On April 13, 2018, the ROS1ders and the Addario Lung Cancer Medical Institute launched an initiative to create new ROS1 cancer models from biopsy and surgery specimens donated by ROS1ders. ROS1 positive cancer is a rare mutation. Without a mobilized effort within the Ros1 community, it is difficult for researchers to gather enough patient samples to study drug resistance, which in turn limits the development of new treatments.
I am proud to have been one of the first patients to participate in the program. A few weeks after I sent my donation to the principal cell line investigator (Dr. Robert C. Doebele, MD, PhD, at the University of Colorado), he contacted me to share the good news that he had successfully created a cell line from my pleural fluid donation. The process was so simple and rewarding. I later mailed a second donation. Both were at no cost to me or my doctor. Since I was an early participant in this program, I wanted to share tips to help others make a donation.
Marisa’s Tips for ROS1ders who are Donating Fluid or Tissue:
Be prepared. Keep your original pathology and molecular analysis reports on hand to simplify and expedite your donation in the event of a biopsy/drain.
Call Nurse Alicia at 866-988-ROS1 (7671) as soon as you know you will be getting a biopsy or collecting fluid.
For donations from a catheter, tell Nurse Alicia the size of your drain bottle in order to receive size-appropriate shipping materials.
Send your donation within 30 days of submitting your signed authorization.
Schedule the biopsy/collection on a weekday, Monday -Thursday.
Ship the tissue/fluid the same day as it is collected.
Let your oncologist know you plan to participate in this study before progression happens. The final page of this newsletter is a letter you can take to your next visit to your oncologist, describing the study.