This past week, the first scientific publication from the Lung Cancer Registry (www.lungcancerregistry.org) was published in the journal Cancers in a special edition on symptoms and side effects in cancer survivors. The study was led by Heather Jim, PhD of Moffitt Cancer Center and Adam Dicker, MD, PhD of Thomas Jefferson University, in collaboration with the Lung Cancer Registry, a program of GO2 for Lung Cancer. A special thank you to the and GO2 communities as these scientific findings were made possible by you!

The published results show the patient-reported side effects of immunotherapy treatment for lung cancer on the Lung Cancer Registry patient population. While side effects are reported in clinical trials, only a small percentage of people enroll in trials. Therefore, there is not a lot of data on real-world use of these immunotherapy drugs and their effects on a diverse patient population. Members of GO2 Lung Cancer Registry completed a short survey that asked which immunotherapy drug they were currently taking, how long they had been taking the drug, what symptoms and side-effects they were experiencing and impacts on their quality of life.

The study found that fatigue, aching joints, and muscle aches were the three most commonly reported side-effects. Insomnia, shortness of breath, itching and skin dryness were also reported by at least half of study participants. Of the 226 patients studied, 25% had to delay their treatment due to side-effects, 12% had to visit the emergency room and 9% were hospitalized. Notably, the study compared four different immunotherapy drugs, all PD-1/PD-L1 checkpoint inhibitors. There was no significant difference in treatment delays, hospitalizations, or quality of life between the different immunotherapy drugs.

These findings are important to patients, survivors, caregivers, and clinicians because they improve our understanding of commonly used immunotherapy drugs and their possible side effects. They provide new, more generalizable information about the severity and frequency of side effects of patients taking these drugs in the general population. The data will also help clinicians determine the best palliative care and symptom management approaches to ensure high quality survivorship for people taking immunotherapy drugs.

You can read the full publication (for free) here: https://www.mdpi.com/2072-6694/13/1/103

Thank you to everyone who completed this survey and contributed to this published scientific research that will make a difference for those diagnosed and living with lung cancer now and in the future. You can help make a difference by joining the Lung Cancer Registry today and participating as a survivor, patient or caregiver in current and future studies. Please join our community and register for free at www.lungcancerregistry.org.