Concerned about the side effects of anastrozole

I just started Exemestane like 6 weeks ago. What were the side effects you had - if you don't mind me asking. I was on Anastrozole previously like for 11 months. My hands hurt so much it was unbearable.

Hi Trixie, I've posted several times about my bad experience with Anastrozole. I then went on Exemestane and had some negative side effects. Currently I'm taking a break from all the AIs and am scheduled to start Tamoxifen in January. I'm 75 and I'm very worried about blood clots with that drug, though. Does anyone have experience with Tamoxifen or have any credible information about the possible side effects?

I hope you see a difference. I was on Leterzole and had same problem. I even had a cognitive test, I though maybe I had start of dementia. Been off for 2 weeks and huge improvement. I start this weekend on exemestane, hoping do not have same problem.

Everyone reacts differently to AI, I have had no joint pain, but the fatigue and cognitive issues caused me problems. See discussion topic on Chemo Brain for more info: https://connect.mayoclinic.org/discussion/cancer-related-brain-fog/

Laurie

I am on that medicine and now the Dr said to stop for three weeks because I have noticed my memory and concentration has gotten very bad then we will try a different med

I met a lady who has severe Lymphodema on her left arm - she said she is always vigilant as any slight injury, causes her severe cellulitis. She is also a BC survivor - but they took out 29 of her 30 lymph nodes on that arm, like 15 years ago. So she still has problems. All of her nodes were negative - but maybe that's what they did back then. Seems like the surgeon was crazy to me. Good luck & she was wearing a compression sleeve.

@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.

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.

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 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.

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