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LUNGevityKristin

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LUNGevityKristin last won the day on January 7

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About LUNGevityKristin

  • Birthday 09/30/1980

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  • City
    Chicago
  • US State (if applicable)
    ILLINOIS
  • Country
    United States
  • Gender
    Female
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    Not a patient

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  1. Hopefully everyone is signed up for the LUNGevity Action Network, but in case you aren't yet, here is the link: https://www.lungevity.org/public-policy/lungevity-action-network Public Policy and advocacy are a big part of what we do. If you sign up, you will receive action items right to your email.
  2. Hi everyone! Giving Tuesday is coming soon and I want to make a video featuring all of YOU to post on our social channels. The theme is research saves lives. If you would like to participate, please send me a close up (think head shot) photo of just you. For this project I would like just faces so no masks, props, etc. Also, if you would like, send me a sentence or two about how lung cancer research has impacted your life. The video will be a slide show style set to instrumental music just showing the faces of our community and asking people to donate to LUNGeivty for Giving Tuesday. Below is an expample with a stock photo. I will do all of the editing, I just wanted to show you how it would come together in the video. You can send photos and your quotes to [email protected] If you have any questions or need more information just let me know. Deadline to receive photos is end of the day Monday, November 22nd.
  3. Hello I’m new to this group. I’d like to know what people’s experiences have been with immunotherapy overtime to treat renal cell kidney cancer metastasized to the lungs. My condition is IMDC 2 points the mass I have is 1 cm current time. Cancerous kidney was removed in June and appears while it has not metastasized to the lymph nodes etc. and had all clean margins some cells probably escaped in blood stream and lodged in the lung. 

  4. Hi Chuck, like others have mentioned, LUNGevity has different types of support services for you and your wife. There are virtual meetups, one on one mentoring, these forums, Facebook groups, etc. Please check out all of them and if you have any questions, let me know. https://www.lungevity.org/for-patients-caregivers/support-services
  5. This week, LUNGevity Foundation is launching a brand-new initiative called Lung Cancer Patient Gateways. The concept is to provide a “one-stop shop” of information and resources for patients and caregivers navigating a lung cancer diagnosis. We will be creating a total of six (6) Patient Gateways, broken out by lung cancer biomarker or subtype, including KRAS, EGFR, ALK, Rare Mutations and Fusions (ROS1, RET, MET, NTRK, BRAF and others), non-small cell lung cancer (NSCLC) and small cell lung cancer (SCLC). The KRAS Patient Gateway launches October 27, 2021. In working with patients and caregivers over time, we have consistently heard about the need for a comprehensive site that gives patients and caregivers easy access to the things they value the most: up-to-date information about their particular type of lung cancer; the ability to quickly pinpoint where the leading experts are who specialize in treatment of their disease; convenient access to their electronic health record; information on clinical trials; the opportunity to connect with others navigating the same issues and participate in events within the community; timely news on the latest in research advances and other items that may be of interest. We were very intentional about the naming of this new resource. “Gateway” is actually defined as “an entry to a place.” As patients enter the “place” that is lung cancer, our primary goal was for each site to serve as an entry point to guide patients and caregivers in a purposeful way with the tools and information they need to navigate their own lung cancer experience. We felt strongly about putting everything in one place to make it easy to find and easy to use. In my role as Vice President of Global Engagement and Patient Partnerships for LUNGevity, I am particularly proud of what we have created and the value it adds for our community. I am especially excited to launch this overall effort with the KRAS Gateway, as it reflects the extraordinary scientific progress that has occurred over the last couple of years. It wasn’t that long ago that KRAS was considered an "undruggable" biomarker, a distinction it had held for over 40 years. But because of research advances, we now have a growing list of drugs that show promise for patients whose cancer is KRAS positive. I don’t know about you, but that fills me with great hope! What I hope you will find as you explore the new Lung Cancer Patient Gateways is a lot of information, a sense of community, and a feeling of empowerment. We want this to be an entry to a new way of thinking about lung cancer, one informed by the latest science, inspired by all the amazing communities that already exist and one driven by some of the latest innovations to bring you what you need when you need it most. We are in this “place” together. https://gateway.lungevity.org/
  6. Hi Cordelia, Triage Cancer has great resources for employment and disability. https://triagecancer.org/cancer-employment-work-rights
  7. Our next Caregiver Connection is THURSDAY! https://www.lungevity.org/for-patients-caregivers/support-services/virtual-meetups
  8. Oh Kathie, I'm so sorry. That is a lot. Do you have a referal for a new Oncologist? What can we do to help?
  9. Hang in there. Your brother is luck to have you supporting him. Here is a little about what you can expect with SCLC: https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/treatment-options/treatment-options-for-small How is your brother feeling after treament?
  10. Daphne, I'm so sorry for your loss. We are here to support you and send a big virtual hug. I just wanted to share some grief resources with you: https://www.lungevity.org/for-patients-caregivers/caregiver-resource-center/end-of-life-planning/grieving-loss If there is anything we can do to help, please let us know.
  11. Hi Joana, For financial resources, you can go here: https://www.lungevity.org/for-patients-caregivers/survivor-resource-center/additional-resources-for-survivors The Lung Cancer HELPLine can give additional resources 844-360-5864 And also drug manufacturers may have programs for free or reduced costs. Please do not hesitate to reach out to the Lung Cancer HELPLine, that's what they are here for!
  12. Welcome! I'm sorry you feel alone but we are here to support you. But we are not doctors and cannot give medical advice. First, here is Lung Cancer 101: https://www.lungevity.org/for-patients-caregivers/lung-cancer-101 It will give you lots of answers about next steps, biopsies, etc. Does the doctor want you to stop smoking because it could lead to surgical complications? Please be kind to yourself. You are going through a lot of stress right now. When the doctor told you your results wouldn't be ready for a few days they meant because they need to read them and interpret the results. Many patients prefer not to look in the portal because there is a lot of information that can look scary but really isn't anything to worry about. The doctor will help make sense of the PET scan findings. Do you have an appointment scheduled to go over them? Hang in there!
  13. Hi Kathie. I'm so sorry about your husband's progression. And I'm sorry you are feeling alone. Please join us at our next caregiver meetup Thursday, October 28th. I can't tell you how valuable it has been for loved ones of lung cancer patients and survivors to connect and support each other. https://www.lungevity.org/for-patients-caregivers/support-services/virtual-meetups Consider this your engraved personal invitation. We would love to see you there!
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