MetARP 2024: Kirstin and Angelica
MetARP
Advocate: Kirstin J Spencer
The MRS Advocate Researcher Program (MetARP) is an inspired platform introducing researchers and advocates in person to begin building relationships that may improve cancer research.
The program was a vision of Theresa, herself a metastatic breast cancer patient who, with her son Josh set up Theresa’s research foundation (Theresasresearch.org). Theresa was aware of the critical challenges facing patients with metastatic breast cancer such as a lack funding and specific research. Her foundation focuses on funding research, encouraging collaboration, supporting clinical trials, providing more resources for patients and especially poignant to me, improving access to care.
One of the huge disappointments for me having hormone positive (ER+) breast cancer is that I was told it was treatable. As it happens, this is not always the case at all. I saw my ER/PR 100% primary breast become metastatic and at point of metastatic diagnosis, slightly
change to become ER+ 80% PR+ 0% and then despite being treated with both an Aromatase inhibitor (Letrozole) and a very poorly tolerated CDK 4/6 inhibitor (Palbocicilb), after an initial complete decimation of my disease (mostly thanks to Letrozole I believe), I went on for the disease to progress within 9 months. At my point of metastatic progression my oestrogen bounced back up to 100% again and progesterone to 80%. This I knew, was bad news suggestive of an ESR1 mutation giving me resistance to many anti hormone drugs offered to control the disease.. Following a biopsy I discovered (but was not surprised) there was more bad news. I did indeed have a particularly difficult ESR1 mutation (Y537S, the second most popular one) but in addition, a PIK3CA mutation (E545K) was found.
This explained my disease progression, not mysterious at all - but now I had the issue of whether I would be able to access targeted treatment for it.
Would the targeted treatment work?
Metastatic cancer patients so desperately need better drugs to be discovered - it is difficult to know sometimes what is doing the more damage, the cancer or the drugs. I look around and see that many drugs offered don’t even prolong someone’s overall survival, bit seem to slow progression for a while - then the cancer works around the drug to become even more prolific and continues with a renewed energy.
I am a committed volunteer to the UK based metastatic breast cancer Charity METUP UK (metupuk.org.uk). I also volunteer for the American charities; Lobular Breast Cancer Alliance (LBCA.org ), Metavivor (metavivor.org) and Grasp (graspocancer.org). These amazing charities gave me access to a wealth of knowledge and connections from experienced advocates and scientists based overseas. I began to see patients living longer than expected who were able to access trials and medication combinations not available to us in Europe.
Wonderful in terms of science, tough for me on a personal basis. I had already asked to be swapped to another CDK 4/6 inhibitor Verzenios as I thought the toxicity profile would enable met at least take it and for radiotherapy. Both were denied to me by the NHS where I live - apparently there is a 6 month rule that means you could not swap from one CDK to another. However, in some hospitals (including my own eight months later) I was learning that some U.K. breast cancer patients were able to access Verzenios with Fulvestrant as second line. So, I guess I was just unlucky. Should it really come down to luck though?
Something else I have learned is that when someone tells you ‘there is no evidence’ it does not necessarily mean something is not true or possible, it just means that there is not a peer reviewed paper about it. Therefore much of the real world data that I am part of and I see happening in America is dismissed as insignificant which is why MetARP providing a forum for advocates and researchers to be paired and work together is so precious.
Before the MetARP conference, I was excited to find out I was paired up with Dr Angélica Santiago-Gomez who was an excellent researcher specialising in dormancy of Metastatic breast cancer. We initially had a call and were immediately chatting away for well over an hour!
We met in person at the Metastatic Cancer Conference in the Crick Institute, London between the 22-26 June, 2024 and speaking to Angélica, a vibrant, exciting researcher was inspiring. The conference saw me spending a lot of time learning about all the research going on during the sessions. The science presented in sessions, discussed over meals, and during the poster session highlighted to me what a conundrum the metabolic diseases coming under the term of ’cancer’ really are.
I only have a Bachelor of Science myself but over the years subsequent to my breast cancer diagnosis I have spent hundreds, probably thousands of hours scrutinising research papers and trial data and listening to other patients so am very comfortable and enjoy the company of these amazing scientists, researchers and Doctors. Ingenious minds set out to slow or kill the disease but are often confounded with our bodies own complex communication processes. The cancer seamlessly integrates and interweaves within the body homeostasis and tirelessly recruits its neighbouring community to help it to survive.
There is no evil intent, no war, just a universal need expressed in a multitude of ways and with various results for these diseases called cancer to survive. Their goal is to control their environment and our efforts to stop it are precariously balanced with maintaining some quality of life and protecting what we can of our bodily functions for as long as possible.
Undaunted, these scientists bravely continue their work, learning more and more all the time. Many of them have been touched by the tragedy that the disease can invoke amongst their families and friends. I know that Dr Angélica Santiago-Gomez has experienced the loss of her much loved grandmother due to the disease. Angélica explained to me her novel way of looking at controlling the disease by looking at inducing cell dormancy working with the NOTCH signalling pathway. This was something entirely new to me and very exciting.
The long-term goal of Theresa and her son, Josh’s MetARP is to establish patient-researcher relationships that last, allowing the advocates and researchers to work together to improve cancer research focused on metastatic disease.
It was a very special experience. Metastatic cancer patients so desperately need to be heard. I could not have imagined or believed, had I not experienced it, the complexity of issues us patients face. This is not just at diagnosis but subsequently to access care and medication as we try to live for as long as possible.
Many of us have similar issues - my only child, a daughter is at primary school. The guilt I feel not having a sister or brother for her and knowing that my survival is unlikely to see her through secondary school is tough. My length of survival will ultimately depend on my ability to access timely treatments for my specific disease and profile. That is another whole challenge though.
I thank the wonderful people at MetARP who supported us advocates; Hillary Andrews, Dr Angélica Santiago-Gomez and of course Theresa and Josh. Their amazing support, gives us light and essential hope. It is the unending golden thread of hope that they enable to be woven through the fabric of research that may comfort us all in the darker times.
Researcher: Dr Angélica Santiago-Gómez
Since I was an undergraduate student, I have been fascinated by the molecular mechanisms of cancer. I knew very early on that I wanted to dedicate my career to cancer research. Witnessing the struggle and uncertainty caused by cancer within my own family has fuelled my determination to make a meaningful impact on those living with the disease. My curiosity and personal motivation led me to focus my postdoctoral studies on translational and clinical breast cancer research, by joining the lab of Professor Rob Clarke at the University of Manchester (UK). Initially, I delved into the mechanisms of endocrine resistance in Estrogen Receptor-positive (ER+) breast cancer, but I rapidly became interested in developing better animal models to study breast cancer metastatic disease. I was, and still am, intrigued about the dormant phase of metastasis.
I have always been passionate about patient and public engagement, and this feeling intensified throughout my postdoc years. Now that I am based at the Spanish National Centre for Oncology (CNIO), I could not miss the opportunity to work with patient advocates!
I am so thankful to the Theresa’s Research Foundation for selecting me to initiate the MetARP program at the MRS 20th Biennial Congress in London. In fact, it all started few weeks earlier, when I was paired with my MetARP partner, Kirstin Spencer. A UK-based patient advocate who is not afraid to speak up and give voice to all those who cannot, pushing forward for fair access to novel life-saving treatments while juggling it all with her medical appointments, her family life, and her beautiful horse. We met over Zoom, and immediately got along! It was really inspiring to listen to her personal experience and to share my research interests and thoughts about metastatic breast cancer. We even spoke about how cancer cells can outsmart our system, and I told her about how we need to know more to stop them, as this ends up being an evolutionary arms race, similar to that between a predator and a prey – we just need more armaments (knowledge-targets-therapies triad) to keep them in line! Truth be told, we could chat for hours!
If the Zoom call was inspiring, meeting Kirstin, and the other patient advocates, in person at the MRS 20th Biennial Congress was fascinating. It really added an invaluable perspective to my experience: from sharing my research with them, having their support during my talk and poster presentations, commenting on sessions during lunch breaks and the social event to introducing them to other scientists. Furthermore, I would like to highlight how truly remarkable and inspiring is to witness their dedication and impact on influencing cancer policy and drug access. Kirstin is working hard in national and international committees and advisory boards ensuring that drug development and approval processes are transparent, inclusive, and aligned with patient needs. I believe our MetARP match is just the beginning of an advocate-researcher relationship that will improve cancer research!!!
