ICAN®—International Cancer Advocacy Network
ICAN® is a 501(c)(3) patient advocacy and
research advocacy organization
with a small staff of professional advocates assisted by hundreds
volunteers worldwide. With our volunteer leadership representing
17 different time zones, we literally work around the clock,
focusing on our Personalized Medicine Cancer Case Navigation
Programs, health information technology issues, legislative
initiatives, and research projects.
We aim to provide you with the best patient advocates and the most effective cancer patient advocacy possible, with the twin goals of working to extend your life with
the highest quality of life.
ICAN® advocates for you – the patient – or for the patient's spouse or family member who wants to manage the details of their loved one's cancer case with us.
We are beholden to no one – no oncology practice,
no medical center, no clinical trial, and no biotech or
Your case is unique and in our many years of
non-stop advocacy services, we've never seen two patient cases
ICAN® empowers you to navigate rapidly-expanding
diagnostic and personalized treatment options. This information will assist you in informed discussions with
family and providers.
We never, ever, compromise patient privacy (zealous implementers of HIPAA) – We will not disclose your name or any identifying information, or exploit your case for fundraising purposes.
A New International Research Consortium to Battle Two Rare Cancer Mutations
In April 2016, Kevin Hanlon, an entrepreneur from Syracuse, New York, was diagnosed with an EGFR exon 20 insertion-mutated lung cancer. There are two types of exon 20 insertions, the other is a HER2 insertion. Both are rare gene mutations diagnosed in two percent of non-small cell lung cancer patients. Exon 20 insertions have also been found in 24 other cancers so far. Many of the patients diagnosed with these mutations are, like Hanlon, never-smokers in excellent shape....
— Marcia K. Horn JD, ICAN President and CEO and Exon 20 Group Executive Director
Published in The Future of Health (USA Today Mediaplanet digital supplement on Lung Health). Read the article
Watch a short video clip from Ellrose Hanlon, daughter of Exon 20 Group Co-Founder of cherished memory, Kevin Hanlon
"DART" Clinical Trial—first federally funded NCI dual immunotherapy trial
Is your tumor PD-L1 amplified by next generation sequencing (NGS)?
We don't mean PD-L1 over-expressing by IHC (immunohistochemistry). We mean PD-L1 amplification which is found by NGS in one out of 150 cancer patients.
- About Next Generation Sequencing (NGS)—Illumina
- Biomarker Testing—an important first step in diagnosis of mNSCLC—Genetch
Please share the following two journal articles with your oncologist:
- Roemer MG, Advani RH, Ligon AH, Natkunam Y, Redd RA, Homer H, Connelly CF, Sun HH, Daadi SE, Freeman GJ, Armand P, Chapuy B, de Jong D, Hoppe RT, Neuberg DS, Rodig SJ, Shipp MA. PD-L1 and PD-L2 Genetic Alterations Define Classical Hodgkin Lymphoma and Predict Outcome. J Clin Oncol. 2016 Aug 10;34(23):2690-7. doi: 10.1200/JCO.2016.66.4482. Epub 2016 Apr 11. PMID: 27069084; PMCID: PMC5019753.
- Goodman AM, Piccioni D, Kato S, Boichard A, Wang HY, Frampton G, Lippman SM, Connelly C, Fabrizio D, Miller V, Sicklick JK, Kurzrock R. Prevalence of PDL1 Amplification and Preliminary Response to Immune Checkpoint Blockade in Solid Tumors. JAMA Oncol. 2018 Sep 1;4(9):1237-1244. doi: 10.1001/jamaoncol.2018.1701. PMID: 29902298; PMCID: PMC6139049.
Do you have a Gestational Trophoblastic Disease (GTD)?
Have you been diagnosed with SCCOHT which is Small Cell Carcinoma of the Ovary--hypercalcemic type?
If you have any of the above cancers, please talk to your oncologist about the open cohorts in the clinical trial of Nivolumab and Ipilimumab in Rare Tumors (the "DART" trial, the first federally funded NCI dual immunotherapy trial).
Many hundreds of trial sites will have openings in each of these three cohorts. Questions? Please us know:
Join the growing community of PD-L1 Amplifieds! ThePDL1Amplifieds@askican.org
Know Your Precise Cancer Diagnosis
If your oncologist cannot tell you what molecular subtype of cancer you have, then you may not have a specific diagnosis yet. And your surgical or biopsy tissue might not have been adequately profiled if your physician did not order comprehensive biomarker testing. Here's a pie chart, created by the brilliant Jacqulyne ("Jackie") Robichaux, PhD, member of the John V. Heymach, MD, PhD Laboratory and Assistant Professor at The University of Texas MD Anderson Cancer Center, which reveals the molecular subtypes of Non-Small Cell Lung Cancer. If you know your particular molecular subtype, treatment decisions will likely be more targeted. If comprehensive biomarker testing does not reveal a specific molecular subtype, then that's also important information for you and your oncologist to have.Expand Chart InfoGraphic or select (PPTX) (Text Only) (JPG)
ASCO 2021 - Visual Data
A visual exploration of data presented at ASCO 2021 Virtual Meeting—LARVOL VERI
Visit ICAN's special advocacy initiative and global coalition of 1000+ patients, care partners, oncologists, molecular profiling labs, and industry partners:
Working toward turning the rare diagnoses EGFR exon 20 insertions and HER2 exon 20 insertions--each found in 25 separate cancers--into chronic and maintenance diseases.
Federal Tax I.D.: EIN 86-0818253
This website provides information about ICAN® Personalized Medicine Cancer Case Navigation Programs, while it also describes the ICAN® multi-faceted mission, unique vision, and respected values. Intended for use by the general public. This site also offers more in-depth information for target populations who may benefit from ICAN® Program Services such as ICAN® patients, their caregivers and medical teams — along with those healthcare professionals and researchers who are involved with ICAN® medical and scientific councils.
The health news displayed on this site are chosen by our team of M.D.s, PhDs, and ICAN® President and CEO, who is an Affiliate Member of ASCO, the American Society of Clinical Oncology; AMP, the Association for Molecular Pathology; and AACR, the American Association for Cancer Research. Information contained herein is therefore not intended to substitute for or supersede any advice that a patient receives from his/her health professional and is not intended to compromise in any way the patient-physician relationship. ICAN® strongly believes that all medical decisions need to be made, via shared decision-making, by the patient and his/her medical team.