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LUNGevityKristin

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LUNGevityKristin last won the day on January 7

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About LUNGevityKristin

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    OVER 500 POSTS !
  • 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. Pillar Patient Advocates is seeking 8 participants for an online focus group formed to better understand the experiences of a patient and if/how they may go about deciding if they would consider a clinical trial. The focus group is on April 20th from 4:00-6:00 PM EST. Remaining openings are for 2 patients and their loved one/caregiver, who are currently enrolled in a clinical trial and 4 other patients who may or may not be in a clinical trial. All patients should not have actionable mutations (PDL-1 is okay), diagnosed within the past 12-24 months, and need to be Stage IIIB, IIIC or IV. All p
  2. It was Katie but happy it is here!
  3. Hi Steff, who is the drug manufacturer? You might be able to reach out to them for financial assistance.
  4. Welcome! Good luck at your first treatment. Thinking of you!
  5. Event alert: Modernizing Eligibility Criteria in Clinical Trials: How We Can Improve Patient Access and Representation, an ASCO-Friends Virtual Meeting. Friday, April 9, 2021, 1:00PM EDT - 2:00PM EDT https://friendsofcancerresearch.org/events/modernizing-eligibility-criteria#WhatFriendsDoes
  6. Hi

    Can "MET" be included in the "LUNG CANCER MUTATIONS" sub section? There are targetable treatments coming out for exxon14, amplification, skipping, etc. I have this mutation (i.e. MET amplification) and want to know if and when the FDA might approve one of the drugs that has been approved for the MET exxon or skipping mutation.

    Here is a link that substantiates my assertion: https://www.nejm.org/doi/full/10.1056/NEJMoa2002787

    thank you

    Jack Washburn

    1. jack14

      jack14

      PS That was the request that I sent to her.

    2. LUNGevityKristin

      LUNGevityKristin

      Hi Jack,

      Adding a subforum takes a little time but we are working on it.  Thanks!

  7. Paliative care is always a great idea. If there are ways to manage your symptoms, you shouldn't have to be in discomfort.
  8. Hi Jack, We can definitely create a MET section. It is a newer mutation and very rare and I don't think anyone had asked for it yet. I'll see what I can do!
  9. Hey @PCW, just checking in to see how you are doing. Thinking of you.
  10. Hi Rikki, Definitely mention the pain to your oncologist. It it is still related to surgery recovery, they may be able to give you some options so you don't have to suffer.
  11. Sending a gentle hug. We are all sending you our love and support!
  12. Just wanted to let you guys know that we constantly get new members and also people who come on as a guest. Just because you might not be seeing new users post or introduce themselves, doesn't mean they aren't here. You are constantly helping others with lung cancer by sharing your stories whether you know it or not. Thank you all to contributing to this wonderful community. ❤️
  13. Hi there, I just wanted to share some information on EGFR treatments: https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/targeted-therapy Are they testing for more than EGFR? Comprehensive Biomarker testing is important because it tests for all biomarkers, not just the most common: https://lungevity.org/for-patients-caregivers/lung-cancer-101/diagnosing-lung-cancer/biomarker-testing Lung cancer treatments and breakthroughs are changing daily. There is no reason not to be hopeful. A lot of people live with lung cancer just like they would any other chro
  14. Thank you everyone for your replies. Would you be interested in speaking in more detail with one of my colleagues about your experiences? They will speaking with people early next month.
  15. LUNGevity is seeking to speak to a patient who has had difficulty obtaining access to comprehensive biomarker testing for their non-small cell lung cancer diagnosis. For example, would your insurance not cover it? Did your doctor not want to offer it? We would like to learn more about your experience as part of our advocacy work on increasing access to biomarker testing. There may be opportunities to share your experience with others and for possible awareness opportunities. Thank you!
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