with the bones later." I'm not sure how much "later" I have; I'm 73, and am also a 6 year ovarian cancer survivor. I'm trying to be very diligent about weight lifting twice a week, and then using Dr. Lisa Moore's Brick House Bones 52 week osteoporosis series (free on youtube) for posture, strength, impact and balance the rest of the week. I have a digital scale with a bunch of measures (fat, lean body percentage, bone mass, muscle mass) and I watch it carefully to make sure that I'm maintaining my proteing levels, and any weight loss (from a high protein, cholesterol lowering, weight loss diet created for me by my "dietiticain" (aka AI (artificial intelligence type)). I watch the trends, not any absolute numbers. I should have an idea of how much my bones are being affected after December's Dexa scan. I'm also feeling that a different AI would probably have similar effects, so I'm staying with Letrozole for now. I had no idea how much the cost of staying alive still would involve so much maintenance, and I miss my hair being thick! I just really wish there was more research done specifically on ILC; I don't think the Predict tool used is really reliable for ILC because the data is primarily on ductal cancer, not ILC. It would be easier to deal with all these side effects if there was more evidence that it's actually helpful for preventing ILC recurrence.
@angela2932 I truly appreciate the time you took to share your experience. I am so sorry it has been so challenging for you. I have been reading that ILC is getting more attention now. I hope we will have more insight into how effective these treatments are for ILC and not just Ductal. It’s all challenging. I’m thinking positive thoughts for you. Take care