The symptoms I habitually pushed off as stressors from my first semester of college, began to accumulate. Throughout the semester I felt less like my healthy self because of coughing, abnormal skin reactions, unexplainable fatigue and diminishing motivation.
There was a relief when my diagnosis came over winter break. I now knew there was a potential fix for the growing list of symptoms from cancer, and they were not simply figments of my imagination. After the official diagnosis of stage III Hodgkin lymphoma, it was decided I would withdraw from the University of Maryland for the upcoming spring semester with the hope of returning in the fall after treatment.
For the first time in my life, everything was put on hold. I had one job: to get better. Living back home to receive an aggressive treatment of A+AVD chemotherapy after the taste of freedom the university life offered was one of many challenges.
My doctor affirmed my struggle was similar to other 19-year-old females diagnosed with cancer. For my peers, this is a time of self-discovery, education, growth, and fun. However, I was stopped and forced to battle the hardest physical struggles, the possibility of death and the unknown of the future, including the 1 in 3 chance of my prescribed chemotherapy regiment leaving me infertile.
Giving Back: Donating My Hair
I discovered I could utilize the fundamental aspects of my personality to find the best me during treatment. My solution was to give. Cancer is a job that drains your energy and wreaks havoc on your physical body and mental space, but by tapping into my inner strength I was able to find the energy to help others.
Before my first chemotherapy treatment, I donated the majority of my hair. I chose a pixie cut, opting for a stylish hairdo I did not have to commit to for long.
I went back to the salon to bleach my hair. Then after my first treatment, I dyed my hair violet purple – the color of the Hodgkin lymphoma cancer ribbon. This was my favorite hair transition because it was meaningful and unique. When my hair started to fall out, I decided to dye it one last time – the color black. It turns out I was blonde for a reason. Black hair did not suit me. Somehow that helped prepare me for when I went back to the salon to shave off what was left of my hair.
I was able to make the transition of losing my hair more manageable by donating it and continuing to have fun before the inevitable. I’ve spoken with other cancer patients and survivors and it is my understanding that some people struggle with losing their hair more than others. I would say my emotions were somewhere in the middle. But now being weeks out from my last treatment, I am anxious for my hair to start growing back.
Finding a Greater Purpose
I became stir crazy in my house and decided to look for a job. I was hired as a line-worker at a fast-casual restaurant local to Fort Collins, Colorado, where I was receiving treatment. With a renewed focus to help the business thrive through customer service, I was able to have moments where I did not focus on cancer. Being inspired and distracted through conversations with coworkers and customers helped me find strength and motivation.
During my high school’s annual fundraiser for The Leukemia & Lymphoma Society (LLS), I was honored to make a video to share my story. Planning with staff and student leaders resulted in a meaningful and successful fundraiser. In three weeks, Fort Collins High School raised funds, held a hat and scarf donation for the local infusion center and made cards for local cancer patients. I was proud. The school was inspired. And the community was touched.
LLS is an important organization for my family. My aunt has been battling myeloma for ten years and LLS has provided her with education and support, while also funding groundbreaking research to find cures. During my treatment, I attended a regional LLS Blood Cancer Conference where I learned coping strategies and found a new friend my age who survived going through almost the same exact treatment as I did. Further, I know that funding groundbreaking research can lead to lives saved. In fact, because of LLS’s long-term investment in research, I was given brentuximab as a first line treatment.
Most importantly, LLS has provided me an outlet to share the many words in my mind, passion in my heart and ideas. By having my own blog and sharing my story with other patients through LLS Community and on this blog, I am able to connect with others and receive incredible support.
This is no way to sugarcoat what I and other patients go through when faced with a diagnosis of cancer. Every journey through cancer is unique, but by investing the little energy left I have found the energy to grow.
Elizabeth’s last day of chemotherapy was June 14, 2018. She is planning to go back to college this fall. To read more about her story, visit her blog at https://baldsocks.com.
The U.S. Food and Drug Administration’s latest approval of a blood cancer therapy is encouraging news for a group of lymphoma patients with a very rare subset of the disease called primary mediastinal large B-cell lymphoma (PMBCL). The approval is for patients who have relapsed after two or more prior lines of therapy or who did not respond to therapy at all.
PMBCL is a type of diffuse large B-cell lymphoma that occurs in the thymus, a gland in the chest area that is part of the immune system. PMBCL accounts for about 2-3 percent of all non-Hodgkin lymphomas; more than 650,000 people are currently living with NHL in the U.S. PMBCL tends to impact younger adults in their 30s and 40s.
The therapy approved Wednesday by the FDA is called pembrolizumab (Keytruda ®), an immunotherapy known as a checkpoint inhibitor, that works by blocking a specific protein, PD1 that acts as a mask, preventing the body’s immune T cells from recognizing cancer cells. Targeting this protein unleashes the immune T cells so they can attack the cancer cells.
Pembrolizumab was previously approved in March 2017 for Hodgkin lymphoma patients. Another checkpoint inhibitor, nivolumab (Opdivo ®), is also approved for Hodgkin lymphoma. Additional approved indications for pembrolizumab include solid tumor cancers such as melanoma, lung cancer, head and neck cancer, urothelial carcinoma, gastric cancer, cervical cancer, and microsatellite instability–high solid tumors.
While LLS did not directly support the trials leading to this latest approval, LLS supports many researchers investigating the utility of anti PD1 therapy in various types of lymphomas, including central nervous system lymphoma and follicular lymphoma. LLS has also supported research to other immunotherapeutic approaches to treating PMLBCL, and in fact, the approval of the Kite/Gilead CAR T-cell immunotherapy, Yescarta ®, last year was the outcome of the clinical trial supported by LLS.
Wednesday's approval is based on a clinical trial – Keynote-170 – involving 53 patients with relapsed/refractory PMBCL who were positive for PD1. The overall response rate was 45% with a complete response rate was 11%, and a partial response rate of 34%. The approval was under the FDA’s accelerated approval program, meaning further testing must still be conducted to received a full approval. To read more about this latest approval click here.
For the second year in a row, high school students across the country are redefining what it means to be philanthropic in today’s youth culture. Through The Leukemia & Lymphoma Society’s (LLS) newest innovation in fundraising, Students of the Year, more than 600 motivated high school students raised significant funds for LLS’s cutting-edge cancer research and patient services.
Candidates for Students of the Year sign up for a fierce seven-week fundraising competition, for which they appeal to family and friends to raise critical funds, which LLS deploys to advance breakthrough treatments and to support the more than 1.3 million blood cancer patients in the U.S. The candidates/teams who raise the most money at the end of the competition earn the title Student(s) of the Year. Top local fundraisers become eligible to win the national title. The students raise money in honor of a local patient hero who is currently battling or is in remission from a blood cancer.
2018 Students of the Year
Cousins Samir Shah, 16, of The Calverton School in Huntingtown, MD, and Saar Shah, 15, of Great Mills High School in Lexington Park, MD, raised the most funds across the entire US and earned the winning title, “National Students of the Year,” with a record-breaking raise for cancer cures. These fundraising superstars orchestrated a dynamic campaign that included an innovative kite festival, Fly4aCure, in their close-knit Southern Maryland community. “Flying a kite is a symbol of having high aspirations and elevated vision,” said Saar Shah. “We believe in our hopes and aspirations to find a cure for all blood cancers.”
The Shah family has been struck with blood cancers twice in the past few years. Their cousin, Ami, battled a deadly blood cancer, acute myeloid leukemia and she is now seven years cancer free. More recently, Samir’s dad, Amish, was diagnosed with primary mediastinal b-cell lymphoma. He underwent chemotherapy and celebrates his incredible recovery. “We know firsthand how important cutting-edge research and treatments are in the fight against cancer,” said Samir Shah. “We’re honored to be named this year’s Students of the Year, and we’re grateful to have had this opportunity to support The Leukemia & Lymphoma Society, an organization that helped our family in our time of need.”
“LLS is at the forefront of the fight to cure cancer and through our fundraising campaigns like Students of the Year, we are helping millions impacted by cancer,” said Louis J. DeGennaro, Ph.D., LLS president and CEO. This program is proof that the youngest generation has the power to help us create a world without cancer.”