• Oncologist denial of Arimidex side effects

    Asked by loracy on Tuesday, May 21, 2013

    Oncologist denial of Arimidex side effects

    I started Arimidex a month ago and immediately started having daytime drowsiness, increased neck, shoulder and wrist pain, as well as dyspepsia and headache. My oncologist denies that any of those are legitimate side effects and attributes it to getting older. So how would you approach this?

    18 Answers from the Community

    18 answers
    • Peroll's Avatar

      When you have a side effect that the Dr insists is not from a drug you can look up the Drug on the internet and usually get a complete listing of side effects that were noted in trial and clinical use. Arimidex can be found at: http://www.arimidex.com/ this allows you to check for your self. Just because there are no reports of a side effect does not mean that it was not caused by that drug and conversely your side effect might not be caused by the drug even if the side effect has been reported. It is also possible that your side effect could be caused by interactions of Arimidex and other meds you are taking. In any case the Dr should not just dismiss the side effect. In any case they should be able to offer way to mitigate these effects if they impact your life. Good Luck!!!

      over 3 years ago
    • SueRae1's Avatar
      SueRae1 (Best Answer!)

      Get an 2nd opinion ASAP. Chemo drugs have many side effects, and they also interact with medication you may be taking for other conditions. I am concerned about the cavalier way your oncologist is handling this. if it were me I would be look for a new team.

      over 3 years ago
    • SueRae1's Avatar

      I just googled the side of Arimidex here's the link. yes your side effects are listed.

      over 3 years ago
    • karen1956's Avatar

      When I was on Arimidex, I had horrid joint pain and developed CTS in both wrists.....my onc was empathetic, but had not heard of CTS being a side effect.....but soon after it was listed on the insert and i shared an article with him regarding side effects...I also called the drug company and they had to report the side effects to the FDA.....
      If you don't feel that your oncologist is listening to you, are you comfortable in looking for a new oncologist? Mine listened to me, though he wanted me to stay on them, after enduring side effects for 3 1/2 years, I finally said enough is enough....my onc still asks me if I want to try them again and I always say NO......I think you have to feel good about your onc, even if you don't see eye to eye on things....if you don't then its time to find a new doc....

      over 3 years ago
    • Nomadicme's Avatar

      Some oncologists are duds and should be fired. If a Dr doesn't listen to legitimate concerns, it's time to get another. I had weird eye side effects from chemo, my onc was smart enough to listen (although there was nothing to be done). In your case there might be another AI that will work better for you, and if that failes then Tamoxifen (that although not as effective still kicks a).

      over 3 years ago
    • SandiD's Avatar

      First, remember your doctor works for YOU! I had terrible joint pain with Arimidex after 6 months and switched to Aromasin for 2 years. Because I still had pain, just not as bad, my oncologist suggested I try Femara which is much better. There are 3 Aromatase Inhibitors. You should be able to find one that works best for you. You can even go back to one you tried. You can find helpful info at www.breastcancer.org. You must feel confident with your oncologist. If necessary, get a second opinion or a new doctor. Bring someone with you if you don't feel strong enough to confront your doctor. I am sorry your doctor is not more understanding. Good luck!

      over 3 years ago
    • DrShani's Avatar

      Hello loracy-

      Sometimes when a doctor says "That couldn't be", what s/he really means is "I don't know what to do about that." In a perfect world, the doctor would be willing to admit the limits of his/her knowledge and experience, and would refer you to someone that could help you.

      Each of us responds differently to a given medication due to genetic variations, and there is a very wide spectrum of reactions to Arimidex. You need a physician who can determine why you're having these symptoms and can address the cause, which may or may not be the Arimidex itself. This will likely be a primary care physician or internist trained in functional or naturopathic medicine, both of which focus on treating root causes rather than symptoms. If you don't know of such a professional, I invite you to contact me and I will direct you to someone in your area.


      Shani Fox, ND
      Natural Primary Care for Cancer Survivors

      over 3 years ago
    • Roses1018's Avatar

      I have been on Arimidex for about 3 months. I am very, very, tired, my lower legs are weak and hurt a lot. Have headaches at times and carpel tunnel symptoms. I cannot walk or stand for only very short periods of time. See my oncologist today. Just remember you have the choice of which doctor to go to, if you are not happy with the response from your doctor look for someone new. You need to feel comfortable talking with your doctor or you might not tell him something that could be important or he could miss something important. Especially an oncologist who you will be dealing with closely the next few years.

      over 3 years ago
    • PaulineJ's Avatar

      I'm glad you asked this question.
      I started the Arimidex last Sept. and I'm having the same problems you're describing and more.The primary and 2 oncologists are completely ignoring this.And because I have multiple medical problems I don't know what's causing what.I'm with you and maybe more people here.I'm going to have to take the suggestions as well as you may,because 5 years is a long time.

      over 3 years ago
    • Ladykarla's Avatar

      I am blessed to have a wonderful oncologist. Yesterday, I told him about a side effect I am having from Herceptin. He had not experienced this one with his patients. However, he believed me and IMMEDIATELY treated it. He is wonderful and kind. In my opinion, if you say you have side effects, you should be treated for them. Simple as that. I agree with the opinions listed here. The main thing is do you trust your oncologist? Are you happy with him or her? You might want to bring a personal representative or caregiver to your next visit to help express your concerns. Keep us posted. I'm proud of you for posting this issue for us to learn from.

      over 3 years ago
    • MillieS's Avatar

      Have been on it since Jan.2013 and am having the same problems. I am taking more pain medication than I am comfortable with just to make it through the day. My onco has cut me back to every other day . We will see of that helps . If your Onc won't with you find one that will. Life is too short to be miserable ALL of the time! Hugs

      over 3 years ago
    • carter4's Avatar

      Sometimes they minimize things to keep you on the drug (better you on that drug than you NOT on that drug) - in my opinion.

      over 3 years ago
    • Nonnie917's Avatar

      I'd say, "Doctor you are nuts to think these aren't side affects. You don't get growing old symptoms that fast and that hard." Do some research then take it into him and let him know you are no dummy and you want something done like changing the medication. It is obviously a bad medication for you to be taking with all those side affects and if you stop it the side affects would stop too. I just get the feeling that he doesn't want to do anymore for his patients than he has to. Force the issue and force him to do his job right. Look up the side affects of that drug then make an appointment and tell him you will not be taking it anymore and he has to come up with something else. He is getting paid to do a job so he better do it and do it right. Don't you think?

      over 3 years ago
    • Misty's Avatar

      I was treated by a medical oncologist for over a year during which time he was unable to determine what was wrong with me. He said he was going to "start over again" with the same tests, etc. I immediately changed to a new onc and was told that making a change is quite common and the doctors involved do not take it personally. When I finally had a dx of Invasive Ductal Carcinoma, HER2 +, ER+ & PR+ I was so glad to have my new onc. Remember, the doctors work for YOU and you have every right to change when you are dissatisfied, especially during cancer treatment.

      As for Arimidex, I started it Dec. '12 and by the end of Jan. I stopped it due to increasing symptoms I was already having. My PA-C gave me a different sample to try, but my insurance doesn't cover this expensive drug. I am still not taking anything and am concerned about recurrence, but at age 66 I'm not concerned about living a long time if it means I'll be in pain every day. Each of us must make our own decision about this, depending on our individual circumstances.

      Good luck to you, and hugs for having to go through this.

      over 3 years ago
    • Misty's Avatar

      If anyone wants to get the real side effects of any medicine, including Arimidex, look it up on Ask a Patient. It opened my eyes real quick about what I was facing for the next 5 years on that stuff. I stopped taking it, even though with my dx of HER2+, ER+, Pr+ chances are high that I will have a recurrence. I'm still giving some thought to trying a different brand, but I feel great except for a bit of neuropathy in my feet. For the first time in 3 years I feel "normal." I also worry about gaining more weight if I try another drug. I ballooned 35 lbs. after taking Armidex for 1 1/2 months and I can't seem to lose any of it.

      over 3 years ago
    • mrsstevie's Avatar

      Thanks for the many responses. I have bad neuropathy in feet/legs from chemo and also the same side effects from Arimidex. So they do happen. Just trying to deal with both of them but want to stay on some sort of AI. Will check with oncologist soon.

      over 3 years ago
    • pattenwest's Avatar

      Hi, I have stage IV Breast cancer and have been on Arimidex for 5 months My one said joint and muscle pain is a common side effect. In the beginning I had headaches also, but gone now.

      over 3 years ago
    • loracy's Avatar

      Thanks for all the good comments. I have printed 2 scholarly papers discussing the joint pain side effects of aromatase inhibitors in general. They are trying to find solutions because of the people who stop taking the drug because of quality of life. Guess I'll make an appointment with my primary internist too discuss. It makes me sad because I retired from the institution this oncologist is affiliated with and prefer to support them.

      over 3 years ago

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