Life after Anastrazole

I have written this message in response to Mollyboo's original post that can be found here :https://community.breastcancer.org/forum/6/topics/...

I've decided to repost it here since this topic is more frequently read by those taking hormonal therapy. I hope that some can find cause for optimism in wading through this (very) lengthy post.

"nottoday, your post encouraged me write.

Mollyboo's original post was just what I needed to hear when I was struggling to continue taking Anastrazole for the final 6 months of my 5 years. I was terrified that the side effects would persist, even after discontinuing its use. As the end came within sight I badly needed reassurance that things would, or at least could, return to a semblance of what had been normal for me pre-BC. Mollyboo's message gave me hope when I needed it most and I'm attempting to pass the favour on. I've now been off of the AI for almost 5 months and my life continues to improve.

This is what I've noted so far:

• my brain fog is clearing. My thinking is clearer and quicker. My ability to focus has returned so I'm returning to my previous voracious reading habits. My short term memory is more reliable.

• my mood has lifted. It seemed stuck in neutral, with neither highs or lows. I'm able to experience joy again after 5 years of feeling that I was wrapped in a grey, prickly blanket that was insulating me from happiness. I've rediscovered enthusiasm. My sense of humour is reasserting itself. The temptation to isolate myself socially has diminished. People tell me spontaneously how happy I look.

• my joint pain is greatly improved, although not totally gone. My mobility isn't as compromised and I'm expecting to further improve as I work my way out of 5 years of relative inactivity. (Please don't tell me that if I'd exercised during taking the med it wouldn't have been so bad. Attempts to push myself through the pain to exercise inevitably made things worse.) My bone pain is gone without using Claritin daily. I can get out of chairs without grunting and groaning. I hope to be able to return to gardening in the spring because I can squat and kneel again.

• Trigger fingers are gone. I'm able to grasp with more strength. I'm able to walk over rough ground with more confidence now that my ankles and knees are more reliable.

• my energy levels and stamina continue to improve.

• my libido is back, much to my husband's surprise and delight. Not only has my desire returned with gusto, my nether parts are well lubricated and fully functional. (Sorry if this is TMI.) I reached a point where I had an aversion to being touched at all and that, thankfully, has disappeared.

• my hair has returned to its previous condition, thick and healthy. My scalp is no longer visible and my hair is no longer dry and straw-like in texture.

• my body temperature has re-regulated. I'm back to wearing a coat in cold weather rather than sandals and a tee shirt. I can cuddle up next to my husband without the threat of incinerating both of us.

• my eyes are less dry and my blepharitis has improved.

• my mouth is less dry. My gums are considerably healthier with no change in dental hygiene habits. The mobility that had developed in my back molars has disappeared.

• I'm not as bloated and my peripheral edema is much improved, at least in my ankles and feet. Unfortunately bilateral arm and truncal lymphedma, unrelated to AI use, will be a permanent legacy of BC.

• my blood pressure, which shot up within a few weeks of starting Anastrazole, is now having to be re-regulated with medication changes. It's a work in progress.

• constipation, not a problem prior to AI use, has not improved.

• my weight, an issue prior to AI use, remains, though I feel that I now have the emotional and physical wherewithal to tackle it.

Since I had neither chemotherapy or radiation, just (just!) a BMX, I put my head down and stoically lasted the course.

As a footnote I'd like to say that these SE's are real and are much more frequent than many in the medical community care to admit (my MO for instance). My SE's came with AI usage and most are leaving with its discontinuation. I'd like to say to the cheerleaders who downplay possible side effects in their enthusiasm to encourage compliance with AI therapy - please stop blaming the messengers. It's not helpful. Those who are struggling to stay on the medication, or have made the extremely difficult decision to discontinue it, are deserving of validation and support, not the implied message that it's all in their heads or that they're just not trying hard enough. Education about possible side effects and their management should be the least we can expect from our medical practitioners but, all too often, it's ignored."