013: Stage IV Needs More with METUP President Susan Rahn

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SHOW NOTES:

Welcome back to Season 2 of the Intersection of Cancer and Life. It feels a little crazy to be back behind the microphone again - so much has happened in the last couple of months. When season 1 finished, I had just received my December PET scan results, which weren’t good. The scan showed progression in my bone lesions (translation - the breast cancer cell pockets in my bones that had been kept at bay by my treatment were no longer responding to my treatment, and had spread). This meant that I needed to switch treatments, and fairly fast. It was also the week before Christmas, and my family and I had planned a relaxing week away with my in-laws on their farm. But yet again, cancer had other plans.

Fortunately, I suppose, my Oncologist was able to find a clinical trial that she was very excited about, and I was accepted into the trial. I signed the consent forms to participate in the trial on December 21st. It felt fitting that it was the longest night of the year because I found myself in one of the darkest places I had ever known.

When we came back from our trip on New Years Eve (and I was a real peach to be around for that whole week, let me tell you), instead of planning a festive get-together to ring in 2019, I spent the majority of the day undergoing more testing - this time, a CT scan and a bone scan - as part of the clinical trial intake. Two days later, more tests: a physical, an EKG, and a meeting with the clinical trial team. A few more days later, a bone biopsy, then finally, I was cleared to start the trial drug.

Having not had any prior experiences with clinical trials, I didn’t know what to expect. However, I quickly learned that with these trials, it’s one foot in front of the other, and you’ll know what you know when you know it, and not a moment too soon. In other words, yet another lesson in patience from the breast cancer gods. Fucking patience. I felt like I had been in a holding pattern for close to a month before I was finally able to start the trial drug (as a side note, this is a phase 1B dosing trial, which means that there is no placebo. If that sounds like gibberish to you, don’t worry - it just means that it’s an early stage trial and I’m definitely on the new drug, not a sugar pill or anything) but eventually, I was given the green light by the clinical trial and started the new medication.

You might remember from last season, but if you don’t, my first line of treatment was an oral targeted therapy - a drug called Ibrance, in combination with a second drug that blocked hormone receptors, called letrozole. This is a pretty standard treatment for estrogen positive metastatic breast cancer, particularly for those with bone metastases like mine. However, it’s not as common to jump from the first line of treatment to a clinical trial, and, because of this, we had no idea what to expect.

In navigating the maze of metastatic breast cancer, today’s interview feels particularly important, especially to me, as I recorded this episode last December, the day after my scan - while I waited for the results that I would find showed progression in my disease. My guest is Susan Rahn, a vehement advocate for both Metastatic Breast Cancer and Medical Aid in Dying. Susan was diagnosed with metastatic breast cancer de novo in August 2013, after experiencing back pain that she originally suspected to be a kidney infection. She is a graduate of the Living Beyond Breast Cancer’s Hear My Voice advocacy training and a public speaker. Susan has been meeting with lawmakers about legislation and bills that will positively impact the metastatic breast cancer community and bring Medical Aid in Dying laws to New York State. Currently, Susan is the President of METUP, a direct action advocacy organization founded by Beth Caldwell. METUP pushes to change the landscape of metastatic breast cancer by amplifying the need for improved healthcare access, research, and funding for metastatic disease.

Referenced in the Episode:

Metup.org

A 2694: Proposed Legislation in New York for  Medical Aid in Dying

San Antonio Breast Cancer Symposium

Find Susan online:

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Stickit2Stage4.com

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