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LUNGevityKristin

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Posts posted by LUNGevityKristin

    LIVE EGFR Q&A 5/24 at 12pm ET

    in EGFR

    Posted

    Hi everyone! Be sure to join Dr. Upal Basu Roy and Dr. Christine Lovly tomorrow, May 24th at 12pm ET for a special LIVE Q&A during the EGFR Resisters & Researchers webinar.  You can watch more information here: https://www.facebook.com/lungevity/videos/354509453442296/

    Be sure to head to the LUNGevity Facebook page at 12pm ET 5/24 to get your EGFR questions answered by the experts.  Please let me know if you have any questions or need additional information.

    Small Cell Diagnosis

    in INTRODUCE YOURSELF!

    Posted

    Hi D iane, sending you a big hug.  I agree with what LexiCat mentioned above.  You are always welcome here.  Your experience as a caregiver is so valuable to caregivers now.  We do have a LUNGevity Legacy Facebook Group for those whose loved ones have passed away from lung cancer: https://www.facebook.com/groups/51580140634/permalink/10165124375825635/

    And if you would like to advocate for lung cancer, there are many different ways you can get involved: https://lungevity.org/for-supporters-advocates

    Keeping you in my thoughts.

    Join the LUNGevity Action Network!

    in ADVOCACY

    Posted

    LUNGevity Action Network: A new way for lung cancer advocates to engage.

    https://lungevity.org/for-supporters-advocates/lungevity-action-network

    Our community needs to unite to bring about change for people affected by lung cancer. Now advocates can join the new LUNGevity Action Network to take action. Get involved and make a difference!  Through the Action Network, you will be equipped with the training, tools, and resources you need to amplify your voice and your impact. Whether you are interested in policy, raising awareness, or both, everything you need to be a successful advocate will be accessible, easy-to-use, and delivered right to your inbox!

    There is so much you can accomplish by signing up for the LUNGevity Action Network.

    POLICY

    Make your voice heard on the issues that affect the lung cancer community.

    • Learn about important issues
    • Sign petitions
    • Complete surveys
    • Comment on regulations and write your legislators

    AWARENESS

    Help educate, engage, and empower your community.

    • Create and share social media posts
    • Share your story via blog, at local events, and/or with local media
    • Distribute educational materials at your local hospital, clinical, or support group
    • Exhibit at local events (i.e. health and resource fairs, expos, conferences)

    It's always your choice whether to take the action; but the more you do, the greater your impact and the more you'll see how powerful your voice can be when combined with others like you.

    Questions? Reach out to action@lungevity.org.

    Biomarker Testing and Waiting for Results-What was your experience?

    in GENERAL

    Posted

    Biomarker testing results can take up to 4 weeks or longer for the provider and patient to receive. Ideally, treatment should not begin until you receive ALL biomarker testing results so that your doctor has a complete picture of your lung cancer, and can together develop the most appropriate care/treatment plan. However, for some people experiencing severe symptoms, starting treatment immediately may be necessary.

    LUNGevity would like to know about your experience waiting for your complete comprehensive biomarker testing results. What was that like? How long did you wait? What did your doctor tell you while you were waiting? Did you start on a treatment while you were waiting?

    Durvalumab

    in IMMUNOTHERAPY

    Posted

    On 11/20/2019 at 8:08 PM, Rower Michelle said:

    Hi Kate-

    Gosh, I’m so sorry to hear about the unrelenting Durva side effects.  To piggy back on the others perhaps there is a clinical trial available?  That’s where the GO2FOUNDATION can help find a match or Bridget’s recommendation for a second opinion might come in.  It’s worth pushing this issue over the just wait & see.  Keep us posted!  Hang in there.

    Michelle

    LUNGevity has a Clinical Trial Finder and can also match you with a Clinical Trial Navigator.  All of the information is HERE if you would like to go that route.

    Small Cell Diagnosis

    in INTRODUCE YOURSELF!

    Posted

    I'm sorry to hear that there are metastases.  If you or your husband would like to speak with someone one on one who is going through similar treatment, LUNGevity has a peer-to-peer mentoring program.  https://lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring  There is also the HELPLine https://lungevity.org/for-patients-caregivers/support-services/lung-cancer-helpline staffed by oncologist social workers that can offer support.  Both of these are free services.  If you have any questions, please let me know.

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