We interviewed Amanda Bialack-Stewart about her unusual story with ALK+ lung cancer (having been diagnosed right after giving birth to twins at the age of 36), how she manages to balance family, work, fun, and self-care as a patient, and her active involvement in ALK Positive, Inc through creating and leading the Young ALKies Group.
Read MoreThose of us lucky enough to have Dr. Camidge as part of our care team have been encouraged to follow these tumor markers. Colin Barton, founder of the ALK Positive Medical Committee, has been doing so since 2018. LabCorp currently tests for these markers as part of my regular blood draws, and insurance pays for it. Presumably other diagnostic and insurance companies will do the same. The four markers are CEA (carcinoembryonic antigen/colorectal cancer), CA125 (ovarian), CA19.9 (pancreatic), and CA27.29 (breast).
Read MoreALK Positive, Inc has introduced a section in our newsletter to feature international (non-US) ALK patient groups/organizations. If you would like your group/organization to be featured in a future newsletter, please contact Duncan Preece at duncan.preece@alkpositive.org
In this issue, we are introducing ALK Positive Italia and have interviewed the founder, Patty Saccenti.
Read MoreClinical trials are the gold standard for evaluating new treatments in medicine. They offer a structured approach, where patient groups are carefully selected, treatments are administered, and results are meticulously followed over time. This controlled environment allows for a deep understanding of how treatments perform in specific patient populations, free from the confounding factors that might skew results.
Read MoreAbout two years ago (before Dr. Ken Culver was hired as ALK Positive Inc Director of Research and Clinical Affairs, and Colin Barton was still leading the ALK Positive Inc Medical Committee), Colin received an email from Dr. Justin Gainor and Dr. Jessica Lin from Massachusetts General Hospital, inviting ALK Positive Inc to contribute to a special series on “ALK-positive NSCLC” for the Translational Lung Cancer Research (TLCR) journal.
Read MoreCan you share with our readers the founding story of the ALK Positive Australia? What inspired the establishment of the organisation.
I, like many others, including the other founders, felt at initial diagnosis that it was difficult to find local, relevant information about ALK+ Lung Cancer and I was dubious of heading to Facebook for answers. Australia unfortunately does not have a dedicated Lung Cancer body despite Lung Cancer remaining the cancer with the highest mortality rate of all cancers in the country. Instead, we have Cancer Australia, Lung Foundation Australia, Cancer Council Australia and Rare Cancers Australia.
Read MoreThis trial is for patients with Stage 4 ALK positive NSCLC that have progressed on an earlier generation ALK TKI AND lorlatinib, and on any number of other standard-of-care or trial treatments. The trial drug is gilteritinib (aka Xospata), which was approved by the FDA in 2018 for a type of leukemia, but has been shown to have activity against ALK NSCLC in patient-derived models (mice with transplanted human cancer).
Read MoreWhen we think of Superfoods, chickpeas are not necessarily what comes to mind, but chickpeas have many surprising health benefits. They contain important vitamins and minerals (B, B6, folate and vitamin E), they have protein, lots of fiber, and all that fiber may actually keep you feel fuller longer, keeping your weight in check.They are also gut healthy and heart healthy. You can roast them, puree them, and add them to soups and stews.
Read MoreCAMBRIDGE, Mass., May 16, 2024 /PRNewswire/ -- Nuvalent, Inc. (Nasdaq: NUVL), a clinical-stage biopharmaceutical company focused on creating precisely targeted therapies for clinically proven kinase targets in cancer, today announced that the U.S. Food and Drug Administration (FDA) has granted breakthrough therapy designation (BTD) to NVL-655 for the treatment of patients with locally advanced or metastatic ALK-positive non-small cell lung cancer (NSCLC) who have been previously treated with two or more ALK tyrosine kinase inhibitors (TKIs).
Read MoreMarc Muskavitch is an ALK patient, Board member for ALK Positive, Inc., and one of the leading members of the ALK Positive Medical Committee. We interviewed him on his journey with ALK+ lung cancer so far, his work with the Medical Committee, and what most excites him about the future of ALK+ cancer treatments and collaborations to improve outcomes for ALK patients.
Read MoreBreak Through Cancer announces a new partnership with ALK Positive Inc. (ALK Positive), a foundation funded by patients with ALK-positive lung cancer and their families. ALK Positive and Break Through Cancer are joining forces to fund a new initiative in lung cancer research with the hope of creating durable responses and cures for patients with ALK-positive lung cancer.
ALK Positive is the first foundation partner to commit funding to Break Through Cancer for the initiative. Jointly, they hope to inspire other foundations, individual donors, and industry partners to join them as they work to build a coalition to support this life-saving effort.
Read MoreIn the ever-evolving arena of ALK-positive cancer therapies, clinical trials offer patients not only cutting-edge interventions but also a chance to contribute to the advancement of ALK cancer treatment. In examining international ALK cancer trials, we uncover both challenges and opportunities for those seeking innovative treatments beyond conventional options.
Read MoreThis stuffed flounder is a mix of flaky white fish and a creamy delicious filling, easy to make for anytime but special enough to serve if you have company.
INGREDIENTS: 6 flounder filets of even thickness, apx. 6 oz. each ; Old Bay Seasoning ; 1 tsp. olive oil
Editors Note: This interview is by Juhi Kunde, Director of Patient Gateways and Science Marketing at LUNGevity and was orginally posted on their web site on March 5, 2024. Dr. Angel Qin, MD, medical oncologist at the University of Michigan and one of the recipients of our ALK Positive Lung Cancer Research Awards. ALK Positive, Inc. collaborated with LUNGevity to support this very important work with the ALK Positive, Inc / LUNGevity ALK-Positive Lung Cancer Research Awards.
Read More1. Tell us a little about your background - personal and professional - and your journey with ALK+ lung cancer so far.
I am a 61-year-old French citizen of Chinese origin, now living in Paris. Beforemy diagnosis, I was living in Chiangmai, a northern city of Thailand, in semi-retirement after a very fulfilling career successively in the French Foreign Service, International Energy Agency (IEA), global energy companies BP and Equinor, and Chinese energy company ENN. Before COVID, I spent 17 years in Beijing where I worked for the aforementioned companies as senior executive.
Read MoreCan you share with our readers the founding story of ALK Positive Denmark? What inspired the establishment of the organization? ALK Positive Denmark, founded on October 6, 2022, stands as a dedicated advocacy group for ALK-positive lung cancer patients and their families. The genesis of this initiative can be traced back to Heidi Vaarbjerg, who recognized the need for a support network for Danish patients facing ALK-positive lung cancer.
Read MoreI started on the Phase II NVL-655 trial on March 1st, 2024, at UC Davis’s Sacramento campus, a seventy-five-mile ride from my house. I had pre-registered with Dr. Jonathan Riess’s trial coordinator in December, sending records from my oncologist electronically, and answering a lot of questions. They wanted a record of my initial cancer, and details on the mutations that came up with various progressions, along with all the dates. The current mutational profile was most important to the doctor for qualification to participate. My local oncologist knew Dr. Riess personally, which helped, I think, and having your oncologist touch base with a prospective trial-coordinating doctor can help open the door.
Read MoreYou might be surprised to know that at the end of my busy personal chef workday cooking for others, I rarely spent any time or energy making a delicious meal for myself. This is why I love slow cookers!!! This stew can also be made on the stovetop if you have time to spare, but for busy people like me a slow cooker can’t be beaten!With its quick prep and easily accessible ingredients, by the end of the day (or overnight) you have a delicious, rich, cozy beef stew packed with nourishing vegetables and tender beef.
Read MoreParticipating in a clinical trial can provide hope for those with ALK-positive lung cancer, offering a glimpse into the realm of cutting-edge treatments. Understanding eligibility criteria can be paramount for those seeking to participate in a clinical trial. Here we will highlight some of the opportunities and challenges of clinical trial eligibility
Read MoreI’m writing this on the return flight from the University of Michigan, where I underwent a thoracic biopsy for three lymph nodes that have been lighting up in my recent PET scans. As I am the ALK Positive patient advocate on the Judith Tam ALK NSCLC Research Initiative Scientific Advisory Board, l thought I’d do a trial run and see if going there for my biopsy and tissue testing would be worthwhile.
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