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A MyBCTeam Member asked a question 💭
Fort Branch, IN

Mixed emotions about taking arimidex or femara I have a lot of side effects. I know someone who took it like a few days being 5 years and her cancer came back...then I know someone who stopped taking it after 2 years and it has been 8 years and she is still cancer free..I,am stiff, in pain, gained too much weight, crying, can't think at times, can't concentrate...feel 90 and I am only 52..discouraged..quality of life vs quantity of life.

June 2, 2014 (edited)
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A MyBCTeam Member

I took tamoxifen for 5 years and was told at 10 years I was cured. Five years later (18 months ago) I was dx with stage IV mets in my bones! So I would def say that it held my cancer off for 15 years but NOTHING is an absolute! I experienced weight gain and had to have a hysterectomy bc I developed fibroid tumors that led to excessive bleeding. I also had hot flashes, night sweats etc. would I do it again, yes bc I went 15 years in remission! Today I take letrozole (Femara) to help decrease cancer activity. I have severe hot flashes, night sweats, dizziness, neuropathy pain in hands, wrists and feet. But It seems to be working really well in my cancer fight. Good luck in your decision. I'm 58 and looking at maybe six more years, unless I can go into a place where my cancer activity decreases more. I will never be in remission! Hugs and prayers as u make your decision! Lynn

June 3, 2014
A MyBCTeam Member

I am on Arimidex aka anastrozole....I have bone pain, stiffness, hot flashes day and nigh plus prickly heat all day and night ! My sister took tamoxifen for 5 yr result imp in a rare mixed mullerian tumor, endometrial / uterine cancer....directly caused by taking tamoxifen . She recent died a horrible, painful death from it. It was really terrible she was very weak and emaciated. Thus, I refuse to take tamoxifen !!!

June 3, 2014
A MyBCTeam Member

I quit hormone therapy and never looked back after my doctor took the time (at my request) and ran the card cold numbers for me with https://www.adjuvantonline.com/index.jsp you deserve to find out just how much benefit this is giving you. In my case 1% was NOT enough for me to be miserable.

June 4, 2014
A MyBCTeam Member

Side effects and recurrence are really tricky. Don't rely on single cases and stories from friends to make your decision. You will only hear the horror stories. Successes are no fun to relate. Well meaning friends do not realize that they may be swaying you away from needed therapy. I would never have done any treatment at all if I relied on the stories of side effects and the effects of treatment from everyone I told about my cancer except my family and my doctors. None of the horror stories happened to me. The alternative to treatment is to die...no thanks.

No one can really predict how you will respond or what the effects will be for you. Your doctor has the scientific evidence for the effectiveness of the drugs. You provide the information to him about the side effects. Let your doctor guide you. He has the most vested interest in your wellbeing other than you. You pay a bundle for the doctors expertise: ask lots of questions, before, during and after treatment.

Some of the "side effects" of a particular drug may be the ongoing results of other treatments...radiation or other chemo. Sometimes they show up later than I would think. My suggestion is to talk to your doctor and give it a try. I am having trouble stabilizing my weight but I don't have any other symptoms of problems with arimedex.

I have developed some leg and hip problems but I am sure those are the result of the lack of activity during treatment. They are responding to physical therapy and the osteoarthritis was probably there for a long time before it flared up recently.

All I can do is give the cancer as hard a time as I can. I'll hit that nasty stuff with everything I can that has any reliable scientific evidence. AND I will trust God to lead me in the path He wants me to go. He is trustworthy and knowledgeable.

February 7, 2015
A MyBCTeam Member

I was treated for triple positive HER2 NEU cancer in 2012. After chemo, surgery, herceptin and radiation, taking Arimidex has taken me down to a 2%-6% chance of the cancer returning. Please tell your doctors about your side effects. What I'm hearing from you is common. I have osteopenia and my oncologist is treating me with a Prolia shot (tremendously good for the bones) twice a year and Caltrate D every day. The mood swings/depression if you have any, can also be treated. Please get into your doctor if you become depressed, you do not have to suffer. Also, from what I'm seeing here is that people don't realize that the chemo, herceptin and radiation "mop up" any unseen cells that might be there after the surgery. Also, These cells tend get "caught in" the scar from your surgery. This is why your radiation oncologists give you the extra five radiation boosts on your scar. I have a world renown team. I trust them. Please ask your doctors about what I told you and see what they say about your case. We have an 89% breast cancer cure rate in my state. Love and prayers to all of you.

June 26, 2014

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