Let the Clinical Trials Begin

  It's official. I qualify for and will be starting the SURMOUNT clinical trial in January 2026. It wasn't without much thinking that this decision was finally made. My family supported me from the beginning and I will be able to see them with my trips to Philadelphia. The clinical trial navigator was very patient as I asked a million questions to ensure I understood what was required of me for the study. My oncologist supports the trials as long as I can be on an aromatase inhibitor to keep my estrogen at bay. I can. It's a pretty set thing that I'll stay off the Tamoxifen at this point.

 

 Both the SURMOUNT and ABBY trials are being completed at the University of Pennsylvania in Philadelphia, PA. It's amazing how a life comes together. I ended up going to Drexel University in Philadelphia for my Doctor of Physical Therapy education. That has now prepared me to feel comfortable in the city of brotherly love, despite living so far away in Alaska.

Philly, here I come!

Tamoxifen Revisited Revisited

 I started writing this post in July of this year and forgot to finish it. Here you go:

 I have previously written a post about tamoxifen. At that time, the consideration was aromatase inhibitor vs. tamoxifen and what is right for me. Per my oncologist, tamoxifen is the better choice at this time due to its bone and heart protective properties as compared to an aromatase inhibitor. The plan is for 2-3 years of tamoxifen then a switch to an aromatase inhibitor for 7-8 to complete the 10 years of treatment.

 I have recently learned of certain supplements, medications, and food that should not be taken with tamoxifen and figured I would share. I was not told of these by my care team.

Supplements:

https://owise.uk/tamoxifen-what-you-should-avoid/

https://www.breastcancer.org/treatment/hormonal-therapy/tamoxifen

https://pmc.ncbi.nlm.nih.gov/articles/PMC10558019/

 Fast forward to now, being off of tamoxifen. I wrote in my last post that I would explain the mechanism of action. Tamoxifen is a selective estrogen receptor modulator (SERM). Due to this, tamoxifen acts as an anti-estrogen in breast tissue, blocking estrogen receptors to stop tumor growth, but acts as an estrogen-like substance in other tissues. This selective estrogen receptor modulator effect means it can improve bone density and lower cholesterol, but also increase the risk of uterine cancer and contribute to menopausal-like symptoms. This matters because I have a distant history of estrogen induced aural migraines. The hypothesis is that the tamoxifen may have recreated the environment for an aural migraine to resurface. Only time will tell.

 All this to say, always speak up if you're feeling something that is off. There are options to get treatment or change treatment depending on what is causing the symptom. Don't just live with it or chalk it up to having cancer.

Tamoxifen Revisited

 I had the fortunate ability to be a secret shopper with my patient experience role while needing emergency department (ED) services on Tuesday. I had floaters in my vision and expressive aphasia with both switching words and not being able to find the word I wanted. While I would have told my husband or family/friend to get to the ED ASAP, I kept working my PT shift and then decided to call my oncologist. He advised that I go to the ED. A caring, compassionate, and timely intake and processing through the ED including a brain MRI later, I got the good news there was no signs of a stroke, brain metastases, or brain lesions. 

 Fast forward to the next day and I get a call from my oncologist to see if I wanted to come in for a follow up visit. I did and based on my horrific ongoing side effects (significant fatigue, brain fog, apathy, weight gain) from tamoxifen along with his hypothesis that tamoxifen may have played a role in what may have been an aural migraine, he recommended I stop tamoxifen for a month, we reassess, and then potentially go on an aromatase inhibitor. I will post on the exact mechanism of action and why this makes sense a different day.

 This sounded great to me because me, the person who always does everything by the book, did not have tamoxifen in her pill box for one week and wondered why she felt amazing and was having everyone say I sounded like me again. My oncologist says that likely confirms his hypothesis but wanted to trial off of it for a month, which he said won’t hurt my recurrence rate.

 Day one off tamoxifen: I felt like posting. I planned ahead. I took the stairs… every time. I helped so many coworkers with what they need and patients with what they need. One said, “You have no idea how much you've helped me.  My husband died 2 weeks ago and my world has been inside-out since then. Nothing makes sense and I've been extremely at odds.  Your call this morning is the first hint of hope.” after I returned a simple phone call asking for resources. I felt like me again.

 Let’s hope this continues.