“Chillin’ Out” and Finding Our Cancer Community

After nearly 30 years with cancer — community, research and education have helped us find hope, strength and purpose in the face of chronic blood cancers: © stock.adobe.com.

As a couple, we have been dealing with cancer for nearly 30 years. When Andrew was diagnosed with chronic lymphocytic leukemia (CLL) years ago, we had two small children, were running a growing patient education business, and we were terrified. At that time, we had no understanding of the difference between cancer was acute or chronic. We also had no knowledge of significant subtypes within a cancer diagnosis. There was a lot to learn. We needed to find information and communities to help us navigate our cancer journey.

Thanks to a computer-savvy neighbor (remember, this was 1996), we connected online with a long-time CLL survivor, "Granny Barb" Lackritz, who told us to "chill out!" and directed us to a major center of research and treatment that led Andrew to a phase 2 clinical trial and a 17-year remission.

We met other people in Seattle and online who were dealing with cancer too. As the years went by we came to understand the immense value of community — finding support among others facing the same fears, the same need to find answers, the same deep-seated longing for the best quality of life and more effective options for managing "chronic" cancer if a cure is not yet on the horizon.

Retreatment with a newer drug and now ongoing oral treatment for a second cancer allow us to live a full, active, and grateful life together.

Our big realization? Participating in research and helping provide funding is key to survival!

As cancer advocates and journalists, we also know that without ongoing, collaborative research, the hope for "What's Next?" would not be forthcoming. Now, with Andrew’s myelofibrosis progressing, what’s next could add years to his life.

We moved to San Diego almost 10 years ago to be close to the researchers and treatment experts for the two blood cancers we are dealing with. hat is a blessing. Then we found out that locally based Curebound, founded by a cancer survivor and his family, focuses on raising money to fund early-stage cancer research and it requires collaboration on research across academic institutions. This is where the pipeline of cancer treatment options begins and has been the start of a hopeful path for us.

With all the research advances, early studies can make a difference for patients across cancer subtypes. One recent example is a research team that was awarded a $200,000 Curebound grant at the San Diego School of Medicine, in California, in 2021. Led by Doctors. J. Silvio Gutkind, Joseph Califano, and Ezra Cohen, the goal was to investigate if initiating immunotherapy treatments before surgery may offer a next-generation treatment for head and neck cancer patients. Three years later, the research team has advanced the understanding of immunotherapy resistance, has been published in Cancer Cell and Nature Communications, received an additional $9.6 million in follow-on funding from the National Institutes of Health,and launched a multi-location clinical trial. Moreover, their research could lead to important discoveries about immunotherapy that could have broad impact on treatments for other types of cancers. All because a community came together and donated funds for cancer research.

We also appreciate that Curebound — the organization and its growing base of support — raises awareness within the general public of the need for funding early-stage cancer research. We have participated in major fundraising events and educational programs open to the public that are engaging not just for cancer patients, but for other communities touched by cancer who want to help.

Along with our devotion to the work Curebound does, we are working with college students who want to enter health-related fields by lecturing about ways to reach cancer communities through various communication channels and techniques. We emphasize the need for education about the importance of clinical trial participation and support of research. In addition, we sit on a variety of committees — driven by California State initiatives, pharmaceutical companies and regional medical research programs to bring the patient and care partner voices to the efforts.

For anyone dealing with a cancer diagnosis, we recommend taking a deep breath, learning more about your specific type of cancer — today there are fewer types of cancer where medicine has not yet figured out how to stall progression — and find your community to live your best life.

Having “chilled out!” and survived since that scary day in 1996 when Andrew was diagnosed, the communities we’ve found have become a wonderful channel for us to make a difference for others and certainly for ourselves.