This is the first of a series of blogs covering the 58th ASH Annual Meeting and Exposition in San Diego (#ASH16) conference over the next few days. Check back for more news from the meeting.
Harnessing a patient’s immune system to fight cancer is a hot topic. So hot, in fact, that today’s Leukemia & Lymphoma Society (LLS) satellite symposium on the topic preceding the 58th ASH Annual Meeting and Exposition in San Diego (#ASH16) was at capacity with more than 600 attendees.
The LLS-hosted event, “Immunotherapy: Transformation of Therapies for Blood Cancers,” was among several symposia taking place in advance of the annual meeting. More than 20,000 hematologists, patient advocacy groups and representatives from the biopharmaceutical industry will come together over the next few days to share their latest clinical trial data in blood cancers and other disorders of the blood.
The eager audience was here today with good reason – the symposium panelists included some of the most world-renowned experts in the rapidly advancing field of immunotherapy. Researchers are investigating an array of approaches to employ the body’s immune system to kill cancer cells.
LLS President and CEO Louis J. DeGennaro shares his optimism about LLS’s role and promise for patients.
As ironic as it may sound, I look forward to a day when we can put this organization out of business. My hope is that one day, all the effort we put forth at The Leukemia & Lymphoma Society (LLS) brings an end to blood cancers. We are at a unique moment in our history. New technology is bringing us deeper understanding of the causes of cancer, and new therapies are helping to bring us closer to our goal of a world without blood cancers. We have much to look forward to and much work to do in 2017.
Immunotherapy
Progress continues in this new medical frontier, and LLS-funded researchers are on the forefront of efforts to harness the immune system to fight cancer. We have seen dramatic success for patients with acute lymphoblastic leukemia and chronic lymphocytic leukemia with an immunotherapy treatment called CAR-T, where a patient’s immune T-cells are genetically reprogrammed to recognize and attack cancer cells. We have supported work in this area for more than 15 years, at University of Pennsylvania and other institutions. Kite Pharma, a partner in our Therapy Acceleration Program (TAP), announced important results of a clinical trial in CAR-T this fall. Kite is moving closer to seeking FDA approval of this therapy for patients with lymphoma in the coming year.
Precision Medicine
The goal of Vice President Joe Biden’s Moonshot to Cure Cancer is to achieve a decade's worth of progress against cancer in five years. LLS announced a significant commitment to this goal, by going on the offensive against one of the most deadly cancers – acute myeloid leukemia (AML). In October, we launched our groundbreaking Beat AML Master Trial, an unprecedented collaborative clinical study aimed at advancing precisely targeted treatments for patients who desperately need new and better outcomes. We expect to begin enrolling and treating newly diagnosed AML patients with investigational targeted therapies by the end of this year.
More Hope for AML Patients
In addition to the Beat AML Master Trial, we shared additional encouraging news for patients earlier this year. Another TAP partner, Celator Pharmaceuticals (recently acquired by Jazz Pharmaceuticals), announced promising results from a Phase 3 trial supported by LLS for its drug, CPX-351, for high-risk AML patients. Jazz plans to seek FDA approval in the coming year. If approved, this development, as well as the previously mentioned Kite milestone, would mark the first time that LLS’s direct investment in biotechnology companies resulted in helping bring new therapies to patients, a significant achievement for LLS’s venture philanthropy initiative.
Helping Patients Find Clinical Trials
LLS is particularly committed to helping patients enroll in clinical trials. We have enhanced our Information Resource Center (IRC) clinical trial navigation service to help more patients learn about and enroll in clinical trials. This enhanced support will allow our specialists to conduct an in-depth assessment of each patient’s medical history and current status to determine which clinical trials would be suitable for them. Our IRC is truly unique in the breadth of services we provide to blood cancer patients, families and caregivers.
Bringing the Patient’s Voice Forward
LLS continues to ensure that patients’ voices are heard, through our policy, advocacy and access work. We are currently conducting a survey focused on understanding what AML patients and their caregivers want from their treatments. The results of this study will be shared with the FDA, drug companies and academic researchers to help guide drug development for AML.
Commitment to Leading Edge Research
LLS has committed $40.3 million in new research investment this year – including 75 new academic grants in LLS’s research portfolio of 300 projects worldwide. Through this investment, LLS will continue to advance more breakthrough therapies and help save more lives, until its mission is complete.
Let’s work together to build on our successes in 2017 as we continue to strive for a world without blood cancers.
On April 8, 2016, I was diagnosed with acute promyelocytic leukemia (APL), a subtype of acute myeloid leukemia (AML). I was 23 weeks pregnant. For almost five years, my husband, Allan, and I battled unexplained infertility. After three failed fertility treatments, we finally found ourselves pregnant the “au natural” way!
At 18 weeks, I was diagnosed with a liver disorder and went for frequent blood work to ensure my liver was responding to the treatment. One of these blood tests revealed that I was severely anemic and my white blood cell counts were off. My perinatologist (an obstetrician who focuses on high-risk pregnancies), referred me to a hematologist to take a closer look, but the doctor’s next available appointment was not for another month.
A few weeks later, I woke up with a fever, aches, chills, cough, and a racing heart. I was rushed to the hospital where I was under 24-hour observation followed by an emergency appointment with the hematologist. After reviewing my lab report, his eyes widened. He said it could be a number of things, but that I needed a bone marrow biopsy.
I was immediately re-admitted to the hospital for the biopsy. They told us it would take a week to get the full results so I just assumed they would simply give me a blood transfusion to increase my numbers, control my fever and observe me for a day or so. Then, let me go home.
Just a few hours after the biopsy, around 9:30 pm, the doctor came in to break the news to us: “I am so sorry to be the one to tell you, but you have leukemia.” We were stunned and shocked. We were not expecting that one at all.
Our doctors stayed with us until 1:00 am explaining my diagnosis and answering our questions. My treatment started as soon as they left the room – all-trans retinoic acid (ATRA) and idarubicin.
I was doing quite well until April 21. Before bed, I was having trouble talking without coughing and every time I tried falling asleep I would wake up gasping for air. I woke up Allan around 11:30 pm to get the nurse – the next six hours everything changed.
Just as the nurses were rushing me down to the ICU, I started coughing up a lot of blood. The following hours are blurry. The next thing I remember is an anesthesiologist, OB/GYN, and a whole team of labor and delivery nurses showed up and started setting up my room with an incubator and surgical equipment. I was going through respiratory failure and was crashing. They were standing by to do an emergency C-section.
Miraculously, my daughter remained safely in my womb. I spent the next week in ICU, and a total of a month and a half in the hospital so they could observe my daughter closely. I went through two rounds of treatment while pregnant. Then, I took a short break from treatments to prepare for the arrival of my daughter.
On July 12, I gave birth to my beautiful, perfectly healthy daughter. Seeing her sweet face for the first time made the previous three months seem like an eternity ago. Having cancer while pregnant is rare, but a rare cancer and pregnancy is like getting struck by lightning twice. The doctors were not sure what to expect. We continue to be a case study as they track our progress. To be proactive, we take my daughter for a heart sonogram every couple of months. She remains in perfectly great health. I am so blessed.
In August, I began maintenance treatment again. Now I am on ATRA and arsenic trioxide (ATO), which leaves me tired and dries out my skin. Treatment is every day, Monday through Friday – one month on, one month off until February 2017.
It’s so difficult to leave my newborn every day while I go to treatment but I know the end is in sight. My faith as well as the support I have received from family, friends, and reading the stories of other survivors on the LLS website, has kept me going.
The stories of other survivors and loved ones have been a source of inspiration and comfort. I am a firm believer that our stories serve a greater purpose.
That’s why I participated in the the Fort Lauderdale Light The Night Walk on November 14 with my family, supporters, nurses and oncologists. It was incredibly inspiring to see the masses out there in support of raising awareness and funds for blood cancer research.
During the walk, every light represents a story to be told – red lanterns for supporters, gold for those we lost, and white lanterns for survivors, like me.
I believe everything happens for a reason. If my daughter was born four and a half years ago, when we started trying to get pregnant, I may not have been diagnosed until it was too late. My daughter came at just the right time to save my life.
Julianna lives in Fort Lauderdale with her husband, Allan, and beautiful daughter, Alianna.
