“People say, oh I could never do that! But when you meet cancer patients, you understand the bravery and spirit those people show each and every day. Their struggles motivate and inspire you to test the limits of your endurance and to cross that finish line. You’ll be surprised by what you can do.”
– John Kelleyni
On July 2, LLS lost one of our most dedicated volunteers, John Kellenyi, to cancer. John was a lifelong philanthropist and marathon enthusiast, supporting LLS for almost two decades.
John started volunteering with LLS in 1999 as a Team In Training (TNT) participant, personally raising $122,000 that year alone.
In 2012, he joined his friends and colleagues from the New Jersey Chapter – Guy Adami, an anchor on CNBC’s Fast Money, and John Hyland, who has been struggling with acute myeloid leukemia (AML) since 2008 – in taking on the inaugural New York-New Jersey Ironman.
Just one thing – John didn’t know how to swim! While training for the rigorous 13-mile bike ride and 3.2-mile run John was also learning how to prepare for the half-mile swim.
In all, John ran a total of 40 marathons raising $1.4 million as a TNT participant, and more than $5 million in total for LLS.
John was passionate in his devotion to LLS, and he served on countless boards and committees. He served as New Jersey Chapter Board Chair and on LLS’s prestigious national Advancement Committee.
Summer is in full swing, and many of us are enjoying outdoor activities and lots of time in the sun. For cancer patients, being mindful of sun exposure before, during and after cancer treatment is extremely important.
According to The Leukemia & Lymphoma Society’s (LLS) Information Specialists, a team of master’s level oncology social workers, nurses and health educators, sunlight has benefits, but it is important to protect yourself from too much sun exposure.
Q. If I already have blood cancer, am I at an increased risk for skin cancer?
A diagnosis of certain blood cancers puts patients at an increased risk for skin cancer. Most cancer treatments including medications and radiation therapy increase your sensitivity to the sun. Studies have shown that skin cancer rates are greater in survivors.
Q. Should I avoid the sun during treatment?
People who are being treated with certain drugs or radiation therapy are generally advised to avoid all direct sun exposure during treatment, and for a period of time after completing treatment.
Q. Why is my skin more susceptible to sun damage during treatment?
Skin-related side effects of cancer treatment may include dryness, redness, itchiness or sores, making your skin more sensitive to the harmful effects of sunlight. It’s important to check with your doctor, oncology nurse or physician’s assistant about specific sun-related effects of your therapy.
Q. What sun safety tips do you recommend for cancer patients?
Plan ahead. Plan outdoor activities for early morning or late afternoon when there is moderate sun exposure.
Seek shade. The sun’s rays are reflected by sand, water and snow, so take extra care in these settings.
Use sunscreen. Use a product with a sun protection factor (SPF) of 15 or higher and choose one that protects against all types of sunrays. Use SPF 30 on any areas of your body directly affected by treatment with radiation. Reapply sunscreen after swimming or sweating.
Cover up. Wear a scarf or a soft hat with a wide brim to protect your head from the sun. Choose clothing that covers your arms and legs; consider wearing clothing specially designed to protect against UV rays, and avoid lightly woven fabrics that let the sun’s rays through.
Get a checkup. Schedule annual body checks with a dermatologist.
Please see the free LLS bookletUnderstanding Side Effects of Drug Therapy for additional suggestions to help you take care of yourself, plus questions to ask your doctor and nurse while you're undergoing treatment.
For more information, please contact an LLS Information Specialist Monday through Friday, from 9 a.m. to 9 p.m. Eastern Time toll free at (800) 955-4572. Click here to contact us by email or to chat live online with us.
Today is a very significant day in the progress toward cancer cures. An advisory committee of the U.S. Food & Drug Administration (FDA) unanimously recommended approval of a revolutionary new treatment for patients with relapsed/refractory acute lymphoblastic leukemia (ALL) – an immunotherapy called CAR-T (chimeric antigen receptor T-cell) immunotherapy.
The Leukemia & Lymphoma Society recognized the early promise of this new approach, which uses the body’s own immune system to find and kill cancer cells.
In fact, since 1998 LLS has invested $21 million in the work of Carl June, M.D., of the University of Pennsylvania, who is credited with pioneering this therapy.
Children like Austin Schuetz are the reason why this therapy is so important.
In May 2011, when Kimberly Schuetz was starting to plan her son Austin’s third birthday, he was diagnosed with a high-risk form of acute lymphoblastic leukemia. Austin was immediately placed on a chemotherapy regimen.
However, when a routine blood test revealed that he relapsed in October 2012, their only option was a bone marrow transplant to save his life. After that transplant, his cancer came back for the third time in May 2013.
At five years old, Austin had been dealing with leukemia for the majority of his young life. His parents enrolled him into a clinical trial for a new immunotherapy treatment. It was their only hope.
The pioneering therapy was administered to Austin at the Children’s Hospital of Philadelphia. Today, at age 10, he is in remission.
Austin was treated with CAR T-cell immunotherapy, which has proven to be effective in other patients with certain types of leukemia and lymphoma. Dozens of adults and children near death are now in remission, and some remain healthy up to five years after treatment.
Because we believe so strongly in immunotherapy, LLS has invested $2.5 million in a CAR T-cell immunotherapy developed by Kite Pharma, which is currently under review by the FDA to treat patients with relapsed/refractory non-Hodgkin lymphoma.
The deadline for the FDA to decide on the Novartis treatment is October 3, but today’s decision might accelerate the timing. The deadline for the Kite decision is November 29. We are hopeful that the FDA will approve both of these breakthroughs for the patients who need them.
This is a game-changer and this exciting development is just the beginning in understanding the best way to incorporate immunotherapy into blood cancer treatments.
Clinical trials for these therapies are ongoing. If you are a blood cancer patient or caregiver interested in enrolling in a clinical trial, you can contact our clinical trial support specialists at the LLS Information Resource Center.
Gwen Nichols, M.D., is the Chief Medical Officer of The Leukemia & Lymphoma Society.
John started volunteering with LLS in 1999 as a Team In Training (TNT) participant, personally raising $122,000 that year alone. 
