Not being heard? Be the squeaky wheel! If you have a problem, continue to raise it until someone is willing to figure it out.

When I was taking tamoxifen, I was ok, until I wasn’t. I got a cold and took a break from running while I recovered. Then the wheels fell off. I started getting rashes. I was full of fluid at the end of every day (like pitting edema in my legs, full of fluid). My lymphedema became chronic because of the body fluid. And I gained 10 pounds in under a month, while reducing my calorie intake. Yet every doctor I spoke to, with the exception of one, was unwilling to discuss it.

My GP was like, this fluid is concerning. But the 10 pounds was ok? Seriously? One of my docs said I should do whatever my oncologist said regardless of how sick it made me. My oncologist put me on a diuretic which my cardiologist was 100% against. My cardiologist was the only one willing to figure it out because he did not like the fluid I was retaining as an otherwise healthy, active person. 

I ended up figuring out that the tamoxifen had gluten. I am celiac. This means I was allergic to the medication. The first warning… do not take it if you are allergic. Hence I contacted my oncologist’s office and said, I am allergic to this, unless you find a gluten free option I have to stop. I stopped, my symptoms cleared up. Fun fact, at the time there was only one option and because I was not postmenopausal I did not qualify without a $1000/mo. shot. I opted out.

My allergy took a couple of months to figure out. Mostly because no one wanted to discuss it. As it turned out it was also causing cognitive issues, a common celiac issue for people being exposed to gluten. After about 3 months I was finally getting back to some version of normal. I cannot stress enough how important it is to advocate for yourself and be able to engage in productive conversations with your medical team. My oncologist was not thrilled I could not take the meds. However, he understood allergies. He also believed that my otherwise healthy lifestyle of good diet and regular exercise was giving me a level of protection from recurrence so he could be ok with me opting out of meds.

Did you experience a side effect that was dismissed or hard to pin down?

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