Clinical Trial Update & Reflections on SABCS 2023

Hello, everyone! I know it’s been a bit since I’ve posted an update and I appreciate how many of you have reached out to check on me. As many of you are aware, I started a clinical trial that has required a great deal of adjustments to my schedule and that of my family. Combined with all of the preparation for, attendance at the 2023 San Antonio Breast Cancer Symposium (SABCS) and the upcoming holidays, I’ve found myself without the normal down time I count on to get a lot of things done.

So, I’m writing with an update today about all of that and the recent trip to the annual conference I’ve been attending since 2018 (with a brief break for COVID).

First of all, as you may be aware, I’ve encountered some pretty distressing challenges while participating in the vaccine clinical trial, which is my 6th line of treatment since my de novo Stage IV Metastatic Breast Cancer (MBC) diagnosis in 2017. The medication and the side effects haven’t been too difficult to adjust to; the challenges have primarily come about in dealing with the reality of many appointments and consistently accessing the medical system. After the second cycle and the post I wrote about how my family is affected by all the delays (Dominoes), I filed a formal complaint about all of the issues. Over the last few weeks, I’ve been working with several different people in leadership and there is a plan in place for this next week of appointments, my third cycle. I’m cautiously optimistic that my concerns were taken seriously and the proposed plan to address them is what I requested. More to come on this.

Secondly, as I mentioned, I attended the SABCS last week and wow, was it a whirlwind. From my arrival on Monday to leaving a bit early on Friday to facilitate the boys’ activities this past weekend, it was non-stop activity and very little rest or sleep. I had the opportunity to see and spend time with many dear friends, some of whom I was meeting in real life for the first time, which is truly the best part of attending these conferences. Thanks to the support of Dr. Stephanie Graff, the moderator of the panel I was asked to participate in, and the other panelists agreeing to give up some of their time to me, I was given the opportunity to speak directly to the attendees about the experience of making multiple treatment decisions as a terminal cancer patient. You can watch my talk here:

The slides from that presentation can be viewed below:

I am glad that I couldn’t see the audience well during my presentation as the lights prevented me from seeing much beyond the screens with all of the slides; from the pictures, it is clear that the room was packed with some attendees resorting to sitting on the floor when seats ran out. While there were quite a few other patients participating on panels and other presentations, not all of the moderators made space for patients the way Dr. Graff did for me. Thankful doesn’t begin to cover how grateful I am to experience how some walk the walk when it comes to involving patients.

That evening, while attending the Guiding Researchers and Patients to Scientific Partnerships (GRASP) annual reception, I was completely shocked to be presented with an award. Julia and Christine, the co-founders of GRASP are dear friends and colleagues in the MBC Community and for truly one of the first times I can remember, I was entirely speechless when they called me up to present me with the “Luminary of Change Award.” I am so grateful to know them and to get to do meaningful work with them.

The same day as the treatment decision discussion, I also had the opportunity to participate on a panel discussion for the Metastatic Breast Cancer Alliance, an organization I joined recently as an individual MBC patient advocate, all about the Inflation Reduction Act (IRA). The organization, Lumanity, was tasked with providing a representative to explain this complicated law to the membership and they have some helpful resources here. My role in the panel was to bring the patient perspective and, as the only MBC patient on the panel, assist the other patient members of the Alliance in understanding our role and why we need to take the implementation of the IRA seriously. More on this to come — it’s complicated.

And that was Tuesday …

On Wednesday, I worked some booth shifts for FORCE and SurvivingBreastCancer.org, spent as much time as possible with various dear friends, heard the FDA Breast Oncologists speak (arguably one of the best sessions that the Alamo Breast Cancer Foundation presents) and attended a special reception for the speakers at the conference. The American Association for Clinical Research (AACR) has recently taken a much larger role in the SABCS and many of the differences were felt in a variety of ways. We all appreciated the wellness area where one could get massages, pet a cat or a dog, among other ways to take breaks. Also debuting at the conference was childcare along with a really nice nursing room.

Thursday was also a chilly (for this Florida girl) and packed full of activity, including the first official announcement of a brand new patient-advocate led initiative, the PIK3CA Path Breakers. Dr. Neil Vasan introduced this initiative during his presentation on those efforts to target the PIK3CA mutation through treatment options. The slide he created, which includes QR codes to obtain more info is below:

As with so many other developments, more to come on this, lots more. Even though the conference hadn’t concluded, I flew home on Friday so that I could ensure the kiddos got to participate in their activities and had a full weekend (including a lovely, if brief, Christmas party with dear local friends) before heading up to Jacksonville to start the third cycle of the clinical trial.

I can’t conclude this post without drawing attention to the fact that while I was attending SABCS and returning home, there was a funeral of a dear local friend who died of MBC and I heard from two other friends that they were entering hospice. This sobering reality in the midst of all the learning and presenting and hobnobbing with friends drives home yet again that there is so much to do, that we need breakthroughs urgently, and that MBC means serious business. I’ve so much to ponder and, as we do about annually, Elliot and I will be planning next year’s goals and objectives.

Stay tuned …