Has ANYONE had a manageable experience with Anastrozole?

LifeInBloom100
LifeInBloom100 Member Posts: 56 Member
edited June 27 in Breast Cancer #1

Hi, all:

I've been silently but consistently rooting all of you on toward restored health.

I've been through (as most of you have personally experienced, on your own timelines and journeys) the most intense path toward survival since my diagnosis at the end of Sept. 2023 with invasive ductal cancer + one positive lymph node. ER/PR+ and HER2-.

I've had a double mastectomy and Phase-1 reconstruction, 5 weeks of radiation, 4 months so far of Lupron shots, and will start Anastrozole next week - 6 weeks ahead of my upcoming reconstruction surgery. I was alerted I already have severe osteopenia in both hips, and I have noticed I already suffer some joint pain and kidney-area mild pain (I'll guess from the Lupron, but who knows?).
I NEED my eyesight for my work (it's starting to get blurry when I look at texts on my phone - I have to hold the phone at arms' length now or wear readers). I am just 50 - an avid runner for 35 years.

I am an absolute nervous wreck about this drug. I have yet to read about ANYONE who hasn't had concerning additional health issues that are known side effects from this drug. I wish to GOD the medical/scientific community would work together with holistic researchers for the sake of ALL of us - their loved ones included - as there HAS to be a better way to prevent disease and heal the body of it without destroying it. I know pharmaceutical companies make a killing from all of this, but I am also not of the mindset medicine is purely money-making. There have to be people who care in service of others. I also see, however, that many people are frightened by the risk of not taking these drugs, because the only evidence mainstream sees is the correlative relationship between these pharmaceuticals and risk reduction. If we knew there were other, natural ways to inhibit aromatase — and experts in this research were widely enabled to SHARE them - couldn't it be possible more of us could survive more healthfully?

I suppose I've digressed: May I ask if ANY OF YOU have found Anastrozole tolerable, without major health implications?

Thank you.

Comments

  • Calmspirit
    Calmspirit Member Posts: 33 Member
    #2

    I have not taken the anastrozole. I filled the script but decided for me it wasn't worth it. I do know many people who have taken it with minor or no side effects.

    My 1st 2 med oncs thought it was something to be tried and if it was terrible could be stopped.

    My council said No, that I should pass on it. When the new predict calculator came out a month or so ago that took into consideration the radiation etc it predicted I would gain no benefit from taking it so I ameven more comfortable with that choice.

    I'm sure you will be fine with the anastrozole.

    ER/PR+, HER-, 1 lymph node with micrometasis, lumpectomy followed by month of rads.

    Guess I will always hope fir a better treatment and that it doesn't come back.

  • JenLee62
    JenLee62 Member Posts: 3 Member
    #3

    Hello! I’m 62 and had papillary carcinoma breast cancer in my left breast. Caught it fairly early and it was slow growing. I had the lumpectomy January 2024 in my nipple area. Did 15 sessions of radiation then was advised to take anastrozole daily for 5 years.
    I started the hormone about 2 months ago. It’s going fine, I’ve noticed more facial hair (dang it!) and some insomnia. That could also be because I need hip surgery and I take pain meds for that.


    I figure I want to do all I can do so I won’t get cancer again. I respect your decision about not taking it. Everyone has to do what’s right for themselves. I wish you strength, love, health, and a happy life!❤️💕❤️❤️🌷🌸🌸🌿🐚🌺🌹🌼

  • pinkwarrior4
    pinkwarrior4 Member Posts: 2 Member
    #4

    Hello, I'm 68 years old and I had my 4th breast cancer surgery this year. I just finished 25 radiation treatments in May, 2024. I was on Tamoxifen for 15 months but then the cancer metastasized to my lymph nodes. My medical oncologist took me off Tamoxifen & put me on Anastrozole in February. I did have some minor side effects like nausea, headaches, fatigue, High cholesterol,. So far I've been able to tolerate the drug. I have a CT Chest scheduled in a week & then I see my medical oncologist for the results. I'm hoping this drug is working; I've been dealing with cancer for the last 11 years.

  • RachelsGarden
    RachelsGarden Member Posts: 5 Member
    #5

    Hello. I did not have a good experience with that med. But, I did decide to not take it after 6 months of dangerous behaviors and thoughts. My onco was disappointed, but understood. I am currently 4 years out, aged 72, and my idc was caught very early. with no lymph node involvement. I could not live anything like a productive person while taking it, so I chose a better, fuller life over a homebound person with mental issues. I know lots of people who have/are taking it with no or very small side effects. In fact, my onco had never had anyone with my side effects so they sent me to a neurologist thinking my cancer had spread to my brain. But luckily my doctor found a study where my side effects were documented. Good luck with your decision.

  • LovesPrimes
    LovesPrimes Member Posts: 109 Member
    edited June 27 #6

    Hi, @LifeInBloom100 ! I haven't responded to this yet because I know you've already heard from me (on another thread). Just wanted to update you that I had a break from anastrozole and got switched to letrozole. I'm only two weeks in on letrozole but, so far, not really noticing anything major. I had thought the anastrozole might be causing my severe fatigue but my fatigue was no different at the end of my break from AI's. I think that can sometimes be an issue hearing from other patients about their AI experiences: they may attribute all negative symptoms to the AIs unfairly. As a cancer patient, it can be really hard to extricate what causes what.

    I wish you the best in making the best decision for you!

  • JenLee62
    JenLee62 Member Posts: 3 Member
    #7

    An update to my comment about Anastrozole. I literally cannot sleep at night until 5 am then my dog wakes me up at 8:30 am. I’m drowsy during the day but fight off naps thinking I won’t sleep AT ALL at night. I’ve also had terrifying nightmares when I finally did fall asleep. Not sure what I’m going to do.

    Sad to say, but during radiation, I was fatigued and could sleep. Now I can’t.

  • LifeInBloom100
    LifeInBloom100 Member Posts: 56 Member
    #8
    https://csn.cancer.org/discussion/comment/1716042#Comment_1716042

    Wow — we have had the EXACT SAME diagnosis - I mean EXACT (ER/PR+, HER-, 1 lymph node with micrometasis) however our only difference in treatment is that I had a double mastectomy with phase-1 reconstruction (phase 2 is in August), whereas you had the lumpectomy. I had an oncotype score of 20. Had radiation, like you. However, I was told that my chances of a metastatic recurrence with tamoxifen alone over 9 years was 16%, but with Lupron and Anastrozole, 10%. That souds like a pretty significant reduced risk. Plus there's exercise (I'm very active) to reduce the risk further. Now if I could only get my mindset calm!

    BUT - I'm sad to say I was hopeful I wouldn't notice a thing, BUT ———- I started Anastrozole last week, the same day as my monthly Lupron injection. I took three daily consecutive doses in 3 days and by the 3RD DAY, BOTH OF MY KNEES were in excruciating pain. I have NEVER had a problem with my knees before — let alone would ever have thought Anastrozole could cause that so fast (if it had — we don't know — I stopped it for a week, per my oncologist to rule out that it wasn't an injury of some type). I have water retention around my kneecap now. That hasn't subsided but the pain has since stopping Anastrozole after three days. But I do not want to risk a metastatic recurrence, so I will try again in a few days. I hear it's also possible that Anastrzole reduces your pain threshhold, so if something happens (injury), you feel it more intensely.

    The one benefit is a good reason to stick with it, but otherwise, man, these drugs hurt us.

    I'm so glad to hear you're doing well, by the way. I wish you continued good health and peace of mind. Thanks kindly, AND TO ALL OF YOU, for sharing your experiences.

  • RocDocVic
    RocDocVic Member Posts: 135 Member
    edited June 28 #9

    I don't know how you ladies survive the AI treatments. It all sounds so painful and bonkers. I don't know if it's a blessing since I'm hormone negative and HER2 3+. This is an extremely aggressive type of cancer that tends to recurr within 3-5 years. If it metastasizes it goes to the brain. This is what scares me the most. I'm in a battle with my Oncologist about getting the circulating DNA test done. I want hard data if anything is left in my body after all treatments. She's skeptical and will not order the test. I've had 6 cycles of docetaxel chemotherapy and targeted chemo drugs Herceptin and Perjeta. A lumpectomy and 16 whole breast radiation treatments. Lymph nodes were negative, and pCR of tumor and surrounding tissue. I continue with Herceptin and Perjeta targeted drugs through November. I'm trying to significantly reduce my risk of recurrence. So far there's been no discussion of my risk of recurrence which I find very odd indeed. Only brief mention by my Radiologist Oncologist but it only covers radiation treatment for local recurrence. Not the whole treatment process and potential for metastasis. Anyone else have this issue? Especially for HER2 positive cancer.

  • ladyrox1
    ladyrox1 Member Posts: 7 Member
    #10

    @LifeInBloom100,

    Hello,

    I’m taking Anastrozole since January 2024, I already had osteopenia in hip before taking it.
    I had a new bone density test done, which should be repeated every 1-2 yrs while on AIs.
    The test now shows a beginning of osteoporosis in left femur hip.

    I’m exercising: walks, dance, cardio classes, yoga, meditate, & weights twice or 3 times a week ,were highly recommended.

    I’m also eating lots more fruit/veggies. No processed sugar, no desserts. As the nutritionist I met with after surgery recommended all this. I’m doing fine following all this, as I don’t want a recurrence. My oncotype score is low, which is good.

    Aches/Pains usually are minimized with my daily activity, stretching is key, before, during & after any exercise. The other day, I was ballroom dancing, I wondered why nothing hurt during those two hours, when I got home my feet were very achy. I must learn how to pace myself when there’s dancing involved. Lol.

    I keep in mind, AI lowers hormones quickly, therefore, I have to get my bone density yearly now, 6 month bloodwork & stay as fit as I can.

    I went for my follow up. Bloodwork is great, due to bone density score -2.6 t score which is beginning osteoporosis in left hip, I will start taking a bone building medication. There’s now a pill one can take once a month, or twice, but there’s also daily, weekly and of course, the every 6 month injection one.

    I fought not to start this but it’s like added protection along exercise & diet. So I’ll try hoping it doesn’t cause side effects.

    I wish you well on this journey!


    My Regards,

  • LifeInBloom100
    LifeInBloom100 Member Posts: 56 Member
    #11
    https://csn.cancer.org/discussion/comment/1716382#Comment_1716382

    Thank you kindly for your thorough reply and shared experience. I'm so glad you're doing all you can.

    I am the only one involved in my breast cancer survivorship journey (no companion, all my friends abandoned me when I was diagnosed - a couple kind acquaintances filled my heart with surprising periodic check-ins, for which I'm grateful . But 90% of this was a 10-month hell, solo.)

    I am two weeks away from final phase reconstruction, which will involve a few extra things to aid it, along with implant replacement.

    I am trying my hardest to come to terms with how incredible fast Anastrozole - in combination with Lupron - is biologically aging me. I've been on it 1 month, and Lupron 6 months, and already, I now have ZERO elasticity under my eyes (pinch the skin and it stays pinched for several seconds before relaxing - with prompting, no less. I don'ty mean to sound vain. I of course am grateful this damn pill is potentially reducing the risk of a metastatic recurrence.

    But as someone who has looked realistically a good 10 years younger than my age, it's very hard to see me pass my chronological one and add 5 to 10 ALREADY. REALLY hard. I also was in a profession I don't feel comfortable continuing.

    In life, I'll put blinders on to outward judgement about looks, and do my best to choose new people who are kind as themselves, grounded and less judgmental, and try to accept living with curtain-layered raccoon eyes, which I cannot believe is my new look, no matter the makeup application.

    And COLLAGEN supplements? Who on earth knows whether it - or what kind - bovine, marine 0- can be safe while warding off a recurrence, to help one's skin.

    PLEASE forgive me for focusing on this. I could talk also about musculoskeletal effects I am experiencing, the weird, odd body temp changes and the precursor dizzy-flashes, but today I'm talking about not feeling it's worth it to even put a clip in my hair, because nothing helps me from looking like I haven't slept in 15 years and am about to have a house dropped on me in Kansas.

    Love to you all.

  • LifeInBloom100
    LifeInBloom100 Member Posts: 56 Member
    #12
    https://csn.cancer.org/discussion/comment/1716382#Comment_1716382

    PS: I also have osteopenia in both hips, prior to starting anastrozole. 'Not sure if I mentioned.

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