Aromatase inhibitors versus tamoxifen
I had a double mastectomy in October of 2023, radiation, fortunately no chemo.
I began an aromatase inhibitor, Anastrozole, in January of 2024. At about five months in, I began to experience joint pain. It wasn't bad, just a little annoying. As the months passed, it got a bit worse, so my doctor switched me to another AI, Exemestane. A year in and I am EXTREMELY uncomfortable, a lot more pain. It is making day to day life frustrating. The most painful are my hands and wrists. It makes it hard to do my job, do things around the house, play/pick up my grandchildren….
I have tried using Celebrex to offset the pain - no dice. I have changed my diet. I take omega-3. I hate taking so much pain medicine, so many supplements, another prescription.
The alternative is Tamoxifen. I have only heard negative things about it and I am scared to make a switch. I am looking to see if anyone has anything positive to say. I do not want to make my situation worse.
I am grateful to be here. I am thankful to not have had to go through chemotherapy. I am so fortunate to have a husband (my rock) and family who take great care of me. I stay as positive as I can using these gratitudes daily. I think I need a different direction, though.
Thoughts?
Comments
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Unfortunately 40% of people are genetically predisposed to cartilage damage when taking AIs. That is what causes the joint pain. Stopping AIs doesn’t cure the damage but prevents it from getting worse.
Tamoxifen has its own set of side effects but cartilage damage isn’t one of them. People don’t get every side effect listed but things like increased chance of blood clots need to be considered with your medical history in mind.
It would be wonderful if there were an SE free option but that’s not the case. Good luck making the best decision for your situation.
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After about 5 months Anastrozole made me very ill. Could not eat without feeling sick and things just hurt. Dr. even said things like , you will get used to it. They would not listen to me. The also ignored my swollen arm. After trying to work with them for almost 2 years with no improvement, I changed clinics. My new Dr. put me on Letrozole and sent me to a lymphoma Dr. for my arm. I am doing much better and am getting treatments for my arm. Delaying the move was detrimental and may even cost me years of survival. New Dr. considered my cancer aggressive since at a stage 1 in size it was already in my lymph nodes.
ask your Dr. about letrozole.
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I have had next to no side effects from tamoxifen. Maybe slightly sluggish gastrointestinal tract but really nothing else. I think chemo put me into menopause so had some hot flushes from that but they settled down (I still feel warm generally but this now feels normal for me). No mood changes. I had quite bad insomnia following diagnosis but I think it was the shock as it has gradually improved. I work, bring up my children, clean the house, exercise daily and have plenty of energy for all of it.
My oncologist is rethinking his plan to switch me to an AI for my second five years of hormonal therapy. He certainly perceives AIs as less well tolerated than tamoxifen in general. And since I have been fortunate with tamoxifen, any side effects at all would be a backwards step. We are going to make a final decision in the coming year. He rolled his eyes when I asked him about all the side effects I'd read about here before I started it…
It breaks my heart when I read of women not even willing to try hormonal therapy. I am very grateful to live in a time when it exists.
Good luck with whatever you decide. It sounds like there is a good chance the tamoxifen will be an improvement for you.
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I have been taking Meloxicam for joint pain.
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I was put on 20mg tamoxifin after my active treatment finished. My Dr. said I could switch to an AI but after talking with people who have had bone issues on it, I asked to stay on tamoxifin. It's impossible to tell which of my side effects are menopause (tired, hot flashes, constipation) but overall, these effects are manageable and it has been ok for me. It was suggested to me to take it at night since it can make you tired and that's what I've done. Good luck with finding something that works better for you.
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You mean "lymphedema," not "lymphoma" doctor for your arm.
And I know this sounds like a petty quibble, but I don't understand how people come up with all sorts of alrernative spellings for "tamoxifen"—especially when the drug name is printed right there on the bottle.
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I have been on Tamoxifen going on 12 years now. I was diagnosed at 41. I have been blessed to not have any side effects on this drug. I was so worried when I began - but everyone handles things differently. I am pre-menopausal and do not look forward to changing drugs once my body goes through the change. All the joint issues I have read about. I am just taking it a day at a time and enjoying not having any side effects on Tamoxifen!
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