A special division of ICAN, International Cancer Advocacy Network
Improving Survival and Quality of Life, One Patient at a Time
Welcome to the support group for patients diagnosed with PDL1 (CD274) Amplification!
If your tumor is PDL1 amplified (PDL1 is also known as CD274; PDL1 and CD274 are the same gene), it means you have had a Next Generation Sequencing (NGS) report (also referred to as comprehensive biomarker testing or molecular profiling) that has found the PDL1 gene to be "amplified." You thus, have more copies of that gene than is normal.
So if you are PDL1 amplified, you have come to the right place.
We are a multi-stakeholder patient-focused organization featuring fellow PDL1 amplified patients, their care partners, and medical oncologists interested in this important gene amplification.
We are thrilled to have Razelle Kurzrock, MD as Honorary Chair of the PDL1 Amplifieds!
If your cancer is PDL1 amplified, you may well be a candidate for immune checkpoint blockade--the immunotherapies you hear about all the time--KEYTRUDA (pembrolizumab), OPDIVO (nivolumab), TECENTRIQ (atezolizumab), IMFINZI (durvalumab), BAVENCIO (avelumab), LIBTAYO (cemiplimab), and many more such drugs in the pipeline.
Why is Next-Generation Sequencing (NGS) critically important to identify PDL1 amplifications?
- Because as a seminal 2018 article by Aaron Goodman, MD and Razelle Kurzrock, MD et al. in JAMA Oncology reported, PDL1 amplification is a potential biomarker for immune checkpoint blockade response. (See source below)
- Because a tumor can have PDL1 low or absent by immunohistochemistry and still be PDL1 amplified and may still respond to checkpoint inhibitors (immunotherapy).
- And because a patient can be TMB low or intermediate and still be PDL1 amplified and might still be able to benefit from immunotherapies.
In a small study, nearly 70% of patients with end-stage, treatment refractory solid tumors with PDL1 amplification "had objective responses after checkpoint blockade administration." The longest responder remains in complete remission at 6.5 years.
PDL1 amplification has been identified in more than 100 different solid tumor types.
Some of the tumor types that have been shown to be PDL1 amplified are listed below; however, a small subset of virtually any tumor type can have PDL1 amplification:
- liver mixed hepatocellular cholangiocarcinoma
- metastatic basal cell carcinoma
- urothelial carcinoma
- bladder squamous cell carcinoma
- renal sarcomatoid carcinoma
- thyroid anaplastic carcinoma
- nasopharyngeal carcinoma
- soft tissue sarcoma (NOS or undifferentiated)
- head and neck squamous cell carcinoma
- lung sarcomatoid carcinoma
- cervix squamous cell carcinoma
- cancer of unknown primary (squamous cell)
- breast cancer (NOS or triple negative)
- lung squamous cell carcinoma
- epithelial ovarian carcinoma
- lung small cell carcinoma
- lung adenocarcinoma carcinoma
- hepatocellular carcinoma
- cholangiocarcinoma
- gastric adenocarcinoma
- gastroesophageal junction adenocarcinoma
- glioblastoma
- endometrial carcinoma
https://jamanetwork.com/journals/jamaoncology/fullarticle/2684636
(See Table at page 1240)
Know Your PDL1 Amplification
- Ongoing, Direct Navigation of Your Case
- Review of Your Biomarker Testing Reports
- Second Opinion Referrals
- Matching You with Clinical Trials / Expanded Access / Compassionate Use Matching
- Your Own "Angel Buddy" to Help with Side Effects, and...
- Guide to Collateral Medications for Patients on Anticancer Therapies, Elena Siltanen, MSc.Pharm
Essential
Patient Services
- Molecular Profiling Matching Services
- Molecular Tumor Boards (when oncologists disagree)
- Join our Mutational Registry
- Participate in our Tissue Triaging Service
- Join our NGS Ambassadors to Emphasize Molecular Profiling
- Know the Co-Alterations found with Your Insertion Mutation
PDL1 Amplified Research Initiatives
- Invitation to our On-Demand Summit/Video Project for Patients, Scientists, and Clinicians
- Real World Evidence Studies and Survey Research (you are compensated for your time)
- Participate in our Clinical Trials Project
The PDL1 Amplified Community: Keeping Up With Developments
- Access to our 10 Social Media Sites (closed group to protect your privacy)
- Access to our Virtual Patient and Care Partner Meet Ups (closed group to protect your privacy)
- Patient and Care Partner Meet-Ups at Conferences and Academic Medical Centers
- Patient and Clinician Webinars on New Drugs
- Research and Literature Updates and Daily Alerts/Postings
- Cancer Conference Updates
Paying It Forward: Helping Our PDL1 Amplified Community
- Become an Angel Buddy for a New Patient or Care Partner
- Participate in our Public Policy Advocacy Initiatives and Briefings
- Train to be an Effective Citizen Lobbyist or Media Interviewee
- Participate in our Speakers Bureau
- Assist our International Health Equity Efforts
- Volunteer for Clerical and Excel Projects
- Join our Research Teams
Keep the PDL1 Amplifieds Going
- Help the PDL1 Amplifieds Raise Funds to Keep Our Patient and Research Services Entirely Free
- Create a Facebook, Twitter, or Instagram Fundraiser Benefiting the PDL1 Amplifieds
- Donate to Fund These Services
- Donate Appreciated Stock
- Leave a Legacy—Create a Named Program
- Donate In-Kind Services
Membership
All you need to do to join the PDL1 Amplifieds is:
- Please fill out the PDL1 Amplifieds Intake Form and submit it to us.
- After reviewing your PDL1 Amplifieds Intake Form, we will then schedule an intake phone interview with you, or with you and your family, to discuss your case and confirm your specific PDL1 Amplification (making sure you that you have had NGS or Next-Generation Sequencing to identify the amplification).
- Alternatively, you may email membership@pdl1amplified.org and tell us that you are interested, and we'll schedule an Intake phone call with you or with you and your family since the journey with a PDL1 amplfication is very much a family affair.
Since ICAN and the PDL1 Amplifieds strictly adhere to all HIPAA (Health Insurance Portability and Accountability Act of 1996) provisions to protect your privacy, during our initial intake call/meeting with you, we will review, and you will have a chance to discuss with us our Navigation Consent forms.
PDL1 Amplified Leadership
PDL1 Amplified (https://pdl1amplified.org) is a special division of
ICAN, International Cancer Advocacy Network.
*Marcia K. Horn is President and CEO of
ICAN International Cancer Advocacy Network and
Executive Director of the Exon 20 Group and PDL1 Amplified.