This website is run by The ROS1ders, a group of patients and family members dealing with ROS1 positive (ROS1+) cancer who are using their professional skills and passion to help other ROS1+ patients and families, and accelerate research into our disease. Legally, we are a California non-profit public benefit corporation. If you’re interested in contributing your skills and passion to our cause, please contact us.
In 2011, Lysa was diagnosed with stage 4 NSCLC at the age of 40. She initially had chemo, radiation and several surgeries before discovering her ROS1 status in 2013. She has now been on crizotinib for close to 5 years and is living an active life. She spends most of her time connecting with other survivors and advocating for more research funding.
Janet was diagnosed in 2011 with advanced lung cancer, which became metastatic despite chemo and radiation. After learning about genomic testing and clinical trials in online patient communities, she arranged to have her tumor tissue tested and joining the ROS1 clinical trial for crizotinib. She’s had no evidence of disease since January 2013. A “rocket scientist” and freelance writer, she translates the experience and science of lung cancer for others, tracks ROS1+ cancer treatment options, speaks at US and international cancer conferences, and serves as a research patient advocate. She blogs at Gray Connections and comoderates #LCSM Chat on Twitter.
Lisa was diagnosed with Stage IV NSCLC in January 2014, at age 41. She received chemotherapy until she became resistant after 8 months, and then she switched to the targeted therapy crizotinib, which she’s been doing well on since September 2014. Very soon after diagnosis, Lisa began blogging (at Every Breath I Take), connecting with other ROS1+ patients online, and advocating for more research into ROS1+ cancer. When not doing advocacy work, Lisa enjoys spending time with her husband, two kids and crazy cat.
In November 2014, Merel was diagnosed with an aggressive form of lung cancer. While waiting for molecular testing results, she got worse and therefore was given chemo as a first line therapy. Progressing after 8 months on crizotinib, she now is on lorlatinib. She is active as a patient advocate on in The Netherlands and at the European level to get more funding for research and expertise.
Baerbel has been living with advanced lung cancer since 2008. She had repeated chemotherapies and repeated relapses, also a surgery, many ups and downs with tumor growth after a few months whenever the treatment ended. The seemingly hopeless situation changed completely when she was the first European lung cancer patient diagnosed with a ROS1 rearrangement. Since October 2012, she takes crizotinib with an excellent response and no sign of tumor progression so far.
Tori was diagnosed with stage IV NSCLC in May of 2013 at age 37, with cancer spread into both lungs, throughout the bones and in the liver. After 6 rounds of chemotherapy, she discovered that her cancer has a ROS1+ driver, and started on crizotinib. For the next 4 years, crizotinib was her trusty companion, protecting her body wonderfully, but not working so well in the brain. Over those 4 years she had stereotactic radiotherapy 3 times, targeting small brain metastases. When she had a 4th occurrence in the brain, she moved into a clinical train for entrectinib. Throughout this cancer experience, Tori has been an active player in her treatment plan, advocating for and researching treatment options for herself and others with ROS1 driven cancer. She blogs at A Lil Lytnin’ Strikes Lung Cancer.
Marisa was diagnosed with Stage IV NSCLC in October of 2015 at age 30. She took the targeted treatment Crizotinib for the first year of her diagnosis, and in October 2016 switched to Lorlatinib, following the development of brain metastases. Marisa is interested in the variability of cancer treatments across the globe; in connecting with other young lung cancer patients; and advocating for advancements in the treatment of ROS1+ cancer. She recently participated in the ROS1ders’ very own patient-led initiative to develop cancer models for researchers by donating her ROS1+ pleural fluid. Marisa enjoys staying active through yoga and long walks with her dog, Floxie and partner, Nick.
Jess’s sister was diagnosed with ROS1 lung cancer in 2015. Jess is passionate about the patient-led opportunities afforded by technology and she uses her professional experience in product, service and brand design to help her fellow ROS1ders.
Last updated 30-Apr-2019