Patients & Families
At Karyopharm, patients are at the core of everything we do. They inspire us, keep us motivated, and are critical in our pursuit of developing important new medicines. We are also committed to elevating and sharing the voice of patients. As real patients tell their stories, we are hopeful that their experiences can provide the patient and caregiver communities with inspiration, guidance, and a sense of familiarity as they navigate their own journeys.
Meet one of the amazing patients from a recent Karyopharm clinical trial.
Meet Adrienne: Knowledge is Power
No one ever thinks about what they stand for really, until you find your purpose. And I think having this cancer gave me one. Before endometrial cancer, I had never heard of it, and no one in my community had heard of it, so I felt it was my duty to speak up as an African-American woman and get involved in advocacy groups.Adrienne
Having overcame both ovarian and endometrial cancer, Adrienne is no stranger to educating herself on treatment options and preparing herself to have important conversations with her treatment team.
When Adrienne was first diagnosed with ovarian cancer, she felt there was a clear disconnect between cancer patients and their healthcare providers when it came to the how’s and why’s for not only treatment options, but the causes of her cancer. Adrienne knew that she needed to bridge this gap, and after beating her ovarian cancer she sought out to help others and speak on what it meant to be an advocate for yourself.
Adrienne is making a tremendous impact in the field of educating others on how to build effective communications between patients and healthcare professionals, and how to make sure patients go into a diagnosis prepared as they can be. Not only does Adrienne advocate for cancer patients but she has also partnered with the Georgia Ovarian Cancer Alliance and Survivors Teaching Students program to share her experience and story with gyn-oncology medical students.
Her advocacy efforts didn’t stop there. In 2018 Adrienne also became a community liaison and steering committee member with the advocacy group, Endometrial Cancer Action Network for African Americans (ECANA). ECANA is a community building space around endometrial cancer in African American women and it speaks directly to racial disparities in the disease, and hosts a website that supports the most immediate patient questions and the most common terminologies around cancer therapies.
Adrienne is also an endometrial cancer representative for the NRG Patient Advocate and Uterine cancer communities. Through this partnership, she has opportunities to participate in knowledge-based, co-learning activities that address health disparities and effective clinician/patient relationships to clarify the role of research while addressing misinformation that has negatively affected survival outcomes for women in marginalized communities.
Meet Chrissy: When life knocks you down, you get back up
You have to be involved and learn the language of your cancer. You can rely on the knowledge and information that your medical team gives you, but you still need to do more. You learn along the way.Chrissy
Chrissy describes herself as a regular ol’ gal, the type where her friends tell her she’s giving, kind, caring, strong, adventurous, and of course a little silly. Chrissy’s multiple myeloma diagnosis came as a complete shock to her. It hit her like a ton of bricks, she had never heard of this disease before.
Chrissy was diagnosed by a local oncologist, but knew she needed to find a specialist. Once she was able wrap her head around what was going on, she went online to research the disease, and found the International Myeloma Foundation (IMF). The IMF was able to connect Chrissy with amazing resources and a hematologist. Through the IMF Chrissy was able to see a highly recommended myeloma specialist and get a treatment plan and team in place within two weeks of her diagnosis. Chrissy voiced that it is necessary to have a local oncologist to work along with the specialist. Having a close oncologist to keep an eye on you and that communicates with your myeloma specialist is key. Chrissy shares “We are a big team. It really does take a village.”
Chrissy also strongly believes in order to get through your cancer journey you need to be your own advocate, you need to seek out the different treatment options that are available and educate yourself on what is out there, including seeing if you qualify for a clinical trial. She also highly recommends working with a myeloma specialist. She encourages others to find a new normal and figure out what works for them and their cancer. Having been an advocate for herself, Chrissy says, “you have to be involved and learn the language of your cancer. You can rely on the knowledge and information that your medical team gives you, but you still need to do more. You learn along the way.”
Chrissy has worked with myeloma specialists to help give the patient perspective to newly diagnosed myeloma patients. She shares her experiences with these new patients in hopes that they will find comfort and relatability as they navigate their own cancer journey.
The resilience Chrissy has shown over the past several years is incredibly powerful. She knows that on days where she gets knocked down, she needs to find new ways to get up and move forward.