Cancer clinical trials save lives, drive innovation, and improve the quality of care for future generations. But for patients and caregivers going through cancer, they can also be yet another frightening unknown. In recognition of Clinical Trials Day, we’re sharing stories of hope from our volunteers who have been through it.
Meet Kristin Kleinhofer, a CHN volunteer mentor since 2022. Based in Northern California, Kristin decided to take part in clinical trials not just for herself, but also to pay it forward.
*The opinions expressed in this blog are those of the author and do not necessarily reflect the views of Cancer Hope Network.*
Over the past several years, I have been blessed to work with several cancer nonprofit organizations, such as the Cancer Hope Network. I am very passionate about paying it forward through my patient advocacy efforts in sharing my message of HOPE, helping fellow cancer patients and caregivers as they navigate their journeys, and participating in the creation of educational materials. I have had the incredible opportunity to meet and be inspired by amazing researchers, scientists, and doctors who have dedicated their lives to seeking cures and saving lives.
My Cancer Journey
My own personal cancer journey began 14 years ago in 2010. A lump was discovered on top of my head with the assumption that it was a harmless cyst that needed to be removed. Much to everyone’s surprise, I was diagnosed with an aggressive blood cancer, Acute Lymphoblastic Leukemia.
The next two years were filled with many scans, bone marrow biopsies, lumber punctures, endless blood draws, blood transfusions, infections, viruses, and week-long stays in the hospital to receive inpatient chemotherapy. The treatment was successful, and it put me into remission for 1.5 years. It was during this time that I began to live life with so much more gratitude, met my life partner Benny, and began to do things off my bucket list.
Although it appeared the treatment had worked, I relapsed in 2014 once I discovered a swollen lymph node on my neck. Inpatient salvage chemotherapy was the next step, but the blood cancer continued to grow. It was during this time that I decided to choose a mantra to help carry me forward. It’s a quote by Christopher Reeve that says, “Once you Choose Hope, Anything is Possible”. The Hope is not that everything will go away like a fairytale, but the Hope is that I will find the strength to get through wherever my journey leads. Since I had run out of standard treatment options, I began to seek clinical trials. I was not only fighting for my life, but I also wanted to pay it forward by helping further cancer research so that I could help other cancer patients. I was fortunate that my oncologist informed me about a clinical trial taking place at a nearby academic medical center using various combination chemotherapies during a 4-week inpatient stay for adults with relapsed or refractory Acute Lymphoblastic Leukemia. I was interested and enrolled. The plan was to try to get into a remission so that I could proceed with a blood or marrow transplant. This treatment protocol did put me into temporary remission but wreaked havoc on my body with debilitating side effects.
But then the plan changed. We learned that the bone marrow donor found on the registry was no longer an option and my siblings were not a match either. It was also during this time that my medical team began to discuss CAR T-cell immunotherapy as a possible treatment option. We didn’t know what that was in 2014 as there wasn’t as much information as there is today. But my mom did the research, and we were excited as it made so much more sense using my own immune system to fight my cancer as clearly my body was building up a resistance to the chemotherapy and I was being left with toxic side effects.
I let my oncologist know I wanted to pursue it and she reached out to the three clinical trials that I was eligible for at that time. I was so fortunate to hear back from Fred Hutchinson Cancer Center in Seattle, WA. My mother and I flew from CA where we live to Seattle to meet with the principal investigator for the clinical trial. He informed us very well on the clinical trial discussing the benefits and risks, common side effects, and sharing success stories. Based on this information, I wanted to pursue so I was sent to have my white blood cells collected via apheresis. Afterwards, my cells were sent to the Fred Hutch lab where they were further filtered to extract the T cells, a type of white blood cell. They then genetically engineered the T-cells to recognize the target marker found in my type of cancer, grew them in the millions, and froze the T-cells for future use.
A couple of months later I enrolled as patient #13 in the CAR T-cell immunotherapy clinical trial. One month after the CAR T-cell infusion, no evidence of cancer was found. We were ecstatic and it was amazing how quickly I recovered compared to my previous treatments. Under the recommendation of my medical team, the next step was to enroll in another clinical trial at Fred Hutch using umbilical cord blood from two baby infants, a baby boy and a baby girl, for my bone marrow transplant as there was no match on the registry or within my family. In early 2015, I enrolled as patient #51 in the clinical trial and had a successful bone marrow transplant. I will never get to meet my two baby donors, so I have since named them baby Noah and baby Gabriella and I hold them close to my heart every day. I am forever grateful to the two mothers and two infants who gave me the gift of “life” through their donation.
Today, nine years later I remain in remission with no evidence of disease and am very passionate about paying it forward through my patient advocacy efforts.
Wisdom Gained
I want to share some wisdom that I’ve gained from my cancer journeys. How did I make it through the dark times?
- Choice on How we Want to Live Each and Every Day. We can’t control what happens to us, but we can control the way we respond to the challenges and the joys that each day brings.
- Take it Day by Day. Live in the Present.
- Gratitude for Life’s Blessings. Each day is a gift from another day of life. There’s always something to be thankful for, even if it’s just making it to the end of the day.
- Positive Attitude. This is a choice in a powerless situation. Your attitude really makes a significant difference and impacts the way you cope and those around you.
- Acceptance. It’s a journey of “letting go” of what once was and being open to where your new path leads.
- Knowledge is Power. It’s important to educate yourself on treatment options to make informed decisions. Be aware of the latest research. Seek second opinions. Be Proactive. Ask Questions. Advocate. The more you learn, the more in control you will feel.
- Develop a Close Partnership with your Medical Team. All are working together for your survivorship.
- Strong Support System. Stronger Together. For me, it was my family and friends. It’s important to surround yourself with love, support, and inspiration.
- Inner Strength and Resilience to push forward. My deep love for life helped me fight and endure.
- Faith and/or Spiritual Life. For me, a strong belief in the power of prayer. I was fortunate to have a village of supporters keeping me in their prayers.
- Humor. Cancer journeys are crazy, try to make the best of the situation and find times for laughter.
- Cancer Resources. Clinical trial navigators, support groups, 1:1 peer mentors, communities, and patient summits. There’s tremendous strength in finding others to connect with.
- Choosing Hope. Having the strength to endure and get through wherever your journey leads.
- Have a Bucket List: Destination/Activity. It’s important to have something to visualize and to look forward to.
- Find Stories of Hope & Inspiration. Know that you are not a statistic.
- Have a Mantra. Mantras helped me to carry forward.
The Path Forward
It’s an exciting time right now in the world of cancer research. Collaborations and partnerships are occurring to bring more treatments to cancer patients, by offering clinical trials and innovative therapies that are more targeted and offer hope when standard treatments have been exhausted or are no longer effective. Participation in clinical trials by patients, such as myself, helps to advance research. Clinical trials bring groundbreaking medical discoveries to the forefront and are changing the cancer treatment landscape. We now have more treatment options available to us than ever before, which is leading to increased survivorship and has brought us closer to finding a cure. Many are hopeful and confident that soon, a wide range of immunotherapies will be available as front-line treatments, reducing toxicities and improving the effectiveness of today’s standard treatments.
Educating patients on these new treatment options is crucial to support and advance research. I have personally been fortunate to have participated as an audience member, as a patient panelist, and as a key patient speaker at several cancer conferences. As I mentioned earlier, knowledge is power during cancer journeys and webinars/patient summits offer incredible opportunities to ask questions and to connect with others. Furthermore, access to free clinical trial navigators is available at various cancer organizations to help ascertain possible treatment options.
The pioneering treatments of immunotherapy and umbilical cord blood have afforded me the opportunity to still be here today. These treatments are saving and changing lives. I’m living proof of how far research has come, although we still have so much more to discover and perfect. I look forward to the day when cancer will NOT be a word that we are afraid of. No more harsh side effects, no more relapses, just our body’s immune system being led to harness its wisdom to conquer cancer through innovative cancer research and future discoveries.
I am profoundly grateful and want to thank the amazing researchers, scientists, and doctors who have dedicated their lives to the heroic pursuit of seeking a cure for cancer and improving the outcome of patients such as myself.
Are you or someone you know considering or currently participating in a clinical trial? Learn more about Cancer Hope Network’s Talking About Clinical Trials (TACT) Peer Mentors who are specially trained to share their experiences and to answer questions about the process of participating in a clinical trial.
About Cancer Hope Network
Cancer Hope Network provides free and confidential 1:1 peer support for cancer patients, survivors, and those who love them. Our trained survivor and caregiver volunteer mentors provide support from diagnosis, through treatment and into survivorship. They have faced more than 98% of the cancers that will be diagnosed in 2023, speak 15 languages, and are prepared to offer hope and guidance through a wide variety of challenges that accompany a cancer diagnosis.
All volunteer and client matches are overseen and supported from beginning to end by a team of healthcare and social work professionals. For more information about Cancer Hope Network and its mission, please visit https://cancerhopenetwork.org/
