Concerned about the side effects of anastrozole

I was on Arimidex for over a year and a half, and finally the side effects became intolerable for me. I understand this is not true for everyone. After 9 weeks off the Arimidex, my Oncologist switched me to Exemestane . After 2 weeks, the side effects of the Exemestane became similar to the Arimidex. Again I'm taking a month's break and have an appointment with my Oncologist in December. I'm 75 and trying to decide if I want to stop the drugs altogether or try Tamoxifen. I have osteopenia and moderate to severe arthritis in multiple places. I'm hoping my Oncologist can help me with my decision.

I wish you all the best of luck making this decision. After 3 weeks on Exemestane, my hands feel better. (so It's been 4 weeks since I took Anastrozole). They also told me 5 to 10 years on the drugs. But I'm only 64 now & just passed my 1 year mark. I hope the doctor has a frank talk with you about your side effects and your chances of recurrence. You have to trust them, even though it's scary.

Thank you Kathy.

@kathyomaha55
I am 68 now and went off anastrozole after a short periods of time and letrozole due to the severe bone pain. My doctor let me take a break and then started me on exemestane...what a difference. I can now walk without severe pain in feet and ankle, elbows, hands, etc. I have recently switched from taking it at night and now take it in the morning. I was having insomnia after sleeping 2-3 hours. Now that I am taking it in the morning, I sleep 7-8 hours a night...hoping that will keep up! I also go to therapeutic water exercise twice weekly and find this helps with arthritic pain.

Thank you for the update and your good news. Please keep us posted about your bone scan. I am just seven months on Anastrazole. You give me hope!

Thanks for sharing about your journey. As you will know from this group there are four or five options for estrogen blockers, so i hope you can find one that works for you. Please keep us posted. Denise

i was on anastrazole for 5 days and Mayo had me stop it completely the side effects were very severe. i was quite nervous about taking other aromotase inhibitors because my reactions were so severe. They started me this year on Faslodex, which is a monthly shot. thus far my reaction is fatigue the day of the shot and a sore tush as it is a thick shot. tylenol helps to relieve the pain and my tush only hurts for a day or two. somewhat new on the market, but it works for me. upside is it only once a month. downside is that as i am so sensitive to estrogen that i must get it every 28 - 30 days. for those of you who take aromotase inhibitors it may be worth looking into this if your side effects are not tolerable.

I have been an active member of this discussion for quite a while and so I thought I'd share here a new complication I am experiencing with my breast cancer 'recovery'. First, yesterday was my four year anniversary of my bi lateral mastectomy and I'll have my check up in December and hope that I am four years cancer free.....that's the good news! Unfortunately a little over two weeks ago I got cellulitis in my left hand (from a tiny, itty bitty cut) and I went into sepsis. I was hospitalized for 6 days on IV antibiotics and released on a long term IV antibiotic. I am allergic to antibiotics, so it's been a huge challenge. Every oral antibiotic they add to help my recovery (which is slow at best to kill the infection) has sent me to the ER with an allergic reaction.
The cellulitis is in the left arm that had some very mild lymphodema (that the doctors were very slow to acknowledge due to the fact that only one lymph node was removed during surgery). I thought I had the lymphodema in decent control after a scar revision surgery 3 years ago, but I think maybe not.
Anyone experience cellulitis or sepsis from lymphodema or? I'm finding it hard to get more information or support (and the doctors are of course focused on killing the infection and struggling somewhat). Looking for input wherever I might find it. Thanks!

I haven’t had that happen, but it is precisely the kind of problem that I’m on constant vigilance about. I am 3 years post-bilateral mastectomy— congratulations on your 4 years! My cancer surgeon only reluctantly signed a referral to a lymphedema therapist because he said only about 20% of his patients develop lymphedema. 🤨 And I changed primary care physicians because one of the people on her staff literally argued with me when I said “no BP cuff” on my affected arm!
I do work with my lymph therapist on risk reduction... for example, I wear (Solidea low compression) sleeves anytime I do anything that might stress my (also left) arm (and I keep spare sleeves in my purse and car for unexpected “opportunities“), I do MLD massage on myself, I carry antibiotic cream and bandages at all times to put on any little nick or cut. I had 20 lymph nodes removed. I am taking your struggle to heart. Good luck! I’ll keep thinking of you.

@charon @cindylb
I did have lymphedema, although atypical where it was a clogged vein all the way to my wrist. My doctor referred me to a physical therapist that specialized in lymphedema and was great. It was quite a painful process with about 6-8 follow up visits where she had to pull and strip that vein but finally it is unclogged and the expectation is that this won't happen again. I also follow the physical therapist's exercise program. I was ready to purchase a compression sleeve, but was advised that those can also kick off lymphedema for someone that doesn't have it. I do have a gardening sleeve I wear for outdoors for protection as one little nick can start an infection. I think the main thing here is to be ever vigilent.