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

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Comments

  • StrongEnough
    StrongEnough Member Posts: 18

    Take them with you to your next oncology appointment. Officially, they aren't supposed to take drug from you, but they've taken excess drug (including a Neulasta syringe!) from me and passed them on to patients who struggle with medical costs. It will depend on the practitioner, of course, but I am fairly certain that a pharmacy would not have the connections to do the same.

  • Pheasantduster
    Pheasantduster Member Posts: 1,986
    Unused pills are a problem - our local police dept will accept any medications so they can be destroyed safely - not put down your drain. I peel off the label leaving only the name of the medication. It does bother me that I know someone could use them.
  • ClaudiaMetz
    ClaudiaMetz Member Posts: 136

    I haven't been on the boards in some time. I have been taking Anastrozole for 3 years. My cholesterol was slightly higher than my PCP wanted. When I talked to my oncologist she told me it could do that; however, her assistant said she had never heard of that. Anyone else had this problem?

  • Kthielen
    Kthielen Member Posts: 176

    Thank you all for the kind words and prayers, wish I could give u all big hugs!! I found out today I have a spot on my liver and vertebrae...ugh! Wish I would have had a longer break but I am putting my big girl panties on to get back on the saddle for round 2. I have my port put back in tmrw.

    I see my MO on Wed morning, any suggestions of which drugs too use, obviously switching to something than Armidex...would you recommend Exemesane?

    Anyone know or heard about Kadcyla? I know I will be on Herceptin, the pituitary tumor is Her 2 and ER pos. The question is what else to start on. I originally got TCHP.


    Thank you wonderful warriors!!

    Kathy

  • Molly50
    Molly50 Member Posts: 3,008

    Kathy, I am very sorry. I will continue to pray for you.

  • Smurfette26
    Smurfette26 Member Posts: 269

    Hugs Kathy.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Kathy, I'm so sorry. I can't offer advice but I can offer comfort and support.

    HUGS!

  • lago
    lago Member Posts: 11,653

    Kthielen I switched to Exemestane from Anastrozole. I did much better. No more back aches. Kadcyla is super Herceptin/Herceptin on steriods. Not sure if they will start with that. They may see how you do on Herceptin 1st

  • Mommato3
    Mommato3 Member Posts: 468

    Kthielen, I'm so sorry. I've believe there's a thread on here about Kadcyla. I hope it gets you back to NED.

    Lago, How bad were your back aches? I've had some off and on back discomfort. Not pain but it felt like I lifted something heavier which apparently I can't do anymore. I just hit two years last month and it's so hard to determine if it's something more worrisome or if it's this stupid Anastrozole. I have read that this was a SE.

    For those of you with osteopenia/osteoporosis...Did you have any signs that your bones were becoming weaker? The chemo and forced menopause has been really hard on my body. I'm not as strong as I used to be. I won't get another Dexa until next April. I'm currently on a preventative dose of Fosamax. I took a four month break because I kept having these weird side effects. I'm back on it to see if they come back again.

    Last summer my cardiologist put me on a daily aspirin for my heart. My heart recovered from the Herceptin so he took me off all my heart medication in March. He told me I could start taking the aspirin every other day since it caused me to bruise a little easier. I noticed after a couple weeks that I was definitely achier. At first I couldn't figure out why I all of a sudden felt worse on the Anastrozole. Then it hit me that I wasn't taking the aspirin daily. I went back on it and started feeling better within a week. Even though the aspirin is low dose, it helps with the achy feeling.

  • lago
    lago Member Posts: 11,653

    Mommato3 My back ache started gradually. I do have a high tolerance to pain so to ask "how bad" is tough for me to answer. Remember they took pan pump away after my BMX with nodes on both sides because I wasn't using it. Never even took a tylenol after surgery. But not being able to stand up straight is certainly a decent amount of discomfort. I hear that if your bone is broken it hurts more… well I just broke my 2nd metatarsal 3 weeks ago and not only did I work the rest of the day, I walked home. Next day I went to my podiatrist and have been in a shoe/boot thingy ever since.

    LoopyShockedSad

  • Mommato3
    Mommato3 Member Posts: 468

    Thanks Lago! I have a fairly high tolerance for pain too. That's why I had a hard time trying to decide how bad my hip was last year. Like I said, my back isn't in pain but it's a little achy. It started about six weeks ago right after we spent a week at Disney World walking like crazy. It isn't all the time...sometimes not for several days. One more year and I'll feel much better. Crazy! Can't believe you broke your foot and didn't know. Super Woman!

  • lago
    lago Member Posts: 11,653

    I knew I did something. That's why I called my doctor the next day

  • tjh
    tjh Member Posts: 272

    Kathy....Hugs and prayers to you

  • HappyHammer
    HappyHammer Member Posts: 985

    Lago....wow, can imagine having such a high pain threshold can be a blessing and a curse. Hugs to you!

  • moonflwr912
    moonflwr912 Member Posts: 5,938

    kathy, hugs and prayers and maybe even fingers crossed.

    Lago, really? Broken bones too? Just stop it, gim... LOL yes. I am being mean. Can we blam it on cancer? I like to blame everything on that.

  • lago
    lago Member Posts: 11,653

    Moonflwr912 actually the bone in my foot only show osteopenia. I was working a lot the past few weeks filling in for people. Yes on my feet. Must have been wearing to high a heel on some of those long shifts. No more heels over 2" when I work. I'll be trying to keep them to 1 or 1.5 at the most.

  • nurse88
    nurse88 Member Posts: 8

    I have been on it for 8 months, no problems or SE at this time. Mucious has come back surgery soon.

  • Jerseygirl927
    Jerseygirl927 Member Posts: 260

    yes my cholesterol went up also, but dont worry about that as much, talk to you MO. They may have other patient who cant afford the pills and may know how to recycle them to someone on charity care. It seems some laws need to be broken, there was no such law years ago, i think the pharmo asked for this law to get richer. I hate them controlling governments and politicians because of greed. I have a cousin who has no insurance and i give her my motrin pills when she needs them. Whats more important, big pharma or people suffering? I know in my heart i am not wrong. As for A1 pills, they are needed to save lives, think on thar one.



  • Molly50
    Molly50 Member Posts: 3,008

    Nurse88, I am sorry about your recurrence.

  • ClaudiaMetz
    ClaudiaMetz Member Posts: 136

    Jerseygirl, you are the first reply that I have seen sent I posted about my cholesterol being a little high. I know I have to take the medicine but I don't want to take something for the cholesterol unless I have to. I am going to see my Oncologist soon and I will take to her about it. I have a blood test from my PCP soon and I should have the latest results to take to her.

  • MissV123
    MissV123 Member Posts: 7

    Hello everyone, I haven't been on the Board in quite awhile.....I started Arimidex March 23rd and by May 13th I had had it... I was sick ,achy, moody, couldn't concentrate on anything.......went to a new Oncologist. He took me off the medication for a week......I will call him tomorrow...(one week) and if Im ok , we will start again next week only Mon. Wed. and Fri. for now... he is also adding.....an over the counter medicine for my bones...(or course I am at work and cant remember the name)..... I actually spoke to him about discontinuing the Arimidex and he says nope.....my chance or recurrence it to high......so here we go again......hope all are well.....and congrats to lago.... good girl !!!

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    MissV123, there are other aromatase inhibitors that you might try rather than Arimidex: Aromasin and Femara. Some ladies who have trouble with Arimidex can take the others. Also consider that it may be a filler in your generic anastrozole that could cause the problem. I've had good luck with the one from Teva as have others. Perhaps the name brand would work, too. So there are several options for you to discuss with your MO. Probably you are taking Fosamax for your bones. I am. Generic, of course. Keep looking for solutions!

    HUGS!

  • grandma3X
    grandma3X Member Posts: 297

    Kthielene- I just saw this article on the MONALEESA trial. They are stopping it early because of positive results. It's targeted to ER+/HER2- women with liver mets. I know you are HER2+, but it may be worth mentioning to your MO.Good luck!

    https://www.novartis.com/news/media-releases/monal...


  • grandma3X
    grandma3X Member Posts: 297

    Kthielen - I just saw this article about the MONALEESA trial. They are stopping it early because of positive results. It's targeted to ER+/HER2- women with liver mets. I know you are HER2+ but it may be worth mentioning to your MO. Good luck!

    https://www.novartis.com/news/media-releases/monal...

  • lunderwood
    lunderwood Member Posts: 31

    Grandma3x - have you had any issues or side effects with the Fosamax? My MO prescribed it but I never took the prescription after reading all the potential issues (including Liver issues). I requested Prolia instead but insurance company has denied the request. According to my bone density scan I am classed as having osteopenia. Since it's likely that I will be on Arimidex for an extended period of time I should probably reconsider the Fosamax. I have been very fortunate to not have any issues with the Arimidex.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Lunderwood, I've been on Fosamax for 20 months with no problems. I am very careful to drink 8 oz of water when I take my pill and don't eat or drink anything else for 30 minutes and, of course, stay up, no going back to bed. My dexascan showed some osteopenia before I started. I'll have another one this fall. Keep in mind that bisphosphonates such as Fosamax seem to prevent bone mets - that's a plus for me. You might give it a try. I'd rather take the positive of helping my bones and keeping mets away rather than worry about SEs that might never happen. But that's me. You certainly may feel differently.

    HUGS!

  • Mommato3
    Mommato3 Member Posts: 468

    Lunderwood, I've been taking Fosamax (35mg preventative dose). The only side effect I seemed to notice was heartburn. It started after my third dose. The following week I increased my water intake to about 16 oz and waited 45-60 minutes to eat. I never had a problem with it again.

  • Fearless1956
    Fearless1956 Member Posts: 41

    I recently asked my pharmacist about the availability of Teva but they said they don't/can't purchase from that company (I've been on Accord brand for 3 months with some side effects). She ordered for me from a company called Major Pharmaceuticals and got me a one month supply to try. After a couple of weeks, I do believe I'm starting to notice a difference with less muscle and joint ashiness. I started running again (so to speak Winking) in late March to try and help with bone strengthening and in hopes that it would help with the symptoms but that had no effect either. In fact, the side effects seemed to make the running more difficult. I'm in hopes that this isn't a fluke and that there really are fewer side effects with this new brand.

  • tjh
    tjh Member Posts: 272

    Fearless....I take the brand name Arimidex. I have some joint pain but it is doable with an occassional Aleve. I did need my oncologist to write the prescription for name brand only and she had to send in a letter and verification that we tried generic first. Now it is covered, we do need to pay $20 copay with it, generic is free. But we'll worth it.

  • Smurfette26
    Smurfette26 Member Posts: 269

    MissV123 I had terrible side effects when I started Anastrozole. Insomnia, constipation and the muscle & joint pain was so bad I could hardly walk. My Oncologist had me take a break for a couple of weeks and I restarted on a different brand. I am doing so much better. I'm also taking Magnesium, Tumeric and Calcium & Vitamin D. I hope you soon find an AI that you tolerate well.