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Doing Well on Aromatase Inhibitors (AIs)

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  • celiac
    celiac Member Posts: 1,260
    edited June 2021
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    Well, husband picked up my generic anastrozole refill at Walgreens today. It is in my records to only dispense TEVA, but they switched it to Zydus, which is manufactured in India. I am extremely reluctant to take these pills due to all the rampant COVID in India and also since this manufacturer has had FDA warning letters in re: deficient manufacturing processes (and even some recalls of other meds). Does anyone have additional knowledge of this manufacturer they can share? I will be talking to the pharmacy tomorrow about this switch (scrip package is unopened/stapled shut) and attempting to return it. If they won't take it back, I will likely suspend taking the pills and try to find an alternative. This scrip is only 25 pills & I will need to get a refill from the MO. Anyone know the current price of brand name through Eagle Pharmacy?

  • keywestfan
    keywestfan Member Posts: 361
    edited June 2021
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    Celia C- The cost at Eagle is $180 for a three month supply of 90 tablets. I have them automatically delivered every three months.

  • Emily21
    Emily21 Member Posts: 67
    edited November 2021
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    Thanks Kaylie, it is very tough mentally at the minute but I take great inspiration from knowing that life does return to some semblance of normality. I plan to retire from my job as a medical scientist in September. Best wishes Candace..... Anne.

  • castigame
    castigame Member Posts: 336
    edited July 2021
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    very silly comment. To my chagrin, I almost ran out of Arimidex. I was a nervous wreck and embarrassed that I almost let it happen. This was over the July 4th wind. Paid extra $12 to have it 2 day air. Crisis aborted. And just as a back up I had generic filled. Full charge for another 3 plus yrs. (7yr minimum and almost 4 yr mark)

  • trudy-erl
    trudy-erl Member Posts: 11
    edited July 2021
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    Hello:

    My Doctor told me never to take a generic for "very important" medical situations. What is more important than cancer? I take Femora but not the generic. Apparently generic tend to have more fillers and less of the needed drug. Financially it does cause difficulty as I pay $123.00/month and the generic would have been $38.00, but I gladly pay the high amount because technically I should not even be here anymore to complain. I feel very blessed to be here, eventhough the Femora side effect has zapped 90% of my energy.

    You all have a wonderful day! :)

  • muska
    muska Member Posts: 224
    edited July 2021
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    @ Trudy-erl

    Generic drugs are chemically identical to brand name ones. Please read here: https://www.fda.gov/drugs/generic-drugs/what-approval-process-generic-drugs

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited July 2021
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    muska - identical? I doubt it. For example, I had fewer SEs on brand name Arimidex than generic anastrozole. A freind taking a brand name drug (not cancer) has had the same experience. Better control of the condition as well as far fewer SEs. Her DR also told her that generics are allowed to have a +/- range of the dose listed, and brand names do not have that range. Supposedly the "active" ingredient is the same, but sometimes I wonder. "Bottle of Lies" by Katherine Eban describes the corruption and boom in the generic market. Probably the original drug manufacturer is no better................

  • polkadot1
    polkadot1 Member Posts: 46
    edited July 2021
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    My MO said the very same thing...that many people do better in regards to side effects on brand name Arimidex. I am one of those people. I was ready to give it up altogether when she suggested that I try the brand name first. I am very glad she did as I have tolerated it much better.

  • [Deleted User]
    [Deleted User] Posts: 0
    edited July 2021
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    Thank you for the info. I have been meaning to down load that book. It's on my library list. I don't believe they are the same only because I don't trust ANY drug company to be honest. They are all in it for the money.

  • denise-g
    denise-g Member Posts: 353
    edited July 2021
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    I have been on anastrozole for 9 years. My sister has been on it for 5 years. The first couple of years we had a lot of joint pain especially in the winter months. There were definitely times I wanted to quit but I knew I just wanted to tough it out.

    The last five or six years I rarely get any side effects and my sister does not either. Our bodies got used to it I guess.

    Our oncologist says we will be taking it for as long as we can. I just had my 10-year check up this week from a really difficult diagnosis and I am doing great.




  • [Deleted User]
    [Deleted User] Posts: 0
    edited July 2021
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    Denise-G Great news!!!

  • juju-mar
    juju-mar Member Posts: 200
    edited July 2021
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    congratulations Denise-G! So nice to hear good news 😀 I've been taking anastrazole since March and wanted to change meds around the 3 month mark, but MO said to give it at least 6 months. Glad to know the side effects can get better with time.

    Julie

  • castigame
    castigame Member Posts: 336
    edited July 2021
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    Dennis G,

    That is fantastic!!

  • cangold
    cangold Member Posts: 35
    edited March 2022
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    I just saw on the Arimidex website, they have a program for 90day supply delivered to your home for just $180. It reads $2 a day

    Here"s the link https://www.arimidex.com/about-arimidex-patient-di...

    I'm going to talk to my MO about this because Anastrozole is giving me way too many SE's


  • micheleh57
    micheleh57 Member Posts: 19
    edited August 2021
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    Hi Julie! Same here with the joint stiffness and on anastrazole.

    It's "only" in my hands, and upon awakening.

    I don't feel 80 (I'm 64), but it sure is weird. Also asking the oncologist about the stiffness and any remedies. I'm just 6 months into taking

    the Rx so do want to give it more time. But I sure know what you mean!

    Very, very infrequent "warm waves" that have gone down to almost nothing. Yay!

  • juju-mar
    juju-mar Member Posts: 200
    edited August 2021
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    MicheleH57,

    I have noticed the joint stiffness doesn't seem quite as bad as it did for the first few months. I'm 4 months into taking it and find that I need to stretch and just keep moving. Mornings are just slightly less stiff. I now feel 70, not 80😀 (I'm 55). I may participate in a 4 month study for joint pain and CBD through our local University cancer center - I will ask my MO on Tuesday if she thinks it'll be ok. I also need to ask if I will take the anastrazole for 5 or 10 years. Hope you are doing well. I just completed radiation last Friday. So now onto follow up care. Fingers and toes crossed the cancer does not return!

    Jukie

  • [Deleted User]
    [Deleted User] Posts: 0
    edited August 2021
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    Juju-mar, I use the topical CBD (brand name Medterra)-----there are other brands of course..... on my hands and hips when need be. Kind of expensive but you only need to use a little bit. Dr's know that I use it and no one has said not to. I have quite a few clients that use it too with good relief.

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited August 2021
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    JujuMar - if you participate, let us know what you use/how well it worked.

    KID - I will look for the product you mentioned. I've tried a couple, but no releif. If it has any THC, I will need to go out of state. Even if it is only CBD, if nobody local carries it, current state laws may prohibit internet sale. WYLD THC/CBN (Cannibinol, created as THC ages) Elderberry gummies, and Gron(with an umlaut) THC/CBD/CBN strawberry-melon gummies help with sleep.

  • mimie
    mimie Member Posts: 9
    edited August 2021
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    I have been on anastrozole for 3.5 years. I have moderate joint pain in my right SI joint. Daily exercise is critical to reduce the discomfort. I used to take naproxen as well, but worried it has made me anemic so have stopped taking it. I also am on Prolia. My oncologist said yesterday I will have the Breast Cancer Index done next year to see if I will benefit for more than 5 years of AItreatment. I had planned to be on it forever, as the discomfort is manageable. Will wait and see what the testing reveals

  • Suz-Q
    Suz-Q Member Posts: 110
    edited August 2021
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    I completed 5 years at the end of December. I had to change from anastrozal to Exemestane due to joint pain after a year. Had no pain with Exemestane. If one type is causing pain try another. Best wishes! I did notice my bad cholesterol increased when I was on these

  • ubershop7
    ubershop7 Member Posts: 32
    edited September 2021
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    I just completed my 5 years of AI's in August. Congrats to everyone who completed 5 years! I took Aromasin, which I got for free through Pfizer rx program, then exemestane later on. My SE were joint pain. I would lierally tuck and roll to get out of bed because it hurt to sit up and get out of bed normally. Then I would waddle to the kitchen to make coffee and could barely tighten my hand around the coffee pot handle. If I sat for long periods if time, it would hurt to stand up. Oddly enough, once I got moving, the joint pain would subside. Usually within 5 or 10 minutes. That went on for about two years. Beyond that, I noticed alot of hair falling out in the shower the first year. No hot flashes at all, and I sleep like a rock. I did gain about 25 lbs though. Anyone start to lose weight after AI tx over? My doctor said my metabolism should go back to how it was before. Not sure if she was just saying that to make me feel better....I was sobbing because she weighed me.

  • micheleh57
    micheleh57 Member Posts: 19
    edited November 2021
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    About that hand pain: I've tried a number of remedies - Aspercreme and Voltaren and Advil and Tylenol and CBD balm - and NOTHING has worked to ease it.

    But I have just started wearing compression gloves *to bed* and that has been a bit helpful. A bit. Better than the creams and OTC's.

    At least I now have the sensation of my painful hands being cradled and cared for overnight. It's like wearing an Ace bandage on a sore ankle or the swaddling that comforts a baby.

    In the morning I still have stiffness, especially in my left hand (lumpectomy was on the left breast), and it's eased by running hands under warm/warmer water for a minute or so. Using my hands and fingers loosens them up and I'm better through the day.

    But I have to say, I cannot really imagine dealing with this for another 6.5 years. YUCK.

  • cindyny
    cindyny Member Posts: 1,166
    edited November 2021
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    I shower at night so in the morning I use a hot washcloth to wash my face. That super hot water ringing out of the wascloth feels the best on my hands.

  • butterfly1234
    butterfly1234 Member Posts: 2,038
    edited November 2021
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    I haven’t tried this yet but my massage therapist recommended melting hot paraffin wax and soaking my hands for arthritic hand pain,

  • cindyny
    cindyny Member Posts: 1,166
    edited November 2021
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    I think they sell a machine that heats paraffin wax and you put your hands into it, then wear plastic gloves. Until you peel it back off.

  • [Deleted User]
    [Deleted User] Posts: 0
    edited November 2021
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    This might sound weird but has anyone noticed that their underarm sweat does not smell? I actually think I noticed this before my dx but can't swear to it. Not that I'm running around sweating but noticed it during the summer. Other than that I have the usual SE, joint pain, feeling exhausted at times. I take Letrozole. Jan 2022 will be 2 years

  • lillyishere
    lillyishere Member Posts: 770
    edited November 2021
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    Kid919, now that you mention, I do feel dry since on letrozole and my sweat doesn't smell. I always used baking soda for my underarms and I still do but there isn't much sweat, tears, etc.

  • Emily21
    Emily21 Member Posts: 67
    edited November 2021
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    Apologies castigame, I'm afraid I posted the reply on the wrong thread. 💐

  • threetree
    threetree Member Posts: 1,322
    edited November 2021
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    Re sweat and underarm stuff - I find what those of you who've said you're underarms don't smell very interesting, as I have found the opposite. Ever since I started letrozole, I sweat more and my underarms in particular smell extra bad, and a whole lot like Letrozole! Like the bottle full of pills smells when I open it. Even with regular showers, I have to sponge a lot too, just to get rid of the underarm Letrozole stink.

  • [Deleted User]
    [Deleted User] Posts: 0
    edited November 2021
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    Lilyishere and ThreeTree : Interesting how we are reacting to this med. I have noticed my tear ducts itch. ThreeTree: I bet the med is secreted thru our skin.