Debating AIs vs Tamoxifen with fibromyalgia, severe arthritis, EDS

Posted by cdammen @cdammen, Feb 13 5:06pm

Interested in learning from others about how they are keeping low grade cancer at bay while balancing a higher than normal risk of stroke against the bone and pain side effects from AIs—especially for someone already dealing with fibromyalgia, severe arthritis and EDS pain. Is Tamoxiphen the better option?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

lesliek808 | @lesliek808 | Feb 13 5:21pm

AIs are no fun, no matter which one you take. I also had fibromyalgia issues, pre-breast cancer, so I knwo exactly what you mean.

Anastrazole was totally awful and I could barely get out of bed after just taking it for a week, my muscles hurt so much. My oncologist switched me to Exemestane which is more tolerable. Less muscle pain, still have some fatigue but not as bad as before. Because of my age (over 60), Tamoxifen wasn't offered to me.

Did the oncologist offer you Tamoxifen as the very last option for endocrine therapy?

cdammen | @cdammen | Feb 13 11:37pm

I am 71 with some existing heart issues. The breast clinic was not keen on Tamixiphen for me but as I look at a 2 percent risk of stroke vs a 30-50 percent risk of severe, persistent pain complicated by bone loss or the high risk of althralgias with bone meds, a 2 percent stroke risk looks better all the time.

jmab | @jmab | Feb 14 12:00pm

Everyone is different but I'm 72 & also low-grade, stage 1 & I take a half-dose of tamoxifen (10mg), to help protect my bones. Just started Jan 1st, but so far, so good!

cdammen | @cdammen | Feb 14 12:18pm

In reply to @jmab "Everyone is different but I'm 72 & also low-grade, stage 1 & I take a half-dose..." + (show)

@jmab I know stroke can be devastating and my family has a history of stroke on both sides. Does your family? Are you doing anything for vascular protection as you go forward with tamoxifen?

jmab | @jmab | Feb 14 11:32pm

In reply to @cdammen "@jmab I know stroke can be devastating and my family has a history of stroke on..." + (show)

@cdammen The short answer is no. But I hear your concerns. For now I will stick with the half-dose of Tam which I assume carries less risk. But I plan on getting a 2nd opinion from a different oncologist in the next few months. It's such a gamble in every way. The AI's carry their own negative risks. So, for me, the 10 mg of Tam is the lesser of the 2 evils for the time being.

cdammen | @cdammen | Feb 15 7:39am

In reply to @jmab "@cdammen The short answer is no. But I hear your concerns. For now I will stick..." + (show)

@jmab Thank you. It is helpful to hear about your experience.

jmab | @jmab | Feb 15 8:43am

In reply to @lesliek808 "AIs are no fun, no matter which one you take. I also had fibromyalgia issues, pre-breast..." + (show)

@lesliek808 it's interesting how different our experiences are. I'm 72 with early-stage ILC & the 1st oncologist suggested an AI but at the cancer center where I ended up, that oncologist insisted on Tamoxifen because I have a history of border-line osteoporosis. His view is that because Tam helps bones, the benefits outweigh the risks in my case. I am taking a half-dose (10 mg) of Tam.

Colleen Young, Connect Director | @colleenyoung | Feb 15 5:35pm

@cdammen, you might also be interested in these discussions related to breast cancer treatments and living with fibromyalgia.
https://connect.mayoclinic.org/group/breast-cancer/

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