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For Arimidex (Anastrozole) users, new, past, and ongoing

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Comments

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Judy, is Silverscript through Premera or someone else?

    HUGS!

  • IHGJAnn49
    IHGJAnn49 Member Posts: 408

    Peggy, I get it separately.. It's a part D medicare plan. you can check it out at silverscript.com

    I haven't had any problems with it.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Thanks, Judy. I will check it out.

    HUGS!

  • 2ndGenBCA
    2ndGenBCA Member Posts: 28

    Hello friends - just wanted to share information posted by Lisey on another forum - it may help those of us who are having/have had severe SE with AI's: 

    Genetic testing for medication tolerance. https://www.kailosgenetics.com/pgxcomplete

    Cutting edge testing. Lisey is a big proponent. I plan on checking it out since I experienced debilitating SE's from AI's - Arimidex and Letrozole - poison to me - name brand and generics. 

  • LauraSmith59
    LauraSmith59 Member Posts: 4

    Hi Celia

    My onco ordered one and waiting for them to call with a date. I decided to start the Arimidex and took the first dose this past Sunday. So far I have no SE's, (other than a slight headache), although they could appear at a later time based on what I have read, or I could not have any at all.

  • Suz-Q
    Suz-Q Member Posts: 110

    Hi 2ndGen,

    I didn't see aromitase inhibitors listed, just tamoxifen which is a SERM.

  • coachvicky
    coachvicky Member Posts: 984

    Thanks for the link 2ndGen!

    All, I got the brand name Arimidex after four months of 2 different generics. The cost was $72.00 for a 90 day supply. So far NO SEs.

    Coach Vicky

  • Lillywhite
    Lillywhite Member Posts: 5

    Wow - that is complete B.S. So crazy - just no explanation for that.

    Think of the MILLIONS of these pills that are consumed per DAY just in the U.S.A. We all need to continue to speak up. Otherwise - why would they ever try to change or improve? Why do some woman have such severe SEs and others almost none? To anyone having side effects that they can not deal well with - TELL YOUR DOCTOR. It is their job to help you through this.

  • Barbmak
    Barbmak Member Posts: 31

    I have been so torn about taking Anastrazole because I already have osteoporosis and my tumor was just 1-2% ER+. I got great advice from a nurse navigator at the cancer center who told me I didn't need to make a decision right away and to make an appt with my PCP. I saw PCP yesterday and after talking everything over with her ( I will be getting Prolia injections twice a year) I felt so much better. She listened- gave me information on how the Prolia works and we came to the conclusion that I will start the Anastrazole and if SE's get too bad I will just stop. I still work full time in a pretty demanding job, so I am still worried, but happy that I finally made a decision. I took script to Walgreens yesterday and after reading a lot of posts on here about different generics, I asked for Teva. He had it. So I am going to start tomorrow morning. I'm concerned about difficulty sleeping if I take it at night because I already have issues.

  • Tappermom383
    Tappermom383 Member Posts: 401

    Each of us is very different, Barb, but I am finding the Teva anastrozole is helping me sleep. I had been waking up every night to pee (which I still do) but couldn't go back to sleep. I was sitting up and reading for at least an hour every night. Now I go right back to sleep. I hope you have the same results!

    MJ

  • 2ndGenBCA
    2ndGenBCA Member Posts: 28

    I've learned this type of testing is called "Pharmacogenetic Testing." 

    I've been doing some additional research and found an interesting article on the gene sequence CYP1A2: 

    https://bmccancer.biomedcentral.com/articles/10.1186/s12885-016-2284-3

    Also, I found a genetic testing company that screens for this genetic pathway - not sure I am describing this correctly, but there are results offered for CYP1A2 - which also pertains to other cancer drugs: 

    http://genelex.com/patients/conditions/cancer/

    Additionally, I found a genetic testing company that examines metabolic pathways for anti-depressants and includes Welbutrin (Bupropion): 

    https://genesight.com/product/

    These companies appear to conduct tests for several genetic metabolic pathways: 

    http://www.iversongenetics.com/DME.patient.final.pdf

    Do a Google search for "pharmacogenetic testing labs" and all kinds of labs will come up.

    I am very encouraged by these medical developments and will keep looking into options. I have a doctor's appointment next week and hope to get her to prescribe one of these tests to help me with answers to the ongoing SE's. I hope this information is helpful to others.

    -----

    Just found this list of biomarkers and drugs that have no clinical guidelines - this may be of interest to you as well - you'll note that both anastrozole and letrozole are on this list: 

    http://rxpgx.com/resources/pharmacist-resources-2/fda-pgx-drug-labels

  • coachvicky
    coachvicky Member Posts: 984

    My insurance approved the brand name Arimidex through 2099. If my math is correct, I will be 145 years old.

    Go figure.

    BTW, I am really not having any side effects. A couple of very mild hot flashes. I think the trigger fingers are getting better.

    Coach Vicky

  • butterfly1234
    butterfly1234 Member Posts: 2,038

    I'm on Armidex since May 9. I do have a swollen thumb knuckle that aches along with one toe ache. It's annoying but manageable. Could be from yoga. I'm not complaining! Hoping it doesn't get any worse.Love to all.

  • trishyla
    trishyla Member Posts: 698

    So, I've been taking the anastrozole for about two months now and the side effects have been killing me, even with Teva brand generic. I've been waking up at night, feeling like my hands are being poked with sharp sticks. And the lower back pain has been pretty debilitating. I feel like I'm 90 years old. Creaky and cranky.

    I told my MO yesterday that I was thinking about stopping them. She said that was okay, but only because she's starting me on a six month course of Xeloda. Talk about jumping from the frying pan into the fire!

    So, back to chemo it is. Urghhhh. Just when you think there's a light at the end of the tunnel...

    Good luck to everyone. I have a feeling I'll be back in about 6 months.

    Trish


  • Mammacita
    Mammacita Member Posts: 2

    I've been taking anastrozole for a month now and within the last two weeks I've become very nauseous.

    Can I take zofran

  • trishyla
    trishyla Member Posts: 698

    Mammacita,

    I think you can take zofran anytime but you should check with your doctor to be sure. Hope you feel better soon.

    Trish

  • peregrinelady
    peregrinelady Member Posts: 416

    Trishyla, can I ask why you are taking Xeloda when you are stage 2? s it being used for recurrence prevention now?

  • Taco1946
    Taco1946 Member Posts: 630

    I think I am seeing an improvement with Teva brand although my body may just be getting used to the AI's in general. The first month I woke up with a headache every morning although it would be gone by breakfast. They have gone away and the joints are better even though it has been humid (although humid in Phoenix isn't like humid in other places I have lived!). My MO is willing to work with me to find the one that has the fewest side effects for me. Fewer hot flashes than before surgery (having them at age 70 should have told me something was going haywire). Planning a discussion about the bone weakening with her the next time I see her. I had been refusing bone density studies because I wasn't happy with what I read about the side effects of those medications. See my primary in 3 weeks so plan to discuss with him too. Happy weekend.

  • thecargirl
    thecargirl Member Posts: 66

    I have been on Arimidex for 6 months and started to have a lot of joint pains. I heard about drinking one glass of tart cherry juice and taking the Arimidex at lunch time. I cannot believe it but my joint pains have gone after about 2 to three weeks. I also had started Fosteum Plus for my osteopenia and potential bone loss from the Arimidex. I feel great!

  • Doughboy
    Doughboy Member Posts: 27

    so, you have tried the cherry juice and it worked, thecargirl? I might have to try that. The joint aches and trigger fingers are horrible. I have been off of arimidex for going on four weeks. Have to contact my dr this week to see what the next step will be. A coworker told me about a prescription cream called Diclfenac Sodium. It is to be for joint pain. I'm going to ask my dr about this. Has anyone else tried this

  • thecargirl
    thecargirl Member Posts: 66

    Yes, it is very strange, my joints really were painful, especially my wrists. The tart cherry juice and the Arimidex at noon, seemed to have helped. I also added in the Fosteum Plus at that time. I don't know what did it, but something did.

  • trishyla
    trishyla Member Posts: 698

    Peregrinelady,

    The CREATE-X trial, out of Japan and South Korea, showed a pretty dramatic increase in five year disease-free survival for triple negative bc patients, from 55%to 69%. My triple negative side was pretty damned aggressive, and I didn't have a pathologically complete response to my neo-adjuvant chemo. With both of those together, I am at a much higher risk of reoccurrence. As much as I don't want to do more chemo, I really want to do whatever I can to lower my risk.

    Trish


  • Tappermom383
    Tappermom383 Member Posts: 401

    This has probably been addressed here but does anastrozole cause dry eye? It's something I already had but my eyes have really been bothering me the last couple of days.

    MJ


  • peregrinelady
    peregrinelady Member Posts: 416

    Thanks, Trish. Sounds promising and since TN doesn't require antihormonals, it is one more bit of insurance against recurrence. Best of luck to you!

  • trishyla
    trishyla Member Posts: 698

    Thanks, Perigrinelady. I might not have known to ask my MO about it if not for this site.

    Trish

  • Doughboy
    Doughboy Member Posts: 27

    Tappermon38, I too have dry eye. I keep artificial tears a couple places in the house for relief where ever I am. It drives me crazy.

    Thecargirl, what is Fosteum Plus

  • hippiegirl
    hippiegirl Member Posts: 12

    Hi my sisters on this journey - I want to thank you for your hands and hearts in friendship. I've been writing to some of you privately and have found so much comfort and support. Very grateful for this forum, too. Hug

    After a negative experience with my first onc, when I told him my fear of taking an AI due to the possible SEs, instead of sitting me down and treating me with understanding, sensitivity, respect, and class, he proceeded to throw a fit and said, 'Who's the doctor here, you or me?! and then in a God-like manner, said I'd get a recurrence if I didn't take it, and don't I trust him, blah-blah-blah. My husband and I looked at each other, stood up, and walked the hell out. Shocked

    We're now waiting to see a second onc on 8/17 and hopefully THIS guy will be everything that the other one wasn't. Smile

    Two days ago I saw a RO for a consult and was told that I needed 33 rads (still waiting for authorization for them to go through). OK. This doctor had a very nice demeanor and explained everything to us step by step with clarity. Smile

    Due to you and your sharing of your experiences with me, although my fear of taking an AI is still here, it has greatly been reduced, and again I thank you. I have a feeling the second onc will probably want to give me Arimidex, and if so, I'll ask for the TEVA brand (hope that my insurance will cover it - I have SCAN health plan, medi-cal and Medicare.

    So this is my story and I will be here both on the forums and also privately. I feel very connected to you and feel strongly that we need one other.

    God bless all of us as we walk our journey together.

    HeartHippie Girl

  • nayda985
    nayda985 Member Posts: 270

    I have had dry eye with this med also...The artificial tears has helped me a lot.😊

  • butterfly1234
    butterfly1234 Member Posts: 2,038

    Hi Hippy Girl - happy to see you on this thread.

    Taco Girl, I live in AZ as well as Michigan so I know what you mean about the humidity which is not really humidity.

    Thanks for the tips cargirl. I'm going to try the cherry juice.

    TappersMom - try Retaine eye drops. They're natural and recommended by my optometrist for dry eye.

    I'm getting some joint issues in my fingers and toes. Most times, it's only one toe and a couple of fingers. It comes and goes so I'm not complaining.I bought some mineral salts so I can take a nightly soak, will try Claritin as well, and rub in some Bengay.  It's all manageable though I my DH said I'm moody. I mentioned that may be one SE of the armidex and I should have kept my mouth shut lol! Who knows? It could be the discomfort that's causing the irritability. I did try a China Gel sample at yoga today and I think it may have worked. I haven't had any discomfort all day. I'm going to look into this and will post more information. We'll get through this together with continued love and support.

  • Graciesgroove6877
    Graciesgroove6877 Member Posts: 1

    I don't see any posts about hair loss while taking anastrozole,. my hair has gotten so thin on top it barley covers my head. I am about ready to bag the drug altogether