Meet Jamie, one of our international group members and an active volunteer for ALK Positive. Jamie was interviewed about his journey with lung cancer, sharing how volunteering for a purpose that can improve outcomes for our members worldwide has helped him see his diagnosis in a different light.
Read MoreEDITORS NOTE: big thank you to both Dr. Vincent Lam for spending his Sunday evening with our group answering these questions and sharing his vast wealth of knowledge. A special thanks to Marc Rosenzweig for creating and scheduling the ALKtALK programs and to Alice Chou for graciously committing her time to transcribe this ALKtALK so that it would be available for other ALK patients. Knowledge is power!
Read MoreOver the years, in conversation with many ALK caregivers, the Cambridge dictionary definition of caregiver seemed more appropriate. Cambridge states caregivers are the ones that worry about the future and worry about the past and worry about the present. Is this you?
Read MoreThe hot phrase in cancer treatment is immunotherapy right now. What does it mean for ALK+patients? Sometimes, you hear that immunotherapy does not work? But why are we trying to fund and are funding vaccines? Don’t vaccines work with the immune system? This short summary is to clarify these questions for you.
Read MoreA common problem we face is that cancer becomes resistant to our TKIs (Crizotinib, Brigatinib, Alectinib, Ceritinib, and Lorlatinib) over time. There are two known mechanisms so far for resistance. One is for the cancer cells to activate an alternative bypass pathway such as EGFR, cMET, KRAS, or AXL to allow cancers to continue to grow.
Read MoreAs of July 2021, there are at least 45 clinical trials that are recruiting specifically for people with ALK-positive lung cancer. Many of these trials have multiple sites worldwide. Since ALK-positive lung cancer is a rare disease, it is difficult for any one oncologist to be aware of all the trials available. You can advocate for yourself and find a clinical trial that may be a good fit for you at any juncture in treatment.
Read MoreThe 2021 ALK (virtual) Summit is going to be packed with terrific speakers such as keynote speaker, Teresa Graham, Head of Global Product Strategy with Roche Pharmaceuticals and Tasneem Ahmed, Global Diagnostics Director - both will be speaking on where ALK is going and the HOPE we have for the future (with Q&A)!
Learn how to tell your story with an impact!
Motivational Speaker and Author, Dr. Dennis Rebelo and Former NFL player and Lung Cancer Advocate, Chris Draft will lead a session on how to tell your story for advocacy and fundraising.
Let’s talk about the basics of ALK Genetics. Imagine you are back in high school and your science teacher is going over a biology lesson. Everyone is made up of cells, LOTS of cells. Inside the cells, there is DNA that is coiled into a superstructure called chromosomes. Scientists estimate we have about 30,000 genes in each cell. DNA is composed by nucleotides. Each nucleotide consists of three components:
Read MoreA big thank you to both Dr. Dr. Benjamin Levy and Nurse Practitioner, Rasheda Persinger for spending their Sunday evening with our group answering these questions and sharing their wealth of knowledge. A special thanks to Marc Rosenzweig for creating and scheduling the ALKtALK programs and to Alice Chou for graciously committing her time to transcribe this ALKtALK so that it would be available for other ALK patients.
Read MoreHydration talk. When I am sick, I always seek out a bowl of “chicken noodle soup.” In every culture, there’s always something soothing, whether it is a stew, soup, or something more substantial when you are feeling down. It works because these types of food can give you the essential nutrition you need when you are fighting an illness.
Read MoreDr. Justin Gainor & Dr. Aaron Hata at ALKtALK at our recent ALKtALK
Read MoreIn this newsletter, we are celebrating milestones. A cancer diagnosis (even at stage IV), while devastating, can often open up new doors and lead patients to a new calling in life. We interviewed Shyreece who has written and published two books; Juanita who has become a foster parent together with her husband; and Cori who found the love of her life and got engaged to him
Read More“Faith and the love of my family drive my will to live. Research and science give me the tool to do so! Thank you, ALK Positive community, for all you’ve done to help me reach my second cancerversary!”
Read MoreWhat is real world data vs. on-paper data? Scientists create experiments in laboratories and present the best data they can in published papers for everyone to share. That’s paper data. In real life, clinical doctors prescribe the medication and the end results for people are the real-world data.
Read MoreA new ALK inhibitor starts its clinical trials this month! TPX-0131 is an TKI ALK inhibitor designed to overcome multiple ALK resistance mutations. This first-in-human trial for ALK-positive lung cancer is now recruiting near Perth, Australia. Other sites for the FORGE-1 trial will be added in Australia and the U.S. over the next few months.
Read MoreIt’s important that we generate our own hope throughout the challenges and difficulties of ALK+ NSCLC.
Oh yes, there is plenty to be hopeful about on the research and treatment fronts. The news about next-generation TKIs, chemotherapy, vaccines, a variety of promising trials; all give credence to the case for much longer survival than ever.
Read MoreMay is Lung Cancer Hope month and ALK Positive, a patient-led non profit organization and community, is raising awareness and funds for groundbreaking ALK Positive Lung Cancer research. Join the wALK Positive Challenge and pledge to walk 10,000 steps for 10 days,
Read MoreDr. Jessica Lin and Dr. Ibiayi Dogogo-Jack explain their new clinical trial combining Lorlatinib with a SHP2 inhibitor, TNO155.
Read MoreEnsartinib (x396) is a medicine made by Xcovery, a biotech company based in Florida. It works closely with another company called Betta Pharmaceuticals in China for many of its trials. Currently, there is an eXalt3 (phase 3) clinical trial to compare Ensartinib against Xalkori (not currently recruiting).
Read MoreA special thanks to Marc Rosenzweig for creating and scheduling the ALKtALK programs. Alice Chou graciously committed her time to transcribe thisALKtALK with Dr. Awad and Dr. Chiarle so that it would be available here for other ALK patients. A big thank you to both Dr. Awad and Dr. Chiarle for spending their Sunday evening with our group answering these questions.
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