Any Options other than AI's

mgm42
mgm42 Member Posts: 491 Member
edited March 2014 in Breast Cancer #1
Has anyone stopped taking their aromatase inhibitors (femara, aromasin, or arimidex)due to debilitating side effects? I have been on two of the three and am having muscle spasms and instances where my muscles seize up on me. It's painful, frightening and happens frequently. The problem is from my waist up includini my entire torso, shoulders, neck, head and arms. It has become debilitating. My primary care physician tested me for lupus, AL, and several other diseases that affect the muscles, plus my potatsium and mineral levels. Everything is clear. We were left to conclude that it was the aromatase inhibitors. I've called my oncologist and asked her to review my pathology and my oncotype test results and discuss what options may be available to me. I should hear from her this week.

I feel caught between a rock and hard place. I'm at high risk for recurrence (according to the Oncotype rest) but the side effects are debilitating and limiting me physically in my day to day life. Has anyone else been in this boat? Please, please let me know. I've been able to dodge the "depression bullet" caused by the AI's, but I'm starting to feel trapped and it's not a good feeling. Thanks a bunch. Hugs, Marilynn

Comments

  • phoenixrising
    phoenixrising Member Posts: 1,508
    #2
    Marilynn, I'm so sorry you
    Marilynn, I'm so sorry you haven't found one that gave you quality of life yet. I went from Tamoxifen to Arimidex and now on Aromasin and that seems to be the kindest of all. For me anyway. You didn't mention Tamoxifen. Have you tried that yet?? Other than that, the third AI you haven't tried just might be the one. I know its disheartening. After the chemo I thought I would just heal up and carry on. I wasn't expecting such a battle with these drugs. Other than fatigue and some brain malfunction :), OK, maybe a little stiffness, but other than that it seems doable. Hope you find some relief.

    hugs
    jan
  • mgm42
    mgm42 Member Posts: 491 Member
    #3
    phoenixrising said:

    Marilynn, I'm so sorry you
    Marilynn, I'm so sorry you haven't found one that gave you quality of life yet. I went from Tamoxifen to Arimidex and now on Aromasin and that seems to be the kindest of all. For me anyway. You didn't mention Tamoxifen. Have you tried that yet?? Other than that, the third AI you haven't tried just might be the one. I know its disheartening. After the chemo I thought I would just heal up and carry on. I wasn't expecting such a battle with these drugs. Other than fatigue and some brain malfunction :), OK, maybe a little stiffness, but other than that it seems doable. Hope you find some relief.

    hugs
    jan

    Thanks, Jan
    Thanks for your comments. I've been on Arimidex, then Aromansin - which caused mild depression and the starts of the real muscle problems. Now I'm back on the Arimidex, but the muscle problems now continue with this drug. Femara would be my last of the three, but i understand that Femara is the strongest of all three. I am going to talk about Tamoxifen. I understand it works differently and considering I'm 67 years old and have been out of menopause for years, it just might be the answer. I don't want to go without any type of inhibitor, but I may have to. It's scares me. thanks again, Hugs, Marilynn
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #4
    mgm42 said:

    Thanks, Jan
    Thanks for your comments. I've been on Arimidex, then Aromansin - which caused mild depression and the starts of the real muscle problems. Now I'm back on the Arimidex, but the muscle problems now continue with this drug. Femara would be my last of the three, but i understand that Femara is the strongest of all three. I am going to talk about Tamoxifen. I understand it works differently and considering I'm 67 years old and have been out of menopause for years, it just might be the answer. I don't want to go without any type of inhibitor, but I may have to. It's scares me. thanks again, Hugs, Marilynn

    Best of luck to you
    Best of luck to you Marilynn. Tamoxifen does work differently, it blocks estrogen at the receptor site and AI's prevent your body from manufacturing estrogen. But in the end these drugs do a lot more that just that as we can tell from our se's. If you do decide to go on Tamoxifen I hope your onc is open to having you tested to see if you will actually metabolize the drug so you don't waste years thinking it's doing something for you when it isn't. Not all oncs agree with this testing but for myself I'd rather err on the side of caution. Good luck and hope you find success with Tamoxifen.

    hugs
    jan
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #5
    phoenixrising said:

    Best of luck to you
    Best of luck to you Marilynn. Tamoxifen does work differently, it blocks estrogen at the receptor site and AI's prevent your body from manufacturing estrogen. But in the end these drugs do a lot more that just that as we can tell from our se's. If you do decide to go on Tamoxifen I hope your onc is open to having you tested to see if you will actually metabolize the drug so you don't waste years thinking it's doing something for you when it isn't. Not all oncs agree with this testing but for myself I'd rather err on the side of caution. Good luck and hope you find success with Tamoxifen.

    hugs
    jan

    I haven't started any
    I haven't started any hormone therapy yet. I hope you find something that has few side effects for you Marilyn.

    Hugs
  • poetjanet
    poetjanet Member Posts: 1
    #6
    natural supplement alternative to AL's
    Hello Marilynn,

    I just had a lumpectomy on wed, so I have just started my journey, but at breastcancer.org I saw women talking about a natural supplement called MYOMIN that is a natural aromatase ihibitor. It blocks estradial but not estriol. It is made my chi enterprises. I found a website from the UK that has a few case histories on it helping women with breast cancer. I know I will face an uphill battle trying to convince any doctor or my husband to let me try that. I am ER+ by 42%< and quite concerned about side effects I have seen for AL's. But since you found you can't take them, it would be worth checking into the Myomin for you. I'm new here so I don't know if you are allowed to post links. but if you google Myomin, Chi enterprises, UK you may find it. Wish I knew more about it, but just looking into it for myself as well. Pray you do well!

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