Anastrozole

Options
mcp21
mcp21 Member Posts: 3
edited April 10 in Breast Cancer #1
Is there anyone that has decided not to continue with Anastrozole or any drug like it? I am seriously thinking of doing so after reading all the women with side effects. I went off while on vacation this past week (approval from doctor). I still have swelling in my right foot and ankle. It was much more swelling (huge) while doing more walking on vacation. As soon as I get up, swelling comes right back. Heart racing, tiredness, and bad moods are much better since being off of medication.
«1

Comments

  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
    Options
    I hesitate to answer since
    I hesitate to answer since most women (and rightly so) are on these meds. I feel my honesty shouldn't get me in trouble though.
    I have chosen not to take these meds because of side effects.
    God bless you with your decision. It is very personal.
    Hugs,
    Wanda
  • missrenee
    missrenee Member Posts: 2,136 Member
    Options

    I hesitate to answer since
    I hesitate to answer since most women (and rightly so) are on these meds. I feel my honesty shouldn't get me in trouble though.
    I have chosen not to take these meds because of side effects.
    God bless you with your decision. It is very personal.
    Hugs,
    Wanda

    I am so sorry you are having these issues
    I have been on Arimidex (the generic, actually) since July '10. Up to now, I do have joint pain mostly in my feet and legs. I usually notice it after I've been sitting or sleeping for a while. After I get up and move around, it gets better.

    I also have trouble sleeping--but I don't know if it's because of this drug or not. Another thing I'm experiencing is weight gain--but, once again--is it the drug or just my new metabolism?

    Since I am only a little over a year into this, I'm willing to keep on this drug, but I am ever watchful of any new side effects. Right now, I want it's protection and will stay on it.

    As we've all said, everyone is different. I'm glad you've reported your experiences. We all need to be as informed as possible and sometimes this forum tells me much more than the doctors!

    Hang in there,
    Hugs, Renee
  • mamolady
    mamolady Member Posts: 796 Member
    Options
    staying on it
    I agree, the side effects are worrisome, however, I think I will stay on this for as long as I can tolerate it. My bone density is that of some one in their 30's! (according to the test) I am hoping I can get the swelling under control.
    I am more willing to put up with these than a return of the beast! It is a very personal decision and I may change my mind in the future.

    No decision is right or wrong. I am sure that what each of us does is what is best for us. No one makes these decisions lightly or with out a lot of soul searching and prayer.

    Cindy
  • mcp21
    mcp21 Member Posts: 3
    Options
    mamolady said:

    staying on it
    I agree, the side effects are worrisome, however, I think I will stay on this for as long as I can tolerate it. My bone density is that of some one in their 30's! (according to the test) I am hoping I can get the swelling under control.
    I am more willing to put up with these than a return of the beast! It is a very personal decision and I may change my mind in the future.

    No decision is right or wrong. I am sure that what each of us does is what is best for us. No one makes these decisions lightly or with out a lot of soul searching and prayer.

    Cindy

    Anastrozole
    Thanks to all of you. All comments help. I must admit, I am just as afraid of the side effects as the cancer returning. The swelling really scares me, making me think it is affecting my heart. Cindy, are you swelling too? Didn't know it can cause weight gain. Thats explained now. Thanks Again!
  • lynn1950
    lynn1950 Member Posts: 2,570
    Options
    I have felt like quitting,
    I have felt like quitting, too. My joint pain makes me feel so old. I also take anti-depressants for the mood stuff. But I am afraid of the consequences of NOT taking Arimidex, and when I think about THAT, I stay on. It will be three years in October! So now I'm more than halfway through.

    My chance of survival without Arimidex is only around 50%. Arimidex boosts the likelihood of five year survival to 86%. Knowing that number helps me keep things in perspective. I've heard that changing medication may help with SEs. Have you considered trying something different?

    Strength and peace! xoxoxoxo Lynn
  • starseed
    starseed Member Posts: 62
    Options
    Thankfully
    I've not experienced the side effects---at least not yet and it's been just over a year.
    Sometimes my fingers hurt and not badly, but I attribute that to perhaps early arthritis.
    I've been unemployed since December and I know that attributes to the few pounds I put on ;(
    not to mention I feel like my whole life has been one big diet.While I don't like taking pharmaceuticals,there's nothing out there done on a head to head basis that can take it's place. I know that I've been eating bushels of green beans,shitake mushrooms and walnuts because of their high anti-cancer fighters.Muscadine grapes too, if you can find them--although I can get them more readily fermented.
  • mckevnic
    mckevnic Member Posts: 71
    Options
    Arimidex
    Oh yes, I have considered stopping it!! I started taking this in Dec 2010 and had serious stiffness to the point I could not get up from the couch. Doc said it would get better and sure enough, it has. I'm still a little stiff and my first few steps are rocky but then I can move freely. I also have swelling at times especially when I've been standing for a while and I've gained a few pounds too. But I will stick with it because I think it's keeping the cancer away. I hope this helped but really....you need to do what YOU think is right for YOU. Good luck with whatever you decide.
    Chris
  • mamolady
    mamolady Member Posts: 796 Member
    Options
    mcp21 said:

    Anastrozole
    Thanks to all of you. All comments help. I must admit, I am just as afraid of the side effects as the cancer returning. The swelling really scares me, making me think it is affecting my heart. Cindy, are you swelling too? Didn't know it can cause weight gain. Thats explained now. Thanks Again!

    The swelling is different
    The swelling is different than the weight gain. I am planning on hiking more to help with both I hope. I am just waiting for school to start as my 7 year old grand daughter slows me down at the trails. (having to carry her on the up hill parts!) I don't see my oncologist till sept 20th then we can go over everything. I am hoping my system levels out once it gets used to it. We shall see.
  • mcp21
    mcp21 Member Posts: 3
    Options
    mckevnic said:

    Arimidex
    Oh yes, I have considered stopping it!! I started taking this in Dec 2010 and had serious stiffness to the point I could not get up from the couch. Doc said it would get better and sure enough, it has. I'm still a little stiff and my first few steps are rocky but then I can move freely. I also have swelling at times especially when I've been standing for a while and I've gained a few pounds too. But I will stick with it because I think it's keeping the cancer away. I hope this helped but really....you need to do what YOU think is right for YOU. Good luck with whatever you decide.
    Chris

    Arimidex
    Thanks to all of you so much. It is good (but bad) to know others have the same side effects. I will stick to it. Will find out more when I visit my oncologist next month about maybe switching to another type. Best of luck to everyone...
  • Different Ballgame
    Different Ballgame Member Posts: 868
    Options
    I was on it
    I was on Arimidex (7 months), Anastrozole (3 months), and Femara (28 days).

    My side effects to Anastrozole were: (1) pain in right heel and lower portion of ankle was "sore" where I needed physical therapy again. (2) both knee caps had pain (3) woke up numerous times during the night because of the pain in knees (4) i waddled when I walked...did not have normal gait. I was beginning to think that I was a penguin. (5) started skin rash on torso again but immediately applied topical cream and rash disappeared

    Lots of Hugs,
    Janelle
  • lynn1950
    lynn1950 Member Posts: 2,570
    Options
    mcp21 said:

    Arimidex
    Thanks to all of you so much. It is good (but bad) to know others have the same side effects. I will stick to it. Will find out more when I visit my oncologist next month about maybe switching to another type. Best of luck to everyone...

    Good for you, mcp! You can
    Good for you, mcp! You can do it! xoxoxo Lynn
  • cahjah75
    cahjah75 Member Posts: 2,631
    Options
    mcp
    I have been on Anastrozole (generic Arimidex) since Jan 11. I have a bit more arthritis pain and my hot flashes are definitely not fun, I worry about my bones but you won't hear me telling my onc that I don't want to take it anymore. It's a personal thing - I don't want a recurrence.
    {{hugs}} Char
  • sinee
    sinee Member Posts: 196 Member
    Options
    mcp21 said:

    Anastrozole
    Thanks to all of you. All comments help. I must admit, I am just as afraid of the side effects as the cancer returning. The swelling really scares me, making me think it is affecting my heart. Cindy, are you swelling too? Didn't know it can cause weight gain. Thats explained now. Thanks Again!

    feet swelling
    my feet were swelling and felt fat~now that i have started walking about 20 minutes a day I am noticing less swelling and even have managed to loose 9 pounds...the weight gain, was starting to get to me, I was up to 220. seeing progress is nice. not sleeping much though, some nights are great, others, not a wink of sleep...trying meditations next...a work in progress...i think i will keep taking the pill, i chose to have a lumpectomy and had 5 lymph nodes come back with cancer. So i will fight the fight with everything I can, and more. It is a personal decision, and no one can make it for me though...hang in there..mcp21...these decisions are never easy..sinee
  • CDReyn
    CDReyn Member Posts: 3 Member
    Options

    I have taken anastrozole for seven months with unfortunately multiple side effects. Some I can take in stride, but others are severe. The two that bother me most led me to seek consultation with other doctors. I have not seen these side effects mentioned except as rare ones in multiple studies in JAMA, NIH, etc.

    One is multiple severe overheating with dizziness, fainting and rapid heart rates, regardless of the activity. My cardiologist did an extensive study, with various tests ruling out everything, but the fact that I was dehydrated which was possibly contributing to rapid heart rates. Unfortunately, no amount of electrolytes or water mitigated the rapid heart rates.

    Before the breast cancer diagnosis, I exercised regularly and lifted weights. About 2 months into taking the anastrozole, I lost range of motion in my right arm with sharp pain running down my shoulder to my wrist and sometimes up to my neck. The doctor seemed to lean towards carpal tunnel syndrome. An in depth study is pending.

    I temporarily stopped taking the anastrozole to see if it was contributing to these two very quality of life limiting symptoms. Two weeks later, no more rapid heart rates (still having minor hot flashes) and range of motion along with pain in shoulder and arm have diminished substantially. I managed the gym this week with light workout.

    I have an appointment scheduled to consult again with oncologist for a way forward. Just curious, if anyone else has had this experience.

    I can handle some aches and pains, losing hair, and being hot a few times each day. Not being able to even stand up due to overheating and rapid heart rates ruled out going for a walk, driving, or going to the gym. Losing my right arm function meant not being able to bake or cook meals, giving up gardening and art. I am sorry for the length of my post. I am struggling to figure out how to cope. Terrible to decide what path to take. (BTW, I am also a 20 year survivor of a leiomyosarcoma as well the new IDC breast cancer diagnosis.)

  • Hilde56
    Hilde56 Member Posts: 2 Member
    Options

    I too am on Anastrozole and having several side effects. I have the same pain in my shoulder radiating down my arm. I have been using deep heat patches which does help at night. I am seriously considering going off of the medication. I have been having extreme fatigue to where I want to lay back down after being up for 2 hours. I have the joint pain on getting up and walk like an elderly person. I have been on the anti estrogen pill for 1 year now. I have also developed atrial fibrillation within the last 2 months. Not sure if that is connected with this drug or not. I see both cardiologist and oncologist next week. I have tried to find information on what the chances of reoccurrence is if not on hormone therapy but not having much luck. Thank you for posting. It is good to know I am not the only one. Take care and good luck. Kathy

  • Opto
    Opto Member Posts: 1 Member
    Options

    Hi, I joined this forum on my wife’s behalf. She started on Letrozole a year and a half ago. She switched to Anastrozole 6 months ago due to the side effects including hair loss, painful trigger finger, fatigue, severe joint pain and heart palpitations. Her white blood cell count was a little low before her double mastectomy, but it continues to drop on these aromatase inhibitors. She has made the decision to stop these medications based on her quality of life. 5 year’s minimum with the possibility of 10 on these meds was too much. We’ve decided to try the natural, healthy way. No sugar, alcohol, and lots of cruciferous veggies. Curcumin, lycopene are good too. Just google natural aromtase inhibitors and you’ll get a long list of healthy options. Good luck and God bless everyone in this situation.

  • Caradavin
    Caradavin Member Posts: 49 Member
    Options

    All I know is that my oncologist diagnosed me and wanted me on anaprozole. It's like that saying about the few for the many. Or that one about the bad things of it being little when compared to the good it does. I mean, I get really tired and weak sometimes and nausea is my new friend, but I do it to get better. Good luck on your choice.

  • Pambeck
    Pambeck Member Posts: 4 *
    Options

    The side effects of the drug are very scary and debilitating at times. I have found Veozah to be a game changer with the night sweats. You do have to monitor kidney function while you are on it. I couldn't function with the horrific night sweats so it was a choice I made. I am using some natural supplements that have worked very well for me in managing pain. My bone density is good but I am bone on bone in my left hip. I have been this way for around a year now and just recently the pain has increased. I can't say if it is the anastrozole, chemo or just aging that is causing this. I am only 59. I will continue with my supplements and increase the one I use for pain and see if that makes a difference.

  • Cariem
    Cariem Member Posts: 3 Member
    Options

    I had a lumpectomy Feb 2023, and 6 rounds of radiation in APril 2023. I have tried Anastrozole and Letrozole both after having side effects from each. I experienced bone pain and heart pain. For the past 2 weeks I have had a pain in that same breast, especially when I take a deep breath. My Dr has ruled out blood clots and my heart is strong. My mammogram isn't until April 10th which seems like an eternity away. I went in to my Dr last week for the ongoing pain, redness and swelling and he thinks I may have an infection. How did I get an infection internally? I was curious if anyone has experienced an internal infection at least 1 year after surgery? I am wondering if it's related the either of the AI meds. It just seems like such a strange thing to happen.

  • Caradavin
    Caradavin Member Posts: 49 Member
    Options

    Back to say that I got an infection, but not 1 year out. Actually, it was 1 day after rad treatments. I got MRSA. It put me in the hospital. I also have been getting sharp pains in my cancer breast, but on the other side of the lump. I have had the pains for at least a week now.