Hello, my name is Celeste Olinger. I’m called Mom by two adult children and am known as Popsicle Grandma to four grandchildren, with a new little one on the way. I’m a 66-year-old native Coloradoan that lives in the Denver metropolitan area. In my professional career I was employed by federal, state and local levels of government serving as a Congressional Staff/Aide, Public Information Manager, and Director of Communications and Community Outreach. Prior to my lung cancer diagnosis, I commuted to work in Columbia, Maryland
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ALK Positive France, founded in April 2021, stands as a dedicated advocacy group for ALK-positive and ROS1 lung cancer patients and their families. The creation of the French ALK association started from a meeting between French ALK Positive patients and caregivers in the international group of the US-based ALK Positive entity. French patients discussed that it was time to create a group in France to no longer leave patients alone and isolated.
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For those living with ALK-positive lung cancer, the search for new treatments feels like a race against time. When current therapies lose effectiveness, patients and their loved ones are left waiting for the next breakthrough. NVL-655, an experimental ALK inhibitor, is one of the most anticipated new treatments, designed specifically to overcome resistance mutations that develop after other ALK-targeted therapies.
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Histotripsy is a new form of sound wave radiation used for killing tumors from outside the body. The Histotripsy procedure is now FDA-approved for tumors in the liver and is covered by Medicare and some insurance companies. An estimated fifteen percent (15%) of ALK Positive NSCLC patients acquire liver tumors during the course of their disease.
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BEETS! They add a natural sweetness, vibrancy and color to any dish. They pair well tossed with many greens like arugula, spinach or butter lettuce, but in this dish, they’re the star!Preparing beets is also as easy as baking a potato. Let’s go!
Directions: Roast 2-4 medium sized beets in foil in a 400-degree oven for about 1 hour.
When they are cool enough to handle, remove the skins and dice into bite size chunks.
ATLANTA, February 20, 2025 – The ALK Positive organization stands with patients, families, healthcare providers, researchers, and the broader medical community in our mission to increase survival for those at risk, diagnosed, and living with ALK-positive cancer.
We are deeply concerned with the devastating impact that severely and suddenly reducing the budget of the National Institute of Health (NIH) will have on medical research across our country. The termination of employees at the Food and Drug Administration (FDA) and the NIH, as well as limiting indirect costs for scientific grants, will impede critical scientific advances that ALL cancer patients need – ultimately endangering public health.
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Dear Senator (or Congress woman/man) XXXXX,
As one of your constituents from XXXXXX, I wanted to let you know that I am deeply concerned about the current administration’s funding cuts to NIH. For the past XXX years I have been living with stage 4 lung cancer – ALK positive – a subtype that has FDA approved drugs that will keep the cancer in remission for a period of time, but not forever.
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ATLANTA, GEORGIA, 30 JULY 2024 – ALK Positive, in collaboration with 23andMe Holding Co., a leading genetic health and biopharmaceutical company, and 20 lung cancer advocacy organizations, today announces a new study to help advance research in lung cancer. The focus of the Lung Cancer Genetics Study is to better understand the genetics of people with lung cancer in order to improve detection.
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We interviewed patient and ALK Positive volunteer Dana Querido about her journey with ALK+ lung cancer and her active involvement with the ALKtALK Healing Arts, Death Cafe, and more.
“I feel everyone should join at least one of the Healing Arts offerings. I joined within days of hearing I was ALK-positive and it was the best thing I did. The Healing Arts Zooms were only a few months old, but I did not know this at the time. It let me know I was not alone. A sense of community helps you emotionally, mentally and physically.”
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Debra Montague was diagnosed in October 2016 and joined the world-wide ALK Positive Facebook support group. She came to realise that there was a need for a UK group to address issues that are specific to UK patients, e.g. the National Health Service, the Driving Licence Regulator and the Drugs Approval Regulator. In July 2018, she gathered together 18 UK patients, and a charity was formed in December of that year.
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For individuals diagnosed with ALK-positive lung cancer, the mention of palliative care can often lead to confusion or misunderstanding. Many wonder: Why is palliative care recommended? How does it fit into my treatment plan? Do I need it now, or is it something to consider later? Let’s look at the research and explore how palliative care can enhance quality of life for those with ALK-positive lung cancer.
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During the Thanksgiving holiday, over a liter of pleural fluid was withdrawn via needle from my right chest space. I had just finished my third cycle of Carboplatin, Pemetrexed, and Lorlatinib after almost ten years of TKIs alone. The fluid first became evident on a PET scan and was classified as moderate effusion. I didn't even know it was there but felt substantial relief when they took it out. Breathing is much easier and the pressure is gone.
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I’m sure there are a lot of people in many parts of the country that wouldn’t dream of making a brisket in the oven. But growing up in New York on Long Island, we never owned a smoker.
I think once you try this virtually fuss-free, oven-baked method, you will be sold by how delicious it is. Don't be afraid of the wacky combination of ingredients. I promise it works. It can be made two days ahead for best results!!
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Who is this trial for: This trial is for patients with one of three forms of non-small cell lung cancer (NSCLC) – ALK, ROS1, or RET - who are progressing on their current TKI under certain conditions, and are willing to try an experimental drug combination in order to extend the life of their current TKI. Amivantamab is a bi-specific antibody targeting the cell survival pathways MET and EGFR. The trial may be most appropriate for patients who are progressing without a targetable mutation or clearly identified driver of their cancer growth.
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Rich Gopen is an ALK patient and one of our match donors this Lung Cancer Awareness Month (LCAM), which means that whatever funds you donate or raise will be doubled thanks to Rich’s and others’ generous match donations. We interviewed him about his journey with ALK+ lung cancer, what motivates him, and his hopes for the future.
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Who is this trial for: NVL-655 is a 4th generation, brain-penetrant, ALK TKI inhibitor created to overcome several limitations observed with currently available therapies. NVL-655 is designed to have activity in tumors that have developed resistance to first, second, and third-generation ALK inhibitors, including tumors with the solvent front G1202R mutation or compound mutations G1202R/L1196M (“GRLM”), G1202R/G1269A (“GRGA”), or G1202R/L1198F (“GRLF”). In other words, it is for patients for whom other ALK TKIs have failed under certain conditions.
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The clinical results from the Phase 1 portion of the ALKOVE-1 study is bringing new hope to patients with ALK-positive lung cancer, especially those who have exhausted other treatment options. NVL-655, a fourth-generation ALK inhibitor, has shown unique effectiveness in overcoming resistance to previous treatments, including those with brain metastases and specific resistance mutations
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In recent years, the German patient network, ALKpositiv Deutschland, has become an important point of contact for patients with ALK-positive lung cancer in German-speaking countries. Our story began in 2019 with a Facebook group that served as a platform for those affected to exchange information. From the outset, this group was an important place to find out online about diagnoses, therapies, side effects and current research updates, and to provide mutual support.
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I was born and raised in Pennsylvania and had an interest in cancer research from the time that I was a child. I was exposed to Fox Chase Cancer Center very early on and knew from that moment that I wanted to do something to help in the fight against cancer. I attended University of the Sciences in Philadelphia for both my undergraduate and graduate degree as the school had a strong emphasis on the sciences and health professions.
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With over a decade of entrepreneurship and management experience, I’ve learned one enduring truth: obstacles become opportunities when met with hard work and dedication. Believing that anything is possible with perseverance and self-belief, I’ve discovered that the greatest gift is empowering others to believe in themselves as well.
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