In 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.
Read MoreWe interviewed Dr. Sydney Barned - a medical doctor, ALK patient, and very active lung cancer advocate. We learned about her personal journey with ALK+ lung cancer, how lung cancer has also affected other members of her family, and, more importantly, her tireless involvement in lung cancer advocacy, some of which has already resulted in legislation being passed to help lung cancer patients
Read MoreWhen we decided to interview Summer Hall Farmen about her personal journey (that includes being a mom to an adult son with severe cerebral palsy), her journey with ALK-Positive lung cancer, as well as her active involvement in our organization (Board member, ALKtALK Healing Arts program, fundraising, and Summit Committees, to name a few), we didn’t realize we were in for another treat. Summer’s interview didn’t just give us a good glimpse of her own life. It also helped us get to know another prominent ALK member whose life is tightly connected with Summer’s life - her father and active member of the ALK Positive Medical Committee, Ray Hall. As we got to hear and learn more about this father-daughter duo and their partnership to give Summer the longest and best life possible as an ALK patient, we were reminded of the values of family, commitment, perseverance, dedication, and above all – love.
Read MoreThis comforting soup makes a delicious and savory soup that’s perfect for those cold busy nights in the Fall and Winter when butternut squash is also in season.
*feel free to substitute sweet pork sausage in this recipe if spicy isn’t your thing!
One pot - 30 minutes start to finish!
One of the challenges in our community has been the treatment of earlier stages of ALK-positive lung cancer, including stages IA through 3A. Historically, we've faced a lack of definitive guidelines for addressing the illness that represents 30-40% of the total ALK lung cancer population. Patients in these stages are traditionally treated with surgical tumor removal, followed by platinum chemotherapy. This treatment is a "one size fits all" approach to earlier stage lung cancer, without concern for the presence of the ALK mutation.
Read MoreThere was an excellent Q&A session with Dr. Schenk and Dr. Camidge at the 2022 ALK Summit in Denver. Colin Barton, (Member of our Medical Committee), has graciously taken the time to list the questions and times on the video recording that is available on our ALK Positive Youtube Channel.
Read MoreI love a bolognese sauce. It is generally an Italian meat sauce made with ground beef and pork, often even a bit of pancetta. I have made this slow simmered authentic bolognese substituting ground turkey for the beef and pork and it doesn’t miss a beat, its just healthier for you!
If you love an Italian inspired dish, this sauce will be one of your favorites. Great for pasta, lasagna, or even over zucchini noodles. Make extra. It freezes beautifully.
Read MoreALK Positive Europe (APEU) was founded in 2022 and has its origin in a Facebook group of European patient advocates who were supported in the beginnings by Gina Hollenbeck.
In Europe, there are several patient organizations and groups that advocate for ALK-positive patients limited to their own countries.
The size of these associations and groups varies greatly from country to country - from 25 to over 550 members.
Read MoreWe interviewed Ashley Sitorius, mother and caregiver of 11-year-old Deliah, who was diagnosed with ALK-positive brain cancer when she was just 7. ALK can actually appear in many pediatric cancers as a driver mutation. Among many things, we discussed Deliah’s (and the family’s) journey in navigating this devastating diagnosis, how she has been able to advocate for Deliah’s treatments (some of them not officially approved for pediatric cancer), and her future hopes for pediatric ALK cancer.
Read MoreThe spectrum of ALK-positive cancer knows no age limits. Meet the faces of courage: the ordinary individuals with the ALK-positive mutation. This mutation, notorious for lung cancer in adults, defies the stereotype. At just 52 years old, these fighters, who are usually non-smokers, shatter expectations. Yet, it doesn’t stop there – the youngest warriors, too, bear the burden of ALK-positive mutations. While a handful of kids battle ALK-positive lung cancer, an even greater number grapple with foes like lymphoma, sarcoma, and brain cancer, all stemming from the ALK-positive mutation.
Read MoreThis is my favorite Southern Beach Bake (even though I'm from the North). I’ve prepared this it for clients and family alike. It's great for the warm weather of summer, and it feeds a crowd. Cover the entire table with butcher paper or newspaper, set out some rolls of paper towels, some fun hot sauces, and mustards, some bowls for shells, and leave the utensils in their drawer. For this recipe we let everyone eat with their hands!
Read MoreThe ALK Positive NSCLC Research Acceleration Committee (RAC) systematically reaches out to selected biotech companies with NSCLC treatments in development and/or trial. In February of 2022, RAC member Ray Hall (father to patient Summer Farmen) wrote a letter to the CEO of Memgen Inc., introducing us and asking for a get-acquainted Zoom meeting, which occurred shortly thereafter. CEO Greg Brown, MD, MBA, and Chief Scientific Officer Mark Cantwell, PhD let us know that they were initiating a clinical trial at Duke and Moffit Cancer Centers for their oncolytic virus drug MEM-288 for patients with solid tumors
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