Patient Spotlight: Dana Querido, West Chester, Pennsylvania, USA
Patient Spotlight: Dana Querido, West Chester, Pennsylvania, USA

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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Patient StoriesKirk SmithPatient Spotlight, Dana Querido, Healing Arts
Introducing ALK Positive UK: Founded by Debra Montague
Introducing ALK Positive UK: Founded by Debra Montague

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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ALK InternationalKirk SmithALK Positive UK, Debra Montague
Palliative Care for ALK-Positive Lung Cancer: Research Identifies a Vital Resource for Improving Quality of Life
Palliative Care for ALK-Positive Lung Cancer: Research Identifies a Vital Resource for Improving Quality of Life

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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Clinical TrialsKirk SmithClinical Trials, Palliative Care
A Patient’s Experience of The Thoracentesis Procedure (Pleural Effusion tap, Thoracentesis, removal of excess fluid from the chest)
A Patient’s Experience of The Thoracentesis Procedure (Pleural Effusion tap, Thoracentesis, removal of excess fluid from the chest)

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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Patient Stories, ResearchKirk SmithThoracentesis, Jeff Sturm
My Family’s Favorite Oven-Baked Brisket: By Chef and fellow ALKie, Juli Posner
My Family’s Favorite Oven-Baked Brisket: By Chef and fellow ALKie, Juli Posner

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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RecipesKirk SmithRecipes, Juli Posner
Amivantamab With Tyrosine Kinase Inhibitors (TKIs) for Advanced NSCLC With ALK, ROS1, or RET Alterations
Amivantamab With Tyrosine Kinase Inhibitors (TKIs) for Advanced NSCLC With ALK, ROS1, or RET Alterations

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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Clinical TrialsKirk SmithClinical Trials, Amivantamab, Dr. Tejas Patil
Phase II Clinical Trial NCT05384626 by Nuvalent, Inc. A Study of NVL-655 in Patients with Advanced NSCLC and Other Solid Tumors Harboring ALK Rearrangement or Activating ALK Mutation (ALKOVE-1)
Phase II Clinical Trial NCT05384626 by Nuvalent, Inc. A Study of NVL-655 in Patients with Advanced NSCLC and Other Solid Tumors Harboring ALK Rearrangement or Activating ALK Mutation (ALKOVE-1)

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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Clinical TrialsKirk SmithClinical Trials, Nuvalent, NVL-655, ALKOVE-1
ALKOVE-1 Study Results Summary: NVL-655’s Promising Role in Treating Advanced ALK+ Lung Cancer
ALKOVE-1 Study Results Summary: NVL-655’s Promising Role in Treating Advanced ALK+ Lung Cancer

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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Clinical TrialsKirk SmithClinical Trials, ALKove-1, NVL-655
Introducing ALKpositiv Deutschland (Germany) An interview with Sabine Hatzfeld & Nicoline Ehrhardt
Introducing ALKpositiv Deutschland (Germany) An interview with Sabine Hatzfeld & Nicoline Ehrhardt

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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ALK InternationalKirk SmithALKpositiv Deutschland, advocacy
MEET YOUR STAFF: Introducing Sadia Yaakov, Medical Project Manager at ALK Positive, Inc
MEET YOUR STAFF: Introducing Sadia Yaakov, Medical Project Manager at ALK Positive, Inc

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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ALK Positive NewsKirk SmithSadia Yaakov
MEET YOUR STAFF: Introducing Katie Delaney, Philanthropy Operations Manager at ALK Positive, Inc.
MEET YOUR STAFF: Introducing Katie Delaney, Philanthropy Operations Manager at ALK Positive, Inc.

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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ALK Positive NewsKirk SmithKatie Delaney
ALK Clinical Trials September 2024: Should Brain Metastases be Treated with Radiation at Diagnosis in ALK+ Lung Cancer? Research About a Crucial Question
ALK Clinical Trials September 2024: Should Brain Metastases be Treated with Radiation at Diagnosis in ALK+ Lung Cancer? Research About a Crucial Question

For those facing the challenging diagnosis of ALK-positive lung cancer, brain metastases often pose a serious concern. Research reveals that up to 40% of these patients have brain metastases right from the start. This sets the stage for a critical question in treatment planning: Is it better to tackle these brain metastases with spot radiation, or stereotactic radiosurgery (SRS)

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Clinical TrialsKirk SmithClinical Trials, Radiation, Brain Metastases
Introducing ALK Positive, Inc. Executive Director, Suzanne Houssainy
Introducing ALK Positive, Inc. Executive Director, Suzanne Houssainy

Suzanne Houssainy was unanimously chosen by the Board of ALK Positive, Inc. for the role among over 300 candidates, many of whom were truly exceptional. We feel that the long, solid experience and professionalism Suzanne brings to the table is going to help our organization get to the next level. Suzanne has over 25 years of experience in sales, management and leadership positions in both the for-profit and the nonprofit worlds

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ALK Positive NewsKirk SmithSuzanne Houssainy
MEET THE PATIENTS WHERE THEY ARE: a new perspective on translational research in the field to accelerate precision oncology
MEET THE PATIENTS WHERE THEY ARE: a new perspective on translational research in the field to accelerate precision oncology

Team members of the Judith Tam ALK Lung Cancer Research Initiative ventured out to Nashville on July 18th for the 2024 ALK Positive Summit, to embark on an unprecedented research blood collection which took place July 19th and 20th. This was the culmination of 5 months of intense visioning with ALK Positive, Inc and sculpting of every detail of the whole process.

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ResearchKirk SmithALK Summit, Judith Tam ALK Lung Cancer Research Initiative, University of Michigan, Research
Patient & Care Partner Spotlight: Matt & Stephanie McAvin, St Louis, Missouri, USA
Patient & Care Partner Spotlight: Matt & Stephanie McAvin, St Louis, Missouri, USA

Matt and Stephanie Mcavin were recently featured in Genentech’s Biomarker Testing Campaign that was filmed during the ALK Summit in Nashville. We interviewed them about their story living with an ALK+ cancer diagnosis, juggling Matt’s diagnosis with caring for their family of three teenagers, and their advocacy in getting the word out on the importance of biomarker testing.

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Patient StoriesKirk SmithMatt Mcavin, Stephanie Mcavin, Patient Spotlight, Caregiver
ALK Positive joins 23andMe to Launch Lung Cancer Genetics Study to Advance Research
ALK Positive joins 23andMe to Launch Lung Cancer Genetics Study to Advance Research

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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ResearchKirk Smith23andMe, Research