A cancer diagnosis is a devastating blow for people of all ages, but presents special challenges for young adults. This period of life is usually a time of transition as they are embarking on journeys such as school, relationships and careers. A cancer diagnosis can bring their lives to a screeching halt in the midst of these new adventures.
According to Abby-Gail Solomons, MSW, AAS Courtelis Center for Psychosocial Oncology UM Sylvester Comprehensive Cancer Center, “Young adults' needs are different because they're now in a unique area of their life. They're now transitioning into independence, trying to navigate work, trying to navigate school, peers, relationships, family life, so with this added layer of being diagnosed and going through treatment, it can become a lot for any young adult, and overwhelming. There's a lot of concerns and fears.”
In 2014, The Leukemia & Lymphoma Society (LLS) produced a moving video series, Cancer Survivorship in Young Adults: Acute Lymphoblastic Leukemia, which featured first-hand accounts from acute lymphoblastic leukemia (ALL) survivors about coping with their diagnosis and treatments, long- and late-term effects of treatments and survivorship.
We recently caught up with some of the survivors from the original videos to produce a new series, Young Adult ALL Survivors: Where Are They Now? Betty, Javier, Jeremy and Stephen joined us once again to share how cancer has impacted their careers, relationships and fertility since our last conversation. While each survivors’ story was unique – common threads ran throughout their experiences.
Here are some highlights from this latest series:
Careers: Each survivor was at a different stage of their career when they were diagnosed, with some even still in school. Betty was just coming off a four-month maternity leave and didn’t have any vacation time left. “Everybody donated their vacation and sick time to pay for my health insurance for six months,” she said. Stephen says he had a similar experience as Betty. “My co-workers, the few that knew what I was going through, they donated time and even some others who didn't know all the details, but they knew I was out, they donated their vacation and sick time and all that and I was able to get an actual salary for a lot of it.”
Jeremy, who was in college when he was diagnosed but was just about to enter the workforce, felt obligated disclose to potential employers that he was still in treatment because he would need to be out of the office at times. He felt "if they find out and they don't want to work with me, then I don't want to work for them."
Javier, who was in middle school when he was diagnosed, says he had no career plans at the time. When he finally entered the work force years later, he was reluctant to discuss his experience until he learned a fellow coworker had breast cancer. “She had a lot of questions,” he recalled. “I guess that's when I opened up and my colleagues found out what I had because at that point no one really knew and luckily that helped me. I was able to help her, point her in the right direction of certain things that I was able to answer certain questions.”
Fertility: For Jeremy, a glitch in the hospital process almost cost him the chance to have a family. “I was in college when I was diagnosed so they actually asked me if I wanted to bank (sperm) before getting chemo, and there was a little bit of logistical issue where they put the chemo in before the person came to do the banking. And legally they couldn't take it then.” Several years later he successfully started a family and now has two children, but he was left with a valuable lesson, “I guess the thing that I learned from it is asking the question upfront and making sure that you're your own advocate.” Fortunately, Betty, Javier and Stephen were all able to fulfill their dreams or starting or expanding their families.
Relationships: All four survivors are currently in loving, supportive relationships and all have children, but unfortunately for Betty, her battle with cancer ended her marriage. “The strain of the cancer treatment, financial issues and burdens that we went through ended our marriage.” While she notes that dating after cancer can be frustrating, Betty found love again. However, because her current partner didn’t live through her cancer experience she finds it difficult at times. “It's hard emotionally sometimes because I wish that he understood,” she notes. “And you can't understand unless you're there.”
Any patient, family member or caregiver who is affected by a blood cancer diagnosis is encouraged to contact an LLS Information Specialist who can provide one-on-one assistance throughout cancer treatment, financial and social challenges and give accurate, up-to-date disease, treatment and support information. Our Information Specialists are master's level oncology social workers, nurses and health educators. Click here to contact us.
For information on other LLS resources available to young adults, please visit www.LLS.org/youngadults.
The Leukemia & Lymphoma Society (LLS) is out to prove the benefit of everyday kindness, on the third annual National Random Acts of Light Day, set for June 13. In conjunction with LLS’s Light The Night campaign, Random Acts of Light aims to create awareness and educate the public about the critical need to fund research to find cures for blood cancer patients, and ensure they have access to lifesaving treatments. In celebration of bringing light to more than 50 cancer patients since the campaign launched in 2016, LLS is highlighting some remarkable young survivors who were featured in Random Acts of Light campaign in 2019.
Athena Receives a Chocolate Lover’s Dream
Eight-year-old Athena, an acute lymphoblastic leukemia (ALL) survivor, is a huge chocolate lover. In fact, chocolate helped her cope with her treatment. When she was surprised with a day to be a “kid in a candy shop” at Aigner Chocolates in Forest Hills, NY, she was living a chocolate lover’s dream. Athena received a tour of the chocolate shop, including unlimited taste tests! She even went home with a two-foot bunny – more chocolate than she could carry!
Mikah Becomes a NFL Player for a Day
Last year, five-year-old Mikah was diagnosed with B-cell acute lymphoblastic leukemia, but chemotherapy didn’t stop him from becoming a “Los Angeles Charger for a day” when he was presented with a Random Act of Light from LLS and the Chargers. His special surprise included hanging out with Chargers center Scott Quessenberry, a personal tour of Hoag Performance Center, a personalized nameplate in the locker room and more.
Daylin Receives a Surprise of a Lifetime: A Trip to Disney
When 13-year-old Daylin of Lake Wales, FL, was diagnosed with acute myeloid leukemia (AML) in May 2018, he was given a 10 percent chance of survival. A bone marrow transplant from his mom ultimately saved his life, and today, Daylin is in remission. To brighten his spirits, LLS surprised Daylin with three all-inclusive tickets to Busch Gardens Tampa! In addition, the aspiring football player received a jersey signed by his idol, NFL wide receiver, Odell Beckham Jr.
Want to get involved?
Despite the many advances in cancer treatments and survival rates, many patients are still living with cancer and experiencing the darkness that can come with it. If you want to join the movement and bring light to someone you know who has been touched with cancer, here are some ways you can get involved:
Post about National Random Acts of Light Day on June 13 and tag #RandomActsofLight across your social channels
Create a special experience for someone touched with cancer in your community – this can be however big or small. Some ways you can help:
Surprise a family in the hospital with a meal or gift certificate
Give a patient or survivor free tickets to a game for their favorite team
“What is your goal as a doctor?” Atul Gawande, M.D., a surgeon, writer, professor, and staff writer for The New Yorker, asked the audience of thousands of clinicians, researchers and other healthcare professionals as the guest speaker at the opening session of the 2019 ASCO (American Society of Clinical Oncology) Annual Meeting in Chicago. Gawande wrote the book, “Being Mortal,” about palliative care, and in his talk on Saturday he pondered that doctors’ ideas about best care are not always aligned with patients’ priorities. Survival at any cost, including poor quality of life, may not always be the endgame for a patient. Maybe a doctor’s goal for a terminally ill patient should be to give them “their best possible day today regardless of what the consequence is tomorrow,” Gawande suggested.
As this #ASCO19 winds down, I sifted through the thousands of presentations to reflect on just a few highlights:
Addressing Disparity
One study presented this weekend shows a connection between expansion of Medicaid under the Affordable Care Act (ACA) and a reduction in racial disparities in accessing timely cancer care. Prior to the ACA going into effect, African Americans with advanced cancer were 4.8 percent less likely to receive timely treatment compared with white patients. These racial disparities all but disappeared in states where expansions were implemented. LLS is committed to taking on disparities as well. We have a program called Myeloma Link focused on bringing information about myeloma to African American communities through churches and community centers, as African Americans are twice as likely white Americans to develop myeloma, but less likely to access care and treatment.
Novel Targets in Myeloma
As immunotherapy becomes a mainstay of cancer treatment, innovative approaches to engage the body’s immune system are showing promise in treating patients with multiple myeloma (MM). An antibody treatment called daratumumab (Darzalex (R) is approved for relapsed MM patients, and continues to be tested in various triple, even quadruple combinations with encouraging results, possibly paving the way as a new first-line therapy. Needless to say, combining four treatments can pose significant cost barriers. Daratumumab targets a protein called CD38, but another protein called B-cell maturation antigen, or BCMA, also found on the surface of myeloma cells, is another compelling experimental target.
One experimental approach, chimeric antigen receptor (CAR) T-cell therapy, programs the patient’s own T cells to home in on the BCMA protein on the myeloma cells. These CAR-Ts have shown good initial response rates in clinical trials but to date the CAR-T cells don’t last and most of the myeloma patients eventually relapse.
Another type of immunotherapy competing with CAR-T is called a bispecific T-cell engager (BiTE). The BiTE is engineered with two different antibodies, one that links to the BCMA on the surface of the myeloma cell and the other that links to the cancer killing T cells, forming a bridge that delivers the T cells to the tumor. A study presented at the ASCO meeting of AMG 420, a BiTE being developed by Amgen, showed responses in 13 or 42 patients in a Phase 1 trial. There is, however, serious concern about toxicity with this drug, with some of the patients requiring hospitalization. For both the BCMA targeting CAR-T and the BiTE, the durability of response remains a question. Developing CAR-T cells is more onerous as they have to be tailor-made for each patient, while BiTEs can be manufactured “off the shelf” as a uniform product for all patients.
More Chemo-Free Combos for CLL
Chemotherapy, which kills cancer cells by attacking the DNA of the cells, can be effective, even curative, but can also causes harm to healthy cells. Chemo has been the standard of care for many cancers for decades, including chronic lymphocytic leukemia (CLL). But more chemo-free combination therapies that target bad-acting genes while sparing the healthy cells, are pushing chemo regimens aside.
Two powerhouse breakthrough therapies, ibrutinib (Imbruvia (R) and venetoclax (Venclexta (R), both oral medications that target different genetic mutations, are each approved individually for CLL. LLS has supported research over an extended period of time to advance both of these therapies. Now a study published the Wednesday before the ASCO meeting in The New England Journal of Medicine and discussed during the meeting, shows strong response rates when the two drugs are combined, and could become the new standard of care, particularly for older adults with high-risk CLL.
Precision Medicine
While The Leukemia & Lymphoma Society is, of course, focused on cancers of the blood, results of a study in pancreatic cancer brings home the message that precision medicine, matching patients to medicines based on their genetic profile and other factors, is becoming more than just a buzz word. A medicine, olaparib (Lynparza ®) which is FDA-approved for breast and ovarian cancer patients who test positive for the BRCA gene, is showing that it might also work for patients with pancreatic cancer who have the same mutation. For patients in that subgroup, this is hopeful news for one of the most deadly and impenetrable cancers. A study of the drug showed that patients went twice as long without their tumors growing on this drug as compared to patients receiving a placebo. The patients in both groups were first treated with standard chemotherapy.
Of course, LLS has been leading a groundbreaking precision medicine trial of our own to conquer one of the most deadly blood cancers, acute myeloid leukemia. The Beat AML Master Clinical Trial is more than two-and-a-half years under way, using sophisticated genomic technology to test multiple targeted drugs at multiple clinical sites. To date, more than 550 patients have been screened in the trial and our first data was presented in December. Now we're looking to expand on this successful model to pediatric acute leukemia and other adults with other cancers over the coming year. Stay tuned…
