Anyone switch from Aromatase inhibitors to Tamoxifen?
I have tried anastrozle, letrozole and Emestane with terrible side effects (joint pain/damage, teeth pain extreme dry mouth, vaginal and uniary pain...)
Now possibly Tamoxifen but I am doing my research. I am seriously thinking not to move forward with the Tamoxifen due to my quality of every day living. I am 69 had stage 1 invasive ductual carcinoma BRAC2. Mastectomy, will have ovaries removed this month. I would like to ask those with the same decision to make what questions did you ask your oncologist to help you decide? Thank you for your input
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I'm 71 and stopped anastrozole after 9 months because of joint pain, fatigue, brain fog ...
Ask oncologist what your predicted rate of recurrence is with and without AI or Tamoxifen. My recurrence chances were 8% with AI and 16% without. So 84% chance of no recurrence over the next 9 years. Best wishes to you as you make this tough decision❣️
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6 ReactionsThe last AI I was given was letrozole which I haven't taken yet. I took Exemestane, and Anastrozole. My teeth are now a mess as it affected my jaw bone. I am looking into extensive dental work.
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1 ReactionI'd like to hear of what your learn in your research, 16Bernie, on tamoxifen. I have started that too, but too many joint impacts so I've cut down to 5mg, which my Doc doesn't approve of. I too tried two AI's and even though it helped with shrinking a tumor somewhat, within 4 months it gave me labile Hypertension, which is SO troublesome now & really affects my day to day life. My BP can shoot up to 180 or 190/100 on any given day, and I have to load on the BP emergency drugs. Not for anyone with cardiovascular problems. I tried Fulvestrant shots, but that gave me terrible leg aching & finally a leg rash, so I quit. My feet swell now, so I have to check to see if I've developed Venous Insufficiency. I'm doing a lot of weighing now between "do I want to try to beat this recurrence (maybe!) at ANY cost to the rest of my older body, or do I want to stop all these darn meds and enjoy my current energy and abilities as long as I can. Do I have to trade one health problem for several others???"
Anyway I'm noticing the low dose Tamoxifen seems to be giving me joint pain still, even head & neck, so I'm probably going off it. My next possible treatment may be Proton radiation, am checking that out. Quality of everyday living is important as you said.....I'm 76.
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1 ReactionIt will be 2 years in March that I started Anastrozole. I did go through some side effects and at one point I was considering stopping, but the side effects were becoming tolerable. This past fall I started having terrible symptoms, I always felt angry, depressed, I was having heart palpitations, my hands looked and felt like they were crippling, I had burning sensation in my hands, feet, under arms, scalp, vaginal area, I had insomnia and blurry eyes. I could not figure out what was happening. I searched a lot online and there was a post from someone that said when the brand of their Anastrozole was changed, the side effects were unbearable. I looked back at my prescriptions and the pharmacy did switch brands in September and that was a 90-day supply. I had communicated to my oncologist the symptoms I was having and he told me stop the Anastrozole for 2 weeks. My hands felt 95% better after 3 days and the palpitations stopped. The other symptoms have subsided significantly. I am back on the brand that works for me and I am slowly feeling like myself. When I talked to the pharmacy about the symptoms I was having, I was told that they had another customer that had the exact same symptoms, from the same brand, that I was taking. So if any one notices a difference in how you feel after being on medication for a while, please check the brand.
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2 ReactionsI was 65 when I was diagnosed and am now 71, I was on 3 different AI's. The last one they gave me was letrozole and I haven't touched it yet. They cause necrosis of the jaw and I am dealing with that now. I'm done!!!
@sally484 Hi Sally, May I ask how long have you been on letrozole that caused you to have necrosis of the jaw? I have my dental work done before started the letrezole. It has been 6 months now. I don't have a dental issue yet. Thanks for your information.
I wasn't on letrozole.....I was on Exemestane. I have letrozole now, but haven't started it yet. I'm a little leary of all these AI's.
Thank you. I am trying to figure this out…evasive lobular carcinoma