Emily, Voice of the Patient

Emily was called upon by Bonnie J. Addario of the Lung Cancer Foundation to present the patient perspective at the AACR – IASLC International Lung Cancer Conference. Emily told the story of her nationwide search for a curative treatment and of her fight and determination to survive.  At the end of her speech, she addressed the room – filled with the world’s leading lung cancer specialists and researchers – and called upon them to treat their patients individually and aggressively in their fight to survive.

Prior to Emily’s talk, as word spread through the lung cancer patient community that she would be a conference panelist, there was an exciting buzz.  Patients often feel unheard by their doctors, trapped by the standard of care, and are left feeling hopeless.  Emily’s speech gave patients a voice.

The audience’s response at the conference was overwhelmingly positive.  Researchers told Emily that she helped remind them of why they spend so many countless hours in the lab.  Oncologists were equally enthusiastic, and she hopes that her message struck a chord and influences future treatment patterns. Other participants requested that Emily speak at upcoming events, including the esteemed IASLC World Conference (where attendance is expected to be 9,000)!

Below is the video of Emily’s speech.  I urge you to take the time to watch it.  I am so proud of her as she has taken on this next challenge in lung cancer patient advocacy. After an exhaustive personal battle to survive, she is courageously and energetically taking on the universal war against lung cancer.  We will need our army with us for this new challenge, and we thank you in advance for your continued support.  Are you with us?

Much love. Live in the moment.

Miles (and Emily)

13 thoughts on “Emily, Voice of the Patient

  1. Hi Emily,
    I’m a 41 yo mom of two young kids. I was just diagnosed with with Stage IV NCSLC one month ago. I have started chemo and am learning as much as fast as I can. I found Inspire.com, and then Tori (because we’re both ROS1), and Tori pointed me to your blog. I just watched your video, and it truly did inspire me. I love my family so much. I am fit, healthy and relatively young, but last week, on day 10 of horrible nausea from round 2 of cisplatin/avastin/alimta I found myself wondering how I was going to make it through 4+ more rounds of this and who knows what after that. Hearing what you fought through, I know I can do this. I must and I will. And, I will push my MD harder, too; let her know I’m willing to do whatever it takes and that I expect her to help me do so.
    Just thought you’d want to know – you’re having an impact in ways and on people you may never have imagined. Thank you.
    – Lisa Goldman

  2. Hi Emily, I was 27 when diagnosed (with a carcinoid) last June and underwent a RUL in NYC (at Memorial Sloan Kettering). Your speech was incredibly inspiring to me and I wanted to thank you so much for being an advocate and for sharing your story here and on your blog!

  3. Emily,
    Thank you for your voice and your courage to speak for all those affected by this horrible disease. My husbands 1st Dr. was definitely not willing to go outside the standard of care box. After a specialist in Denver told us that if any new areas popped up in other areas of body we could radiate those areas and continue on current targeted therapy as long as it was still working on main area of disease. Her reply was “No , why would you do that? You are Stage 4, no cure. We would only do that for palliative care reasons.” So basically she said we will not fight for your life, only make you comfortable while you die. Needless to say, we don’t see that Dr. anymore. Thank you for telling the world your story and offering us all hope. You give me courage to speak up for my husband’s care.

  4. How beautiful you looked, how strong your message was, how in control you are emotionally. We are always with you and Miles:)

  5. Emily,
    My husband Mark was diagnosed in May of last year. He was 49 at the time and a life long non-smoker as well. We were totally shocked. His only symptom was a cough that wouldn’t go away. Fortunately his family doc did a chest X-ray right away, but misdiagnosed pneumonia. Two weeks later a repeat chest X-ray revealed the “spot” on his left lung hadn’t improved. That “spot” turned out to be an 8cm mass. There was also lymph node involvement. We went to Penn Medicine in Philadelphia for the biopsy and have remained there with the Abramson Cancer Center. The Pet scan showed mets in the spine and a brain MRI came back clear. A month later a second brain MRI showed 3 tumors. We were devastated. Still cannot believe he is stage IV.
    His tumor was tested and came back positive for the ALK gene. That was the best news! He is participating in a clinical trial since July 1st. Six pills a day! His brain is clear, his tumor has shrunk 90%! The bone mets are also healing.
    He was able to run the Bonnie J Adario 5k in Philly in the fall. He is amazing! My heroe!
    He has been asked to do some media stuff for Penn…video, tv commercial, a parade. It’s been great getting to get the word out there that lung cancer doesn’t discriminate.

    I am glad to hear how well you are doing. Mark gets scanned every eight weeks and the next set is on February 10th. We are praying we hear NED this time around. Thank you for sharing your story. It’s comforting if that doesn’t sound too weird.
    We will be praying for you.

    Kim Gettis
    Reading, Pa

    • Kim,
      Hi, My husband is 48 and was diagnosed last year with ALK gene mutation as well. He has been on crizotinib for the past 11 months but it is no longer working and he will be undergoing tests this week to see if he will be accepted into AR26113 trial. I was just wondering what trial your husband was on? I am so happy to hear that he has responded so well.

      • Rhonda….
        Mark has been on AP26113 since July 1st! I am going to pray that your husband is able to join the study as well. Mark is doing so well on this medicine! Of course, we have our ups and downs, but for the most part it has been mostly good. He even had 3 small brain tumors and in just 4 weeks on the medicine, the brain was clear. They scan him every 8 weeks, but when he first started, we had just found out about the brain mets and I asked the doc to please scan the brain at 4 weeks. The brain mets had cropped up so quickly, but were gone just as fast. I would love to talk to you….I have not come across anyone in my shoes and it’s hard sometimes. We are Christians and believe in the power of prayer. I call Mark our walking miracle! I can see so many instances over the last 9 months where God has been right there with us and I have chosen to walk this journey in faith and not in fear! Anyway….I am believing your husband will be able to start the trial. Please keep me posted!

    • Kim,
      My husband was accepted into trail and started this past Tuesday at University of Colorado in Denver. He was started at half the normal dose for one week and then will go up to full dose next Tuesday. We are hoping and praying that he will respond quickly as disease is progressing. It is nice to hear from you. We are Christians as well and our faith is seeing us through this difficult and emotional journey. I liked your comment that you are choosing to live in faith and not fear. In all honestly, there are days that the fear gets the best of me but you have to keep moving forward in hope and pray those bad days don’t come around very often. We have found a lot of good information on a forum called Inspire.com. They have a lung cancer section that has many patients and careginvers as well, that put out some very good information and encouragement. It is a good place to ask questions if you have any. My email is tjayp1984@msn.com if you would like to correspond further.

  6. Dear Team Emily and Miles, Just viewed the video and am impressed with your poise, and intelligent, heartfelt presentation. I love the updates on your improving health. Stay strong;) gh

  7. I watched Emily’s talk. She is such a wonderful speaker. Hope to see you when we come to LA in February. Ginny (Nathan’s mom)

  8. Continuing to think of you and pray for you both! You are amazing Emily, and I am grateful that you continue to represent the patients and fighters of cancer. As one member of your “army” I stand with you!

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