Janet Freeman-Daily's Lung Cancer Journey
•Download as PPTX, PDF•
2 likes•2,527 views
This document details Janet Freeman-Daily's journey with lung cancer. It describes her initial diagnosis in 2011 with Stage 3A NSCLC and subsequent progression to Stage 3B/4 and metastatic disease by 2012. She underwent various treatments including chemotherapy and radiation. In 2014, testing found her cancer was positive for ROS1 and she enrolled in a clinical trial for the drug crizotinib, which put her cancer into remission. The document advocates for the role of patients in clinical research and precision medicine, describing several organizations where patients can contribute medical data and help advance research into rare cancers.
Recommended
Recommended
More Related Content
Similar to Janet Freeman-Daily's Lung Cancer Journey
Similar to Janet Freeman-Daily's Lung Cancer Journey (20)
Recently uploaded
Recently uploaded (20)
Janet Freeman-Daily's Lung Cancer Journey
- 1. Janet Freeman-Daily, MS, ENG Writer, Science Geek, Lung Cancer Patient February 19, 2015 Twitter: @JFreemanDaily blog: grayconnections.net
- 2. Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 2 http://maryrobinettekowal.com/journal/jay-lake- genome-scarf/
- 3. Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 3 http://maryrobinettekowal.com/journal/jay-lake- genome-scarf/ http://www.youcaring.com/medical- fundraiser/sequence-a-science-fiction-writer/38705
- 4. My Lung Cancer Journey © Janet Freeman-Daily 2015 -- @JFreemanDaily -- grayconnections.net 4 Stage 3a NSCLC 05/2011 5/2011 5/2012 5/2013 5/2014
- 5. © Janet Freeman-Daily 2015 -- @JFreemanDaily -- grayconnections.net 5 Stage 3a NSCLC 05/2011 Stage 3b/4 10/2011 Clinicians My Lung Cancer Journey chemo- rad 5/2011 5/2012 5/2013 5/2014
- 6. © Janet Freeman-Daily 2015 -- @JFreemanDaily -- grayconnections.net 6 Stage 3a NSCLC 05/2011 Stage 3b/4 10/2011 Metastatic 09/2012 Clinicianschemo- rad chemo rad My Lung Cancer Journey 5/2011 5/2012 5/2013 5/2014
- 7. © Janet Freeman-Daily 2015 -- @JFreemanDaily -- grayconnections.net 7 Stage 3a NSCLC 05/2011 Stage 3b/4 10/2011 Metastatic 09/2012 Clinicians chemo- rad Patient chemo rad EGFR, ALK neg Submit slides for gene panel Request pathology results 10-gene panel neg Interact with online lung cancer community and follow research developments My Lung Cancer Journey
- 8. © Janet Freeman-Daily 2015 -- @JFreemanDaily -- grayconnections.net 8 Stage 3a NSCLC 05/2011 Stage 3b/4 10/2011 Metastatic 09/2012 Clinicians chemo- rad Patient chemo rad clinical trial (crizotinib for ROS1 NSCLC) EGFR, ALK neg Submit slides for gene panel Request pathology results Visit U of Colorado Hospital request ROS1/RET tests enroll in clinical trial ROS1 pos 10-gene panel neg travel to site, take meds, labs/scans, track SEs Interact with online lung cancer community and follow research developments My Lung Cancer Journey
- 9. I’m Alive Thanks to Precision Medicine … and Other Patients © Janet Freeman-Daily 2015 -- @JFreemanDaily -- grayconnections.net 9 Stage 3a NSCLC 05/2011 Stage 3b/4 10/2011 Metastatic 09/2012 Clinicians No Evidence of Disease since 12/31/2012 chemo- rad Patient chemo rad clinical trial (crizotinib for ROS1 NSCLC) EGFR, ALK neg Submit slides for gene panel Request pathology results Visit U of Colorado Hospital request ROS1/RET tests enroll in clinical trial ROS1 pos 10-gene panel neg travel to site, take meds, labs/scans, track SEs Interact online with lung cancer patients and follow research developments
- 10. Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 10 http://www.smartpatients.com/lung-cancer/trials
- 11. What is the purpose of a Clinical Trial? EXPERIMENT TREATMENT & HOPE ©Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 11Image Credits: Microsoft Powerpoint clipart For Clinicians, Researchers, Pharma, Industry: For Patients:
- 12. The Life Raft Group: gastrointestinal stromal tumors (GIST) Patients began sharing Gleevec trial experiences online in 2000 In 2001, published review of Gleevec side effects from patient viewpoint Maintains largest patient-provided clinical database in world, including GIST tissue, patient history, side effects, relapse rates Initiated “Project D-Day” in 2010 to sequence GIST genome , conduct gene knockdown studies, screen drugs, validate research Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 12http://liferaftgroup.org/ The new research model pioneered by the Life Raft Group is making it possible for patients and family members to contribute to clinical research for their diseases in unprecedented ways. George Demetri, M.D., Medical Director, Center for Sarcoma and Bone Oncology at Dana-Farber Cancer Center
- 13. LeioMyoSarcoma Direct Research Foundation Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 13http://www.lmsdr.org/stanfordu.php
- 14. Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 14http://dev.transparencyls.com/
- 15. ALCMI Biobank Labs • Online recruitment • Online consenting • Remote sample handling • Remote follow-up • Site coordination ALCMI Project Manager Site Coordinators Clinicians Genomics of Young Lung Cancer Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 15
- 16. Genomics of Young Lung Cancer 0 10 20 30 40 50 60 Projected Actual Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 16 Patient Enrollment in Trial
- 17. Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 17 https://www.change.org/p/protect-patient-access-to-precision- medicine-tell-fda-to-withdraw-proposed-ldt-regulations
- 18. Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 18 http://www.ctti-clinicaltrials.org/home
- 19. Where to find epatients Research Advocacy Network ePatient organizations -- Society for Participatory Medicine Disease-specific advocacy organizations ePatient advisory boards Patient-centered conferences -- Stanford Medicine X Healthcare chats on Twitter -- #LCSM, #HCLDR … Patient blogs Online patient forums and Facebook groups Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 19
- 20. Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 20
- 21. Janet Freeman-Daily, MS, ENG Writer, Science Geek, Lung Cancer Patient Twitter: @JFreemanDaily blog: grayconnections.net janet.e.freeman@alum.mit.edu Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 21
Editor's Notes
- Thank you for inviting me to speak to you today. I’m going to share a view of precision medicine from the patient’s perspective. If I seem a bit tense, blame it on the PET scan I'll have 4 days from now. I'll post the speech on my blog tomorrow, so you don’t have to take notes.
- This is the legacy of an epatient. It’s a genome scarf. It represents the chromosome 18 base pair sequence of colonrectal cancer patient Jay Lake. Jay was a prolific science fiction author and my friend.
- Jay was example of an epatient: a patient who is Equipped, Engaged, Empowered, and Enabled, whether or not they're online. In 2011, after several surgeries and chemo regimens, Jay was running out of options. Friends told him about genomic sequencing and helped him research clinical trials. The science fiction community crowdsourced the funding to sequence and analyze Jay’s personal and cancer genomes. Jay shared his data with NIH researchers for his immunotherapy trial, and with Harvard’s open-source Personal Genome Project.
- Like Jay, I’ve pursued cutting-edge scientific research in hopes of living longer with metastatic cancer. I was diagnosed with Stage 3a non-small cell lung cancer in May 2011. I never smoked anything – except a salmon.
- AfterAfter a month’s delay to treat pneumonia, I had concurrent chemo and radiation. My primary tumor and lymph nodes all responded. Two months later, a PET scan found a new hotspot on my collarbone. A biopsy confirmed my cancer had progressed. Since I had severe radiation pneumonitis, my oncologist recommended a break from treatment. In the next three months, I grew a 3-inch mass on my collarbone.
- I had more chemo, followed by more radiation. A new scan showed all the known tumors were gone or dead. BUT … I had two new tumors in my other lung. I now had metastatic lung cancer. Whenever I stopped treatment, I had a new tumor within two months. My oncologist told me I would be on chemo for the rest of my life.
- However, I wasn’t just a recipient of care. The information I learned in the Inspire online lung cancer community enabled me to become an interactive participant. From other epatients, I learned to ask for my data, including radiology and pathology reports. I also learned more extensive molecular testing was available at other facilities, and arranged to have my slides sent to the University of Colorado Hospital for a 10-oncogene panel. Unfortunately, all tests were negative.
- Here’s where the tone of my story changes. An online patient told me I fit the profile of patients who had the ROS1 translocation--relatively young, adenocarcinoma, neversmoker, triple negative for the most common mutations. He sent me the journal article of early trial results. After my second progression, I contacted University of Colorado again, and learned they had recently developed a ROS1 test. I gave permission to use my remaining slides. When I learned my cancer was ROS1 positive, I enrolled in the crizotinib trial in Colorado.
- Thanks to precision medicine and the online lung cancer community, I've had No Evidence of Disease for over two years. I'm not cured, but life is relatively normal for now--if you ignore the scanxiety every 8 weeks. I chose to enroll in a trial for treatment in hopes of better option than chemo forever.
- Epatients are very interested in the treatment options available in precision medicine trials, but sometimes we have trouble finding the right ones. New trial finders--like this format created with input from epatients--can help patients find the right treatment at the right time.
- For clinicians, researchers, pharmaceutical firms, and industry, clinical trials are scientific experiments. For epatients, clinical trials are treatment. Clinical trials are hope. By collaborating with epatients early in the design process, clinical trials not only can recruit more patients--they also move cancer research forward in ways that are meaningful to patients. Here are some examples.
- One of the earliest examples of patient involvement in clinical trial design comes from the Life Raft Group. In the year 2000, gastrointestinal stromal tumor patients involved in the early Gleevec trials began sharing their experiences online in ACOR. Now Life Raft Group has the largest patient-generated clinical database in the world, and is driving research on GIST genome sequencing and drug screening.
- Another example of patient-driven research is the Leiomyosarcoma Direct Research Foundation. LMS is very rare--only 4 people in 1 million have it. In 2004, over 800 of those patients were members of an ACOR online support group. One group member read a journal article about a GIST molecular study, and emailed the researcher to ask “What would you need to study LMS?” The answer was “tissue samples" Patients recruited 500 donors from the online group, collected slides from clinics, deidentified them, and gave them to the researcher. The Stanford lab has since identified several molecular subtypes of LMS as well as potential drug targets, and published nine journal articles in its first four years. Key elements of this successful research collaboration were a motivated online patient network and a researcher who listened to those patients and trusted them as collaborators.
- Technology is providing new ways to incorporate the patient voice. In December 2012, the FDA cleared an Investigational New Drug Application (IND) for a multiple sclerosis therapy. What's remarkable is that the clinical trial protocol was the first ever developed with the aid of global crowdsourcing. That helped define primary and secondary endpoints, inclusion/exclusion criteria, and remote monitoring strategies for tracking patients.
- Patient networks and online technologies are also driving research for the most deadly cancer: lung cancer. Currently 3-6 thousand newly-diagnosed lung cancer patients in the USA are under the age of 40, typically athletic never smokers. Patient-founded organizations designed a study of the somatic and germline mutations that might be driving the cancer in these young patients. The study is unique in that it allows patients to enroll either at a study site or online. It also provides genomic profiling data and treatment recommendations to patients as well as physicians.
- Because this trial addressed needs expressed by patients, and included the patient voice in all phases of trial development, it achieved ***check fact** 50% accrual in the first month after opening.
- Patients, clinicians, and researchers can also collaborate on regulatory issues that impact clinical trials. While working with a laboratory director at the University of Colorado, Dr. Dara Aisner, I realized that patients like me who had a genomic cancer variation might be unable to access essential testing under the FDA's proposed regulations for laboratory developed tests. By collaborating with medical professionals, I was able to help lung cancer advocacy groups submit comments to the FDA, and draft an online petition that collected over 700 signatures in less than three days. You can still sign the petition, by the way.
- The Clinical Trials Transformation Initiative, which seeks to increase the quality and efficiency of clinical trials, recognizes the patient voice must be included when defining the precision medicine landscape.
- If you're interested in finding epatients for collaboration, there are many places you can look for them. Here’s where they may be hiding. Research Advocacy Network ePatient organizations (like the Society for Participatory Medicine) Disease-specific advocacy organizations (like Addario Lung Cancer Foundation) ePatient advisory boards like the one at Stanford Medicine X Patient-centered conferences like Stanford Medicine X Healthcare chats on Twitter like #LCSM or #HCLDR (search Symplur’s Healthcare Hashtag Project or Cancer Tag Ontology) Patient blogs-- you can start at CURE Today Magazine Online patient forums like Inspire and Smart Patients, and Facebook groups
- When President Obama announced the Precision Medicine Initiative, he said: "Patient advocates are not going to be on the sidelines. It's not going to be an afterthought. They're going to help us build this initiative from the ground up." He recognized the importance of including patient voices early in the design process. To be successful in the age of precision medicine, oncology researchers must collaborate with patients.
- I hope I’ve encouraged further collaboration between cancer epatients, researchers, and industry. It will create faster paths to cancer cures. Thank you for inviting me to share an epatient perspective at this symposium.