ImmunoAdvocates Kristin Kleinhofer Leukemia Kristin’s Story Today, I’m cancer free and passionate about spreading hope and advocating for others. My family and I truly believe that immunotherapy helped to eradicate my cancer and is the reason why I am still in remission and here today! I was diagnosed with acute lymphoblastic leukemia (ALL) precursor B cells in August 2010, at the age of 36, after biopsy results came in from the removal of a head cyst found on the top right side of my head. It was a total shock to my family and me as I had no other physical symptoms. After a few days of being overwhelmed, I took action to unload my life, take leave from work, educate myself and fight my cancer. That was the beginning of my two-year journey of inpatient, intense chemotherapy that ultimately failed to keep me in remission. By February of 2014 the cancer was back and I decided that I was going to ‘choose hope.’ With the support of my mom and my partner, Benny, I began seeking clinical trial options. At the recommendation of my doctor, I enrolled in phase one clinical trial of chimeric antigen receptor T cell (CAR T) therapy, a technique in which my immune cells were extracted, altered and then re-infused into my bloodstream so that my own immune system could fight the cancer. I was one of the first patients to receive this therapy in an outpatient setting and was among the 93% of patients in my trial that achieved remission. I am so very grateful to my amazing medical team from Kaiser Permanente, Stanford Medical Center, and Fred Hutchinson Cancer Research Center that worked together in collaboration to help me fight my cancer. I truly believe immunotherapy is changing the cancer treatment landscape and I am excited for the future as they continue to advance its use to more types of cancer & continue to learn more. It’s an amazing medical breakthrough and I believe it’s our future in our fight against cancer! Questions and Answers How and when did you first learn you had cancer? In August 2010 at age 36, I was at work when I received the call from a doctor who informed me that the cyst growth that had been surgically removed from the top of my head a week earlier was Acute Lymphoblastic Leukemia (ALL). The doctor said they checked the biopsy results 3 times as they were shocked as it was a highly unusual representation as I had no other physical signs/symptoms. The doctor informed me that I had to leave work asap to go do ordered blood tests & that I was scheduled to meet with an Oncologist the next morning. During the oncology appointment, my world exploded as I learned about the two-year treatment protocol, quick need to unload my life, need for immediate long term leave from work and pet care due to long inpatient stays and high likelihood of being left infertile after treatments. I sought a second opinion, started educating myself & chose to fight the cancer! How did you learn about immunotherapy and why did you decide to do it? Salvage chemotherapy treatment after my relapse was not effective so my oncologist informed me of a clinical trial at a nearby cancer center using combination chemotherapy for relapsed/refractory adults of ALL. I enrolled in the 4 wk inpatient clinical trial. It was during this time that my oncologist mentioned CAR T cell immunotherapy as a treatment option. We had never heard that word before & didn’t know what it was. In 2014 there wasn’t much published information and my mom went home to research online. She found research info from Dr. Carl June at the University of Penn and she was so excited. She shared the information with me and it made so much sense using one’s own immune system to fight cancer as chemotherapy was no longer effective and left long term side effects. My doctors supported pursuit of this treatment and reached out to institutions with clinical trials, of which Fred Hutch took me. What was treatment like? Did you have any side effects? My mother and I met with the principal investigator for the clinical trial so were well informed in advance of the risks/benefits & I chose to enroll. I donated my WBC via apheresis over 4 hours. The cells were taken to lab, engineered with receptors to recognize CD19 marker and grown in the millions prior to receiving them. On Nov 19, 2014, I received my engineered CAR T cells via infusion in a 1hr outpatient setting with my mother and partner by my side. We were wearing our Choose Hope t-shirts & excitement filled the room. Later that night I was admitted for high fever as a reaction. On the 4th day after infusion, I experienced the much anticipated cytokine release syndrome, which is an inflammatory response. I was hospitalized for 5 days while I experienced high fevers, body chills, muscle aches, night sweats, low blood pressure, and slight mental fogginess. I was then released to outpatient monitoring for a month. How did immunotherapy compare to other treatments you may have received, if any? One week after my hospitalization from cytokine release syndrome, I was able to visit some Seattle sites such as the Space Needle & Ferris Wheel. This is unheard of with any of the standard chemotherapy regimens I’ve had. One month after my CAR T cell infusion, a bone marrow biopsy was done and no evidence of cancer was found. My family and I were elated. It is truly miraculous that in a short period of time, resistant cancer cells can dissipate after battling so long under standard regimens. One month after my CAR T cell infusion, I felt that I could easily reengage in life and have the energy level I once had. This is again not my experience with standard chemo protocols. I would easily do immunotherapy treatment again if needed in the future. The initial side effects were minimal as compared to all I’ve endured. There aren’t any long-term side effects which is unlike standard protocols too. Are there things that surprise you about the cancer experience? It’s amazing how quickly cancer cells can be killed/eliminated using one’s own immune system with no or very low toxicity vs standard chemotherapy protocols. It’s astonishing how fast one rebounds physically after undergoing CAR T cell treatment. One week after my infusion, I did some local sightseeing. This is unheard of after standard chemotherapy protocols that leave many physical side effects/damage, often long lasting ones. Truly 1-2 months after receiving CAR T cell treatment, I felt that one would be able to resume their regular home/work routine. Recovery is so quick and given my own personal experience, I would do it over and over again if I could vs standard chemotherapy protocols. There is a dramatic difference between standard chemo trtmts & immunotherapy. Immunotherapy offers “Hope” for so many of us patients that have exhausted all options. It’s giving many the gift of time! What would you want another patient to know about immunotherapy or about participating in a clinical trial? It’s important for patients to educate themselves on clinical trials & immunotherapy options in which they may qualify. It’s important to weigh the risk/benefit of pursuing the treatment & ensuring eligibility requirements are reviewed/met. Seeking a second opinion at a cancer center or academic medical institution can be very informative/offer options. Creating a close partnership with your medical team is crucial in ensuring that your wishes are included in treatment decisions made. Take advantage of cancer resources/orgs such as clinical trial navigators to support your goal. For me, pursuing clinical trials offered HOPE and that this new CAR Tcell immunotherapy treatment would give me a gift of more time. It afforded me the opportunity to continue fighting my cancer and to help further research in helping future cancer patients. Breakthrough new medical advances occur in clinical trials!
