Life After Aromatase Inhibitors

Living with the side effects of arimidex during my BC treatment was such a challenge... rash, edema up to my thighs, joint pain. When I came off this drug and changed to Femara I thought I had hit the jackpot! I felt so much better! I have to admit that I still had issues... I looked like a "walker" from the Walking Dead as I would shuffle from the bed to the bathroom in the morning, trying to get my ankles moving! I still had joint pain and stiffness, but found this manageable. I was not happy when my always amazing lipids suddenly went out of control and I ended up on a statin! To make matters worse, my liver enzymes went crazy... my arms and leg ached until I cried and I had to stop the statin (which it turns out I didn't need with the ever changing treatment guidelines). Finally, I have completed my 5 years of AI treatment and I have been off Femara for one year, and the results are remarkable. I have no more ankle issues!! My joint pain is GONE!! My lipids are again normal and I am eating what I enjoy! And.... drum roll please.... I am more clear thinking.... the cognitive impairment that I was experiencing on Femara is so much improved. I have to confess, I had a significant degree of cognitive impairment prior to BC due to an aneurysm repair, so I was a bit foggy prior to chemo and Femara. One year later, I don't feel like Einstein, but I feel like somebody turned the switch back on!! So ladies, the reason I am posting now is to say..... there is hope for you. If you can manage to deal with the side effects, you just might get back to the person you once knew and it's such an amazing feeling. I stuck with the Femara out of fear of recurrence, but not sure I would do it again. My heart goes out to those who have unbearable side effects with these drugs. Unless somebody has walked in our shoes, they can never realize what an altered quality of life we deal with during BC treatment, but I can say I'm a 6 year survivor and feeling very blessed!

Thank you, Kathy. Thank you so much for posting this. It makes me optimistic I'll recapture some of myself that has been lost while on Arimidex. I have been on it for 4.5 years now and have many of the issues that you had plus several more.

Before going on the AI my mind was one of my best features. Now, not so much. I was fortunately able to retire a year post-diagnosis. My ability to multi-task and my short term memory, once outstanding, declined enough that I felt I was no longer able to practice my profession to the standard I held myself to.

My MO has already indicated that he won't be extending my AI therapy for longer than 5 years given the severity of my side effects, but he has given me no assurance that the side effects may abate.

You've just given me hope that the me I once was may at least partially emerge again.

I hope that you don't mind that I posted a link to this thread in the Hormonal Therapy topic. Others who may be starved for this news might miss it here.

By the way, have you had even a small stirring of libido returning?

Thanks for posting - great to hear from someone who's experienced such improvements post-AI!

I'm officially off Arimidex as of this week. :-)

I suffered a huge number of side effects and only sheer stubbornness got me through the 5 years. I won't be doing 10 years. At my wrap-up visit with my MO I gave him a typewritten list of 16 side effects, of which only one, trigger fingers, resolved by itself over the course of treatment .

Today I noticed the first improvement. Actually, it was my husband who drew my attention to it. I climbed down a flight of stairs in a theatre normally, down one foot after another, without even thinking about it. . For the last 5 years, due to joint pain, I've had to go down one step at a time, first one foot down and then the second to the same step. I had to reverse the procedure going up.I was always self-conscious about slowing down the people behind me.

This gives me real optimism that I will be seeing some of the other side effects drop away over time. I'll continue to post any changes as they come up.

I did 5 years & am almost 5 years beyond. I didn't feel horrible on it, but definitely feel better off. Yes, you will feel less stiff, less achy, less hot-flashy.....all those things. My advice is to keep exercising while you are on the AIs. Exercise will help you get through this time in better shape and decrease some of the SEs.

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.

Thank-you for this post. I have made multiple medication changes, and currently am taking Aromosin. I struggle with joint pain and swelling particularly in my hands. I had the same issues when taking Arimidex. I settled on Tamoxifen and the hot flashes were out of this world-after 3.5 years of Tamoxifen I started having significant hairloss- thus the change to Aromasin (a year ago) . I am seriously considering switching to Femera. Your post is encouraging. I have been reluctant to switch since it is another aromotase inhibitor. My hands actually wake me up in the morning- they are puffy and painful. I am unable to wear my wedding ring and experienced the same when taking Arimidex. I suffered severe problems- trigger fingers on Arimidex and ultimately ended up having surgery on my hand. I am a nurse and need my hands to function. I feel like an 80 year old women in the morning barely able to get out of bed. Being physically active helps.At the end of the day after moving all day I find I am much better. I start my morning with some yoga pilates type exercise at home and try to get some cardio in at the end of the day . I also lift some light weights. I take Celebrex twice a day and have been taking a sleeping pill- Temazepam since diagnosis 5 1/2 years ago. Thanks again for this post. I absolutely plan on staying the ten year course of treatment.

anyone who finished their AI treatment start when they were pre or peri menopausal

I've been on Anastrozole for 4.5 years. For about 2 years, my joint pain was so bad, I would stand at the top of the steps and cry as I didn't know if I could make it downstairs. But it has continually improved. One easy thing that caused a noticeable difference was taking Magnesium/Calcium supplement. I started taking it and within a few weeks, my SEs started to lessen. When I told my MO, he was afraid the AI stopped working and checked my estrogen levels. They were where they should be.

Another great plus with Magnesium was it lowered my heart rate. I had many, many heart issues during Herceptin and Chemo (heart attack and permament heart valve damage with high heart rate). Magnesium is known to lower heart rate and it did mine!

I can thank an old high school friend who is an Oncology nurse. She told me most women are low in magnesium and to try the supplements. It might help my joint pain. I am sure glad I listened to her!

Thank you for the encouragement. I decided to quit Arimidex after 4 years - I am tired of the aching joints, shuffling feet, brain fog, etc - I pray that I took it long enough and hope I never get a recurrence I just found out that my osteopenia has become osteoporosis and I don't need any broken bones and I don't need to "shrink" anymore = I am already almost 2" shorter than I was as a teenager - it's time to GROW!!!

Hi Marian! I am so glad that you are still trekking! I am still moving, moving, moving and have added yoga to the mix; which, much to my surprise, I really love. This is a complement....... I think we are a bunch of tough cookies!!!

Yes, this is my fourth year of being retired and I am having lots of fun. I still do some subbing, which I love......kid time, teaching stuff (I only do subjects that I, myself, enjoy!), but no meetings, no paperwork, no hoops to jump through.....AND I can say yes or say no as much as I want. I have been doing quite a bit of traveling, and this fall survived a total kitchen remodel .

Kmpod- your post is very encouraging. Great to read that lots of the SE have gone away. Do you mind if I ask how old you are?

Has anyone stopped Alsbut still been pre-menopausal and if so, how have you faired?