Blog — ALK POSITIVE

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.

Clinical TrialsKirk SmithNovember 5, 2024Clinical Trials, Amivantamab, Dr. Tejas Patil

Patient Spotlight: Rich Gopen Bridgewater, Massachusetts, USA

Patient Spotlight: Rich Gopen Bridgewater, Massachusetts, USA

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.

Patient StoriesKirk SmithNovember 5, 2024Rich Gopen, Patient Spotlight

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.

Clinical TrialsKirk SmithNovember 5, 2024Clinical 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

Clinical TrialsKirk SmithNovember 5, 2024Clinical 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.

ALK InternationalKirk SmithNovember 5, 2024ALKpositiv 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.

ALK Positive NewsKirk SmithNovember 5, 2024Sadia 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.

ALK Positive NewsKirk SmithNovember 5, 2024Katie Delaney

Recipe: One-bowl pumpkin bread with sunflower honey topping. By chef and fellow ALKie, Juli Posner

Recipe: One-bowl pumpkin bread with sunflower honey topping. By chef and fellow ALKie, Juli Posner

This pumpkin bread was such a huge hit on my Thanksgiving table years ago, that my family begins asking for it as soon as Fall begins.
I serve it with various jams, jellies and honey butter on my brunch tables too.

RecipesKirk SmithNovember 5, 2024Healthy Recipes, Juli Posner

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)

Clinical TrialsKirk SmithSeptember 19, 2024Clinical Trials, Radiation, Brain Metastases

Healthy Eggplant Stacks A recipe by chef and fellow ALKie, Juli Posner

Healthy Eggplant Stacks A recipe by chef and fellow ALKie, Juli Posner

If you think you don’t like eggplant this will change your mind.
This recipe has all the feels. Warm, cheesy, melty, straight from the oven. I make it with any ground meat I have on hand.
What’s also nice is that it’s baked and not fried. So you can have that second helping. You’ll want it.

RecipesKirk SmithSeptember 19, 2024Juli Posner, Healthy Recipes

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

ALK Positive NewsKirk SmithSeptember 19, 2024Suzanne 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.

ResearchKirk SmithSeptember 18, 2024ALK 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.

Patient StoriesKirk SmithSeptember 15, 2024Matt 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.

ResearchKirk SmithJuly 29, 202423andMe, Research

Gazpacho recipe by chef and fellow ALKie, Juli Posner

Gazpacho recipe by chef and fellow ALKie, Juli Posner

A cold tomato-based soup originating from the Andalusia region of Spain, Gazpacho is as fun to say as it is to make. A mixed medley of vegetables and herbs, it carries numerous health benefits too!

My recipe is a bit of a cheat…because you don’t need a peeler, and barely a knife, and that's only to add garnish at the end.

Recipes, NutritionKirk SmithJuly 16, 2024Recipes, Juli Posner

Patient Spotlight Amanda Bialack-Stewart Los Angeles, California, USA

Patient Spotlight Amanda Bialack-Stewart Los Angeles, California, USA

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.

Patient StoriesKirk SmithJuly 16, 2024Patient Spotlight, Amanda Bialack-Stewart

Camidge Tumor Markers: Blood Testing for Anticipation of ALK Positive Progression, Monitoring Ongoing Recurrence, and Tracking Treatment Effect.  My Personal Experience.

Camidge Tumor Markers: Blood Testing for Anticipation of ALK Positive Progression, Monitoring Ongoing Recurrence, and Tracking Treatment Effect. My Personal Experience.

Those 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).

Research, Patient StoriesKirk SmithJuly 16, 2024Patient Spotlight, Jeff Sturm, Camidge Tumor Markers

Introducing ALK Positive Italia An interview with Founder, Patty Saccenti

Introducing ALK Positive Italia An interview with Founder, Patty Saccenti

ALK 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.

Patient Stories, ALK InternationalKirk SmithJuly 16, 2024ALK Positive Italia, Patient Spotlight, Patty Saccenti

Discovering Insights Beyond Clinical Trials: Exploring ALK-Positive Lung Cancer Treatment

Discovering Insights Beyond Clinical Trials: Exploring ALK-Positive Lung Cancer Treatment

Clinical 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.

Clinical TrialsKirk SmithMay 23, 2024Clinical Trials

Special series on “ALK-positive NSCLC” in the Translational Lung Cancer Research (TLCR) journal.

Special series on “ALK-positive NSCLC” in the Translational Lung Cancer Research (TLCR) journal.

About 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.

ResearchKirk SmithMay 23, 2024Research, TLCR