Taking Arimidex

JudyAS
JudyAS Member Posts: 48
edited March 2014 in Breast Cancer #1
Hi everyone,
I am sitting here trying not to cry, but I have now been on Arimidex the 13th of August. I had a mastectomy with two different cancers on May 7, 2009. I have had to have the drain tube put back in twice because after the radiation I was bleeding very badly under the skin. They finally removed it just 3 days ago, it is still bleeding out, but that is okay for me, that means it isn't building up on the inside. But that is now what I am writing to you ladies about. I can't take the way this Arimidex is making me feel. I am 69 years old, and it is getting to the point the pain just to walk across the room is getting unbearable. I am in pain when I go to bed and in pain when I get up in the morning. My husband wants me to quit taking it for a few days and see how I feel. If I go to my medical doctor all he wants to do is put me on antidepressants. Sure I am depressed because I have never felt as bad as I feel right now. Has anyone else had a problem with this drug and if so what did you do about it. I want to not take if for a few days before I call my Oncology doctor because I know he is going to tell me I have to take it. Is it worth feeling like this for the next five years. I need some input and I am not a cry baby. My family is suffering right along with me and this isn't fair to them.
What should I do.
Hugs to you all, Judy

Comments

  • djacobs40505
    djacobs40505 Member Posts: 2
    taking arimidex
    my mom is taking the same drug for the past few weeks and has been in a great deal of pain and she cries all the time. I am not sure what to do. I have called her oncologist but havent heard from them do you cry all the time too?
  • ladydi1
    ladydi1 Member Posts: 120
    Arimidex
    Judy:
    I have been on Arimidex for a year now with unfortunately, all of the bad side effects:insomnia, deep depression, crippling bone pain, swollen legs, high blood pressure, extreme hot flashes, and blood clots. I am 60 and had 2 types of left breast cancer both considered aggressive so, after surgery, chemo and rads, my oncologist insisted I need 5 years of Arimidex. On Sept. 1st I made the decision to stop Arimidex and not to go on another AI in its place. It is a quality vs quanity of life issue for me. This is what I have been told by the medical profession. It will take 6 weeks for the side effects/Arimidex to leave my system. Because my bone pain is still so bad 2 weeks out, I requested an alkaline phosphatate test to see if there is any sign of bone mets (a high reading can signal a problem) I will go back to my oncologist after the 6 week period to see if the bone pain continues and needs further testing.
    This is a very personal decision, and one only you can make as you alone will have to live with your decision. I can only share what my decision was and wish you the best with whatever you decide to do. Whatever you decide, be at peace with it, move forward and don't look back or what if yourself.
    Hugs,
    Ladydi1
  • chenheart
    chenheart Member Posts: 5,159
    I am so very sorry that you
    I am so very sorry that you are having such a bad time on the Arimidex~ I know there are other hormone blockers you can take. Please, please, please call your Oncologist, NOT your GP! Taking anti-depressants isn't such a bad idea, but it won't alleviate your bone pain!And with such pain, of course you are sleep deprived and depressed! Who wouldn't be???

    I am 60, and took the Arimdex for 5 years~ I must say I didn't have ANY adverse side-effects, and my Dr asked me every time I went in to see how how I was tolerating it. I was one of the lucky ones who had no slow down of activities at all during the 5 years. I didn't count not sleeping as a side-effect, as I got lots of movies watched and books read that I didn't previously have time for!

    You, and also your family should by no means have to suffer through this~ make your voice heard!

    I hope you find a resolution to this ASAP; please let us know what your Dr says!

    Hugs,
    Chen♥
  • mgm42
    mgm42 Member Posts: 491 Member
    Vacation from Meds
    Judy, ask your oncologist if you can take a break for a month and see how you feel. That's what mine did for me and during that month my side effects went away. However, they did come back when I went back on Arimidex. If your symptoms lessen, it will make your decision easier to make. I will send you a private message when my computer decides to cooperate with me. Good luck kiddo. I empathize with you. Hugs, Marilynn
  • lanie940
    lanie940 Member Posts: 490
    chenheart said:

    I am so very sorry that you
    I am so very sorry that you are having such a bad time on the Arimidex~ I know there are other hormone blockers you can take. Please, please, please call your Oncologist, NOT your GP! Taking anti-depressants isn't such a bad idea, but it won't alleviate your bone pain!And with such pain, of course you are sleep deprived and depressed! Who wouldn't be???

    I am 60, and took the Arimdex for 5 years~ I must say I didn't have ANY adverse side-effects, and my Dr asked me every time I went in to see how how I was tolerating it. I was one of the lucky ones who had no slow down of activities at all during the 5 years. I didn't count not sleeping as a side-effect, as I got lots of movies watched and books read that I didn't previously have time for!

    You, and also your family should by no means have to suffer through this~ make your voice heard!

    I hope you find a resolution to this ASAP; please let us know what your Dr says!

    Hugs,
    Chen♥

    Well, if I have to take it,
    Well, if I have to take it, I hope I'm lucky like you. I take Wellbutrin, have for YEARS. I've never had any side affects I'm aware of. I take Benicar for BP and had none from that either. But I DID from Fosamax. I think it gave me GERD (acid Reflux)It maybe also made me gain weight, but i don't know for sure. But since I've been off of it because of the acid reflux, I lost 40 lbs. I was on it for like 4 yrs, and I gained like, 30 lbs. So, who knows!I have not really had any bad side effects from Meds except Nyquil! I passed out in the Hallway after taking it earlier in the evening. I got up to pee around 3am and my husband found me on the floor in the hallway.

    I never took estrogen replacement pills, my friend did and thinks they gave her her breast cancer. She had a mastectomy about 11 yrs ago. She is doing fine and she had no chemo,no rads, and no hormones!
  • JudyAS
    JudyAS Member Posts: 48
    mgm42 said:

    Vacation from Meds
    Judy, ask your oncologist if you can take a break for a month and see how you feel. That's what mine did for me and during that month my side effects went away. However, they did come back when I went back on Arimidex. If your symptoms lessen, it will make your decision easier to make. I will send you a private message when my computer decides to cooperate with me. Good luck kiddo. I empathize with you. Hugs, Marilynn

    Thanks Marilynn for the
    Thanks Marilynn for the advice. My husband and son said they can't handle the mood swings either. I will call my oncologist but he was so insistant that I "will" take the Arimidex I am afraid he will tell me I have to. But I am giving myself a break right now and hope I will notice some difference. I can't tolerate feeling so bad that I can't even make myself go to the store. Now that is bad.
    Hugs Judy
  • JudyAS
    JudyAS Member Posts: 48

    taking arimidex
    my mom is taking the same drug for the past few weeks and has been in a great deal of pain and she cries all the time. I am not sure what to do. I have called her oncologist but havent heard from them do you cry all the time too?

    About your mom
    Yes I cried a lot because of the depression and the mood swings and pain. I couldn't hardly talk to my husband without crying. He agreed I had to stop taking the medication.
    He said with the way I was that we couldn't even go on any little trips because I wasn't able. I can't live like that and I know when I call my oncologist he is not going to like it, but I feel this is my body and I have the right to say yes or no. So call your mom's doctor and tell them what is happening. God Bless her. She is in my prayers.
    Hugs Judy
  • marywest
    marywest Member Posts: 132
    Arimidex
    I have been on Arimidex for a couple of months. In the mornings I felt like I was ran over by a Mac truck. Heck with this stuff. I quit taking it a few days ago. I will be seeing my Cancer doctor next month and will tell her i quit. I am not concerned about her reaction, I am concerned about my body and how it feels. I can not heal up when I am in pain and can barely walk. That causes mental anquish and when your mind and body is messed up, it brings on other sicknesses. I refuse to take another pill, if my doctor can come up with something better, great, I will try it.
  • judithhmf
    judithhmf Member Posts: 2
    Hi Judy,
    I was on arimidex

    Hi Judy,
    I was on arimidex for five years. It was painful at first then I either got used to it or it got less painful. I was 63 when I started. You should call your oncologist because there are other aromatase inhibitors you could take such as femara. They may not have the same side effects. I am now in a clinical trial either taking femara or a placebo.
    Good luck
  • dmc_emmy
    dmc_emmy Member Posts: 549
    judithhmf said:

    Hi Judy,
    I was on arimidex

    Hi Judy,
    I was on arimidex for five years. It was painful at first then I either got used to it or it got less painful. I was 63 when I started. You should call your oncologist because there are other aromatase inhibitors you could take such as femara. They may not have the same side effects. I am now in a clinical trial either taking femara or a placebo.
    Good luck

    Judy, I also was on arimidex
    unfortunately, I could not continue with it. I am very sensitive any kind of medication. I took arimidex for only 4 months. Since that time, I have tried two other aromatases (I cannot remember the name of the one, but I was on it for only a month). The last one I tried was Femara. I have known several women who have used this one without many of the side effects. Again, unfortunately, I could not continue with it either and I stopped all of my meds. I tried for a total of 2 and 1/2 years with the various drugs.

    There are options, and I hope one of these might work for you:
    1) ask your onc to experiment with a different schedule (every other day, or 3 months on and one month off)
    2) switch to another med, but remember it may take awhile for the effects of the other med to be out of your system (for me, it took 2+ months for the Femara effects to wear off)
    3) combine the aromatase meds with motrin to relieve some of the pain effects

    The effects from these drugs are substantial. The pain, for me, was the least of them while I was on the Femara. The pain on the other two was excrutiating and I had no choice but to stop. I made this choice, but it may not be the right choice for you. Everyone us must make the decision that is best for their individual situation. As for me, it was to end all the meds.

    I hope you consider talking with your onc about your options, ask to have a direct discussion with him/her about the consequences of your decision, and ask your dr to be creative in finding a way that you can possibly continue with one of the meds. I tried the latter for some time before making my final decision to stop. I beleive that you owe it to yourself to try every avenue that you can, then you know, regardless of your decision, that you did everything you could to follow the medical program advised for your specific type of caner.

    You can always quit once you have started (and tried), but you can't quit unless you have started. I try to live by this in everything that I do.

    Best of luck to you. I know that this will probably be the hardest decisions you will ever be asked to make, but you are a survivor and making tough decisions is what survivors do best :).
    dmc
  • mgm42
    mgm42 Member Posts: 491 Member
    dmc_emmy said:

    Judy, I also was on arimidex
    unfortunately, I could not continue with it. I am very sensitive any kind of medication. I took arimidex for only 4 months. Since that time, I have tried two other aromatases (I cannot remember the name of the one, but I was on it for only a month). The last one I tried was Femara. I have known several women who have used this one without many of the side effects. Again, unfortunately, I could not continue with it either and I stopped all of my meds. I tried for a total of 2 and 1/2 years with the various drugs.

    There are options, and I hope one of these might work for you:
    1) ask your onc to experiment with a different schedule (every other day, or 3 months on and one month off)
    2) switch to another med, but remember it may take awhile for the effects of the other med to be out of your system (for me, it took 2+ months for the Femara effects to wear off)
    3) combine the aromatase meds with motrin to relieve some of the pain effects

    The effects from these drugs are substantial. The pain, for me, was the least of them while I was on the Femara. The pain on the other two was excrutiating and I had no choice but to stop. I made this choice, but it may not be the right choice for you. Everyone us must make the decision that is best for their individual situation. As for me, it was to end all the meds.

    I hope you consider talking with your onc about your options, ask to have a direct discussion with him/her about the consequences of your decision, and ask your dr to be creative in finding a way that you can possibly continue with one of the meds. I tried the latter for some time before making my final decision to stop. I beleive that you owe it to yourself to try every avenue that you can, then you know, regardless of your decision, that you did everything you could to follow the medical program advised for your specific type of caner.

    You can always quit once you have started (and tried), but you can't quit unless you have started. I try to live by this in everything that I do.

    Best of luck to you. I know that this will probably be the hardest decisions you will ever be asked to make, but you are a survivor and making tough decisions is what survivors do best :).
    dmc

    Similar Experiences
    DMC - Your experience with AI's parallels mine. I'm on a one month vacation from Arimidex right now and will start Femara - my last hope in this class of drugs in about 4 weeks. I can't take Tamoxifen because I've already had surgery for a blocked carotid artery and the chance of stroke and/or blood clots would be extremely high in my case. So, on to the Femara. But, I've already discussed a one month off, two months on regime with my oncologist if I can't tolerate the Femara on a daily basis. She said it would be something to consider. Not a yes, but not a no, either. So, we'll see. I agree with you that we sometimes have to be creative so we can get the maximum from what might be the minimum. Thanks for sharing. Hugs, Marilynn
  • dmc_emmy
    dmc_emmy Member Posts: 549
    mgm42 said:

    Similar Experiences
    DMC - Your experience with AI's parallels mine. I'm on a one month vacation from Arimidex right now and will start Femara - my last hope in this class of drugs in about 4 weeks. I can't take Tamoxifen because I've already had surgery for a blocked carotid artery and the chance of stroke and/or blood clots would be extremely high in my case. So, on to the Femara. But, I've already discussed a one month off, two months on regime with my oncologist if I can't tolerate the Femara on a daily basis. She said it would be something to consider. Not a yes, but not a no, either. So, we'll see. I agree with you that we sometimes have to be creative so we can get the maximum from what might be the minimum. Thanks for sharing. Hugs, Marilynn

    Marilynn-we are kindred spirits
    I don't know if that's a good thing or a bad thing, considering the subject :) or:(. I, too, have a blood clotting risk (I have Factor 5 Liden) and, therefore, could not take Tamoxifen.

    The off-set schedule, for me, worked for awhile...but after the Femara built-up in my system I could not tolerate it. I hope it works for you. I hope I'm just an "odd bird" when it comes to these drugs. Even the homopathic meds caused me some issues. Oh well...I'm not regretting my decision.
    dmc
  • kat_harina
    kat_harina Member Posts: 6
    marywest said:

    Arimidex
    I have been on Arimidex for a couple of months. In the mornings I felt like I was ran over by a Mac truck. Heck with this stuff. I quit taking it a few days ago. I will be seeing my Cancer doctor next month and will tell her i quit. I am not concerned about her reaction, I am concerned about my body and how it feels. I can not heal up when I am in pain and can barely walk. That causes mental anquish and when your mind and body is messed up, it brings on other sicknesses. I refuse to take another pill, if my doctor can come up with something better, great, I will try it.

    So glad to see your post!
    Hi Mary-

    I am so glad to see your post. You are in my prayers!

    From the heart,

    Kat