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ALK+ Blog/News

  • ALK patients with hight PD-L1 expression and immunotherapy

    Many of our members are wondering if immunotherapy with current checkpoint inhibitors may be a good idea for them if they have been diagnosed with a high PD-L1 expression. Spoiler alert: it is a bad idea for most. Read on to find out why. Using immunotherapy with checkpoint inhibitors has invigorated the treatment and hopes…

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    Side effects compliation & comparison

    IMPORTANT: This table is a list of various side effects members have shared.  Please remember, this is NOT a medical document.  Please use it as a guide and a starting point.  Please consult your medical team for specific advice!  Please open the PDF for the full compilation AUTHOR: Alice Chou

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    ALK-positive clinical trials & interview with multi-clinical ALK trial participant, Hazel Senz

    Member Hazel Senz from Golden, CO shares her experiences from participating in multiple ALK clinical trials and how they have affected the course of her disease. Hazel Senz has been adjusting to the “new normal” of ALK-positive NSCLC for 6 years. She is out living life in Golden, Colorado, experimenting with new ways to enjoy…

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  • What is Leptomeningeal Disease and how is it treated?

    A number of our members deal with leptomeningeal disease (LMD) at some point in their diagnosis. Read more on what LMD is and how it is treated. What is Leptomeningeal Disease and how is it treated? Leptomeningeal disease (LMD) occurs when cancer cells migrate from the breast, lung, or other parts of the body to…

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  • ALK-positive lung cancer and Covid-19 Update

    Written 7.1.20 We’ve been living with COVID-19 for six months now and we know so much more, not only about this virus, but how it affects people living with lung cancer. ALK POSITIVE SUPPORT GROUP Members Host COVID-19 Q&A with DR. Lam In the beginning of June, our amazing members, Amanda Nerstad and Chel Gorombol,…

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  • Brain Metastasis Radiation Options

    Radiation Options to Treat Brain Metastasis: Quick Review of WBR, SRS, and SFRT Nieder et. al. wrote an easy to understand paper on the management of patients with brain metastases from non-small cell lung cancer and adverse prognostic features: multi-national radiation treatment recommendations are heterogeneous. The authors used data from 17 real patients to request recommendations…

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    Grapefruit & TKIs

    A Review: Interview with Dr. Lin, Does Grapefruit Interfere with TKIs? The interview with Dr. Lin covered topics that we should know about with regards to cytochrome P450 and its significance in processing TKI* medication. Cytochrome P450 is part of a system important in metabolizing medicine in the liver. Cytochromes metabolize oily (fat-soluble) chemicals so they…

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  • Patient Spotlight: Creating families after cancer

    Interviews with ALK Positive Members: Receiving a stage IV lung cancer diagnosis comes with a lot of decisions. If you are in your reproductive years (like many of our ALK-positive patients) but haven’t started one yet, there is one more big decision to make. Do you opt to start a family regardless? And if so,…

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  • How do ALK TKIs affect pregnancy?

    Studies on ALK TKIs* and Pregnancy In 2016, there was a study reported by Dr. Ibiayi et. al. (Dr. Shaw’s group) on patients who were pregnant or had just given birth to a child while diagnosed with NSCLC (non-small cell lung cancer) between 2009 and 2015.  They identified 2422 women with lung cancer of whom…

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  • Living your best life with lung cancer, a personal story

    Taking Control of My Legacy By Erika Hlavacek On September 29, 2017, I was diagnosed with Stage IV ALK Positive NSCLC. I was a 42 year old mom, former airline pilot, with a 9 year old daughter and a 7 year old son. I was physically in the best shape of my life and a…

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  • Juggling a young family while dealing with a cancer diagnosis

    When someone receives a cancer diagnosis, the entire family is affected.  In this quick review, we highlight several aspects of juggling a family while dealing with a cancer diagnosis.   What and how should we tell the kids?  How much should they be involved? Honesty is the best way to deal with a cancer diagnosis. …

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  • Lung Cancer Research Round Up: Brain Metastasis Radiation Options

    Radiation Options to Treat Brain Metastasis: Quick Review of WBR, SRS, and SFRT Nieder et. al. wrote an easy to understand paper on the management of patients with brain metastases from non-small cell lung cancer and adverse prognostic features: multi-national radiation treatment recommendations are heterogeneous.  The authors used data from 17 real patients to request…

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