Marlee’s story of courage, inspiration and giving back.
Marlee’s story of courage, inspiration and giving back.
My name is Marlee Pincus and I have cancer. I never in a million years thought I would say those words. Growing up, I never had any medical issues nor a significant family history of cancer. In high school I loved to run, advocate for human rights, and learn Spanish. However, my greatest focus was always on my academics. I graduated Salutatorian of my class and was eager to begin my freshman year at Cornell University.
The first three and a half weeks were absolutely amazing. I was meeting so many interesting people, learning new things, eating unhealthy foods, and staying up very late; you know, typical college stuff. After a few weeks, my friends and I caught the cough going around the dorm building. As my friends recovered, my symptoms worsened. I was developing fever, night sweats, extreme fatigue, shortness of breath etc. I attributed these feelings to the “college lifestyle.” I wasn’t planning to come home for Columbus Day weekend, but decided to for a reset. When I woke up the next morning, my mom noticed I was extremely pale and decided to take me to urgent care. They drew blood and then received a “critical values” call from the lab. I was rushed to Hackensack Hospital in New Jersey, where my aunt is a pediatric endocrinologist. After more blood tests the doctor confirmed that I had T-cell acute lymphoblastic leukemia.
Igniting my Fire
Hearing you have cancer is one of the scariest feelings. Your first thought is, “Am I going to die?” The doctor explained to me that my cancer is very treatable, but recovery takes more than two years. My whole world was flipped upside down. Here I was, not even 18 yet, always had been healthy, and thriving at college. Now that was all taken away. It felt like the ground was crumbling beneath me and I couldn’t do anything about it.
After a few days of shock, breaking the news to friends and family, and lots of tears, I was ready to fight. It’s hard to describe the feeling, but when faced with a life-threatening situation, an inner strength comes over you. I describe it best as a fire ignited within you. The fuel was always there, but there was no spark to light it. From there, you have a shift in mindset. The future from moment to moment is so unknown. Thus, you learn to be mindful of the current situation and accept things as they come. Having a positive attitude is essential. During this process, your body undergoes severe strain and adding anxiety makes your body work even harder. This is not to say that that I don’t have my moments. There are times I feel angry and upset. I wonder why I was struck with this and how my life could just be put on total pause. I always remind myself through, that regardless of why, this is my current situation. The only thing I can control is my mentality. I focus much of my energy understanding the treatment and observing new things about the world. When you open up your mind, you will be surprised by the things you learn and notice.
18 Means More than a Number
While in the hospital, I had my 18th birthday. I never thought I’d be shaving my head on my birthday, but I wanted to make it memorable. Losing my hair didn’t scare me. I knew I couldn’t watch it fall out and I wanted to take the opportunity to try new hairstyles along the way. Hair grows back. Hair does not define me.
Since my diagnosis was so close to my birthday, people kept asking what I wanted. However, besides health, there was nothing I needed. I decided instead to start a Facebook fundraiser for The Leukemia & Lymphoma Society. In the Jewish religion, the number 18 is called “chai” and it means “life”. Since I was turning 18 on October 18th 2018, I decided to ask for donations in multiples of 18. My goal was to raise $1,800 in 18 days. However, support from all over kept rolling in and in 18 days, I raised over $18,000 dollars! It was amazing to see so many people come together to support not only me, but this wonderful organization.
Finding a Greater Purpose
The fundraiser was able to reach many people because I posted on the Facebook page,facebook.com/marleeindira that my dad and I made. Here, I give updates on my condition and write personal stories. Before the fundraiser was posted, hundreds of people followed my progress. Therefore, when I posted the fundraiser, people were eager to contribute. In these situations those around you often feel helpless because they can’t do anything to fix the situation. Thus, channeling energy into donations is an easy way for anyone to help out.
Today, I continue to receive treatment at Memorial Sloane Kettering Cancer Center. I am roughly 8 weeks into treatment. It’s going to be a long road ahead, but I am determined. Of course bumps are inevitable, but with a positive attitude and a wonderful support system, I can fight this cancer. My parents and grandparents are always right by my side and nearly 500 people track my status through the Facebook. Having people rooting for you is an amazing feeling and gives you the drive to push through. Although I never thought I would be here, I am willing to take this opportunity to self-explore and gain a new perspective on life. This is something I can carry with me forever.
Your donations matter and save lives! See how you will be able to easily create your own Facebook fundraiser supporting The Leukemia & Lymphoma Society.
On Sunday, I reported on a press briefing at the 60th ASH Annual Meeting where the preliminary findings of our Beat AML Master Clinical Trial were unveiled. This innovative collaborative study is designed to bring the hope of precision medicine to patients with acute myeloid leukemia (AML). (Read about our Friday ASH satellite symposium on immunotherapy here).
On Monday, Amy Burd, Ph.D., LLS’s vice president of research strategy and lead on the study, presented the findings again; this time to more than 2,000 world-class scientists.
The Beat AML Master Clinical Trial is using genomic technology to identify the patient’s type of AML so they can get a targeted therapy to treat their disease. The study has been open for two years and is now enrolling patients in 11 different study arms at 13 centers. To the question: Can we assign patients to therapy within seven calendar days of samples arriving at the processing lab? Burd's emphatic response: "The answer is yes! We’ve achieved our primary endpoint of assigning therapy within seven days to over 95% of the patients."
We also learned on Monday that Burd’s Beat AML abstract, along with the abstract regarding the Beat AML study arm for the IDH2 inhibitor enasidenib, by Eytan Stein, M.D., of Memorial Sloan Kettering Cancer Center, will be showcased in today’s “Best of ASH” session, which features studies the committee has deemed to be among the most important breakthroughs presented during the ASH conference. Cleary, this is a significant honor for LLS; Best of ASH data are presented throughout the year at ASH satellite meetings around the country. The studies will also be featured in a “Highlights of ASH” publication.
Burd’s presentation yesterday kicked off an early morning scientific session focused on trials of novel therapies in AML that work by interfering with the genetic mutations that drive the cancer cells.
It’s been a whirlwind two years for AML therapies, with nine approved since the start of 2017.
Some of these newly approved agents were in the spotlight at Monday morning’s session, including ivosidenib and enasidenib, two therapies that target the mutations IDH1 and IDH2, respectively; gilteritinib, a new drug that just received FDA approval on Nov. 28, targets the FLT3 mutation in AML; and venetoclax, a drug that helps rid the body of damaged cells and received FDA approval on Nov. 21 to treat elderly AML patients (it had previously been approved for chronic lymphocytic leukemia). Quizatinib, another FLT3 inhibitor that is under FDA review with a decision anticipated later this year, was also discussed.
Overall, response rates for these new therapies, both as monotherapies and in combination with standard chemotherapy, have been encouraging, giving doctors and their patients many new options and new reason for hope when given an AML diagnosis.
Three of these therapies are also being tested in the Beat AML study as first-line therapy: ivosidenib, enasidenib and gilteritinib, though the data presented at this session were from different studies.
Combinations are Key
Over the past two years, the FDA has approved 37 therapies to treat blood cancers. Some of these are entirely new agents, while other approvals are for new indications of previously approved treatments or new dosing regiments. With so many new therapies in the toolbox, clinicians and scientists are now trying to figure out the right cocktails of treatments.
Multiple studies presented these past few days addressed this puzzle: What is the right combination of these therapies to optimize outcomes for the patient? Doctors are also trying to understand why some patients respond while others are resistant to treatment. Are there biomarkers to give us clues about who will respond and who won’t?
Two therapies that came up frequently in studies of different combinations, were the aforementioned venetoclax, and ibrutinib, a drug that targets a protein called Bruton’s tyrosine kinase (BTK), which plays a role in cell growth and when its levels are too high, allows for proliferation of cancer cells.
Ibrutinib is currently approved for chronic lymphocytic leukemia, Waldenstrom’s macroglobulinemia and mantle cell lymphoma.
The Leukemia & Lymphoma Society (LLS) has played a significant role in supporting research over many years for both of these game changing therapies. As with other blood cancer therapies, both venetoclax and ibrutinib might have applications in solid tumor cancers, and clinical trials are underway in breast, pancreatic and prostate cancers. Both are already changing the standard of care for multiple blood cancers.
The most compelling results are when these two drugs are being tested together to improve treatment for CLL. The results of one study show that in many cases the cancer was completely eradicated, leaving no trace of cancer cells, known as minimal residual disease. Venetoclax is also being tested in multiple myeloma combined with antibody drugs. Its recent approval in AML was in combination with different types of chemotherapy.
Plenty at the Plenary
One of the highlights of ASH is the Plenary Session: studies selected for this event are considered “practice changing” and the presentations are held in the largest halls, allowing for many of the thousands attending the meeting to hear about the most impactful findings.
There is a growing trend in cancer to move away from toxic chemotherapy toward targeted and immunotherapy treatments. One of the presentations, given by Jennifer Woyach, M.D., of The Ohio State University, showed that ibrutinib is truly a game changer in treating CLL. Her team’s study shows that ibrutinib, either alone, or in combination with the antibody rituximab, is far superior to the current standard of care for CLL, which is a combination of the chemotherapy bendamustine, with rituximab. In fact, the study arms with ibrutinib alone performed equally to the study arm with ibrutinib and rituximab, hinting that rituximab might not even be necessary in this regimen.
“This study represents part of a paradigm shift away from chemoimmunotherapy toward targeted therapy for most older patients,” Woyach said.
Another Plenary presentation showed work supported by LLS through our Translational Research Program in which the gene editing tool, CRISPR, was employed to identify the molecular aberrations that cause a rare and particularly aggressive type of leukemia called acute erythroid leukemia (AEL). The study identified age-related AEL subtypes and the team is now testing these genetically defined subtypes of AEL for their sensitivity to different targeted drugs.
And here is a compelling reminder that ASH is about more than the blood cancers: the organization is also focused on other blood diseases including hemophilia and sickle cell disease. One of the most moving sessions of the ASH conference was a Plenary presentation by Leon Tshilolo, M.D. Ph.D., Sickle Cell Director in Kinshasa, Democratic Republic of Congo. The highest percentage of children suffering from the painful sickle cell disease are in sub-Saharan Africa. Tshilolo's team studied the impact of giving children hydroxyurea, a standard treatment for the disease but one that had never been studied prospectively in this patient population, where challenges such as malnutrition and infections are a factor. The results show that if these children could have access they would clearly benefit from daily treatment with this oral therapy.
A few other quick updates:
• On Monday, more data was presented on chimeric antigen receptor (CAR) T-cell therapies for multiple myeloma. The target for these engineered T-cells is a protein on the myeloma cell surface called BCMA (b-cell maturation antigen) and multiple biopharmaceutical companies are vying in this space including Janssen, Juno, Bluebird and Celgene. Several of the studies showed strong response rates, in the 80 percent range, but more time is needed to determine its durability.
• Stemline, a company LLS supports through our Therapy Acceleration Program, presented compelling data for its therapy tagraxofusp/SL-401 (Elzonris™) to treat a rare but challenging blood cancer called blastic plasmacytoid dendritic cell neoplasm (BPDCN) that presents with skin lesions. Stemline’s study showed an overwhelming overall response rate of 90%, and the therapy is currently under FDA review.
Recognizing Greatness
Finally, I’d just like to acknowledge two friends of LLS who received special recognition at this ASH meeting, for their impact on the cancer landscape:
Ross Levine, M.D., of Memorial Sloan Kettering Cancer Center, received the prestigious William Dameshek Prize, named for a past president of ASH. Levine is a co-lead of LLS’s Beat AML Master Clinical Trial. The Dameshek Prize is awarded to an early to mid-career hematologist who has made a recent outstanding contribution to the field of hematology. Levine has helped define the role of genetic mutations that play a role in AML and myeloproliferative neoplasms.
Ann Farrell, M.D., director of the Division of Hematology Products at the FDA, and one of the panelists at our roundtable Thursday night, was given the 2018 ASH Outstanding Service Award, an honor recognizing her leadership in advancing partnership between FDA and ASH. Farrell has been a guiding force and a strong advocate for our Beat AML Master Clinical Trial, and has provided invaluable input on our protocol.
Ross Levine, M.D., of Memorial Sloan Kettering Cancer Center, received the prestigious William Dameshek Prize, named for a past president of ASH.
Ann Farrell, M.D., director of the Division of Hematology Products at the FDA, was given the 2018 ASH Outstanding Service Award.
Burlington Stores and The Leukemia & Lymphoma Society (LLS) joined forces for the 17th consecutive year to help save lives and bring smiles to those touched by blood cancer. From September 9 through December 1, Burlington’s more than 670 locations nationwide encouraged customers to donate $1 or more at checkout to support LLS’s goal to create a world without blood cancer. This campaign, combined with Burlington’s corporate associate fundraising efforts, raised a record smashing $5.1 million for LLS, helping the organization fund lifesaving research and treatments. This year’s donation is the largest one by the retailer to date, and over the past 17 years, Burlington has raised a collective grand total of more than $37 million.
New this year, Burlington and LLS’s 56 chapters nationwide brought smiles to nearly 100 young blood cancer survivors by surprising them with a shopping experience at their local Burlington store, ensuring that they felt confident and could showcase their personal style.
Burlington and their customers have every reason to be proud of what their contributions have accomplished, bringing new therapies to patients and advancing cancer research and treatments in areas previously thought impossible. Since 2017, the U.S. Food and Drug Administration (FDA) has approved 37 blood cancer treatments to date, and LLS has helped to advance 31 of these at some point in their development. These revolutionary new treatments are powering efforts to attack cancer from every angle.
Because of the generosity of Burlington, the top Light The Night national partner, thousands of lives have been saved, and the work that LLS is doing to fight blood cancers not only is advancing lifesaving treatments and cures for the 1.3 million Americans living with or in remission from a blood cancer but as importantly, it is helping patients with other cancers.
Congratulations to all the Burlington associates in the 670 stores across the United States and in Puerto Rico, and all of their generous customers!
After a few days of shock, breaking the news to friends and family, and lots of tears, I was ready to fight. It’s hard to describe the feeling, but when faced with a life-threatening situation, an inner strength comes over you. I describe it best as a fire ignited within you. The fuel was always there, but there was no spark to light it. From there, you have a shift in mindset. The future from moment to moment is so unknown. Thus, you learn to be mindful of the current situation and accept things as they come. Having a positive attitude is essential. During this process, your body undergoes severe strain and adding anxiety makes your body work even harder. This is not to say that that I don’t have my moments. There are times I feel angry and upset. I wonder why I was struck with this and how my life could just be put on total pause. I always remind myself through, that regardless of why, this is my current situation. The only thing I can control is my mentality. I focus much of my energy understanding the treatment and observing new things about the world. When you open up your mind, you will be surprised by the things you learn and notice.
While in the hospital, I had my 18th birthday. I never thought I’d be shaving my head on my birthday, but I wanted to make it memorable. Losing my hair didn’t scare me. I knew I couldn’t watch it fall out and I wanted to take the opportunity to try new hairstyles along the way. Hair grows back. Hair does not define me. 
One of the highlights of ASH is the Plenary Session: studies selected for this event are considered “practice changing” and the presentations are held in the largest halls, allowing for many of the thousands attending the meeting to hear about the most impactful findings.
