Struggling with the side effects of arimidex: advice please?

Options
gracegotmehere
gracegotmehere Member Posts: 19
in Breast Cancer #1
I've only been on arimidex for four weeks and I am wondering how I can continue.  Woke up today at 3 a.m. with severe back pain-- I feel joint pain almost constantly, have a hard time standing up straight when I get out of a chair.  My life is busy with 3 kids so I still keep going but at times am wincing or blinking back tears.

Background: I found out I was BRCA-2 positive so had my ovaries removed 3.5 months ago, then bmx for bc (stage 1, ER+)  I can handle the hot flashes-- would be dealing with those w or w/o arimidex-- but the constant joint pain, and worrying about how to withstand 5 years of it, all while worrying about my bones thinning / risk of fracture and / or osteoporosis (strong family history of that) and ...

I know I can try other drugs, but their "numbers" for recurrence / metastasis are not as good as those for arimidex / anastrozole.

I would never have guessed that I would be contemplating discontinuing use of a drug that will help fight cancer.  I would have guessed that my desire to fight with every single ounce of strength that I have got would override pain and fear.  I joked with my husband, "So this is what it feels like to be 70" but it is no laughing matter.  I'm not sure I can continue taking it.

 

Advice???

Comments

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #2
    Options
    .. bumping up topic

    bumping up ...

  • MrsBob
    MrsBob Member Posts: 77
    #3
    Options
    Hi

    Hi!

    I took Arimidex for 2 years and recently I couldn't take the side effects anymore as they were getting worse. I put up with weight gain, joint pain (that would go away as soon as I moved around), irritability, and fatigue. I also take a shot called Xgeva which is wonderful for bones and also the cancer. I have been in "remission" (as much as a stage 4 bc mets woman can be:) for 2 years. Lately I was hurting alot worse, even my ankles were stiff and painful, quality of life was becoming not good as I didn't want to do anything but lay and hide on the couch, and I had been fighting depression (general sadness for no reason what so ever.) My Onc took me off Arimidex and said something about toxicity buildup. I trust her completely so I didn't ask for further info on that. Its been over a week since Ive had any meds and I feel so much better. My mind instantly is clear and happy. I am having bad back pain still. Not sure if its something from arimidex that will take a while to go away, our mattress, or just from the old lesion being achey.

    Anyways, I start Aromasin Friday. Kinda nervous but trying to be positive. I am going to enjoy these last few days without meds tho!!

    There are some things you can do or take to help with side effects. Ask your Onc. I use to take one Aleve a day. You may find your side effects get more tolerable. Also, walking daily and drinking LOTS of water helps SO much.

    I hope things get better for you. Arimidex is a great med to fight cancer.

    Missy

     

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #4
    Options
    MrsBob said:

    Hi

    Hi!

    I took Arimidex for 2 years and recently I couldn't take the side effects anymore as they were getting worse. I put up with weight gain, joint pain (that would go away as soon as I moved around), irritability, and fatigue. I also take a shot called Xgeva which is wonderful for bones and also the cancer. I have been in "remission" (as much as a stage 4 bc mets woman can be:) for 2 years. Lately I was hurting alot worse, even my ankles were stiff and painful, quality of life was becoming not good as I didn't want to do anything but lay and hide on the couch, and I had been fighting depression (general sadness for no reason what so ever.) My Onc took me off Arimidex and said something about toxicity buildup. I trust her completely so I didn't ask for further info on that. Its been over a week since Ive had any meds and I feel so much better. My mind instantly is clear and happy. I am having bad back pain still. Not sure if its something from arimidex that will take a while to go away, our mattress, or just from the old lesion being achey.

    Anyways, I start Aromasin Friday. Kinda nervous but trying to be positive. I am going to enjoy these last few days without meds tho!!

    There are some things you can do or take to help with side effects. Ask your Onc. I use to take one Aleve a day. You may find your side effects get more tolerable. Also, walking daily and drinking LOTS of water helps SO much.

    I hope things get better for you. Arimidex is a great med to fight cancer.

    Missy

     

    Thank you Missy for providing such VALUABLE

    information ...

     

    Vicki Sam

  • pamcb3
    pamcb3 Member Posts: 44
    #5
    Options
    Been there!!!!!'

    uggggg! Boy can I empathize! I tried them all and they were all bad! The arimidex was the worst but that was the one my oncologist wanted me on. Well I was given a website to check out about testosterone pellets that were combined with the aromatase inhibitor. I believe it was hormonebalance.org That directed me to the millenium wellness clinic in Dayton Ohio where Dr. Rebecca Glaser is doing this. Well my oncologist agreed to me going. I went twice and now the pellets get sent to me ( ordered by my oncologist) and then my oncology surgeon puts them in.... Takes ten minutes tops! Doesn't hurt and it helps amazingly with side effects!!! I get the pellets every 3 mos. it cost me $125.00 plus an office visit! If it weren't for this I would have chosen not to take anything because my quality of life was horrible! The pain was worse than chemo! There is no way I could live like that for 5 years!!!! The only side effect from the pellets is some extra chin hair! I have that anyway! That's what wax and tweezers are for!!! Give it a try!!:)

  • sbmly53
    sbmly53 Member Posts: 1,522
    #6
    Options
    I switched

    from Arimidexto Aromasin. I was on Arimidex for 4 1/2 years. I hurt. Joint pain. My feet and ankles were so stiff, I looked like I had wooden joints. True, if I walked long enough, they would loosen up, but really? I was off for 6 weeks since I wanted to see if I would see a difference. I couldn't believe how much better I felt!

    I have been on Aromasin for 4 months. I am just starting to have some pain/stiffness in my heels. The weather has been crappy and I do have fibromyalgia, so I am hoping that that is all it is.

    so, do what you need to do for yourself. Once you make your decision, do not second guess yourself.

    sue

     

  • gracegotmehere
    gracegotmehere Member Posts: 19
    #7
    Options
    sbmly53 said:

    I switched

    from Arimidexto Aromasin. I was on Arimidex for 4 1/2 years. I hurt. Joint pain. My feet and ankles were so stiff, I looked like I had wooden joints. True, if I walked long enough, they would loosen up, but really? I was off for 6 weeks since I wanted to see if I would see a difference. I couldn't believe how much better I felt!

    I have been on Aromasin for 4 months. I am just starting to have some pain/stiffness in my heels. The weather has been crappy and I do have fibromyalgia, so I am hoping that that is all it is.

    so, do what you need to do for yourself. Once you make your decision, do not second guess yourself.

    sue

     

    Thank you

    Thanks for sharing your experiences with Arimidex, friends.  I talked to my onc and told him I wanted to stop taking it.  He said try one week off and then let's talk.  Of course I want to drive cancer off with every tool in the arsenal... so after that week and that talk I'm taking it again and hating it again.  deep sigh.  I am walking my dogs and cooking super healthy for me and my family.  I'm drinking lots of water and doing my yoga...  And praying and praying-- and getting my prayer warriors to join me in praying-- for God's grace to see me through this newest challenge.  The irony is that I was so relieved that I did not need to do chemo or radiation.  I had no idea that five years of Arimidex would look and feel so daunting.

    Somewhere online I read someone who said Arimidex made her feel like she was wrapped in pain.  Well said!  I am trying to redirect my thoughts-- trying to take my own conscious awareness of my pain and let it remind me / help me imagine that those dormant cancer cells, all those that went wandering into other places in my body, are feeling the pain too, only I hope much, much, MUCH worse.  

     

Discussion Boards