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LaurenH

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LaurenH last won the day on February 15 2019

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About LaurenH

  • Birthday 10/18/1985

Profile Information

  • City
    Bethesda
  • US State (if applicable)
    MARYLAND
  • Country
    USA
  • Status
    Not a patient
  • Interests
    Social Media, Running, Yoga, Reading, Traveling, Cooking

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  1. Thanks for all your work you put into Friday's Lunch and Learn in Philly; it was a good day with good speakers!

  2. This story is about my encounter with cancer, which happened in 2014. I had a near-death experience, and was rushed to Kaiser Zion medical facility in San Diego, CA. My doctor, Dr. Tomssi met me in the ICU and let me know that my body was struggling with issues regarding the bowel. I was excreting dark colors, almost purplish in color, which indicated blood. I had lost about four pints of blood and it would have led to death. I think God saved me from that near-death experience. In February of 2014, Dr. Tomssi found evidence of cancer from lab tests and let me know about the results. Of course, I was very upset, I believed that my future was near its end. I was in shock, and to add more to it, I was required to use colostomy bag, receive radiology for chemo. All in all it was a shocking experience, and I naturally rejected the idea, because it was so uncomfortable. Dr. Tomssi encouraged me to explore those options because it would save my life, and prevent the cancer from increasing its stages. Dr. Tomssi mentioned that he had found something on my right lung that could be unstable later, so I should consider preventive measures. Dr. Tomssi encouraged that I lead a stress-free life and explore healthy lifestyle to prevent the stages from increasing. I naturally agreed. I had gone into bouts of depression and Dr. Tomssi’s office had tried to reach out to me for appointments and follow ups, to which I neglected. At one point I gave in and went to see the doctor, Dr. Tomssi was very humble and gave me positive spirits where he encouraged me to get a check-up for any cancer indications. Two days later the office reached out to me via phone and told me that I had indications of cancer in the rectum. I decided to proceed with radiation, chemo, and mental health counseling. I had regularly attended chemo therapy and saw Dr. Zimmer for the process, but my wife was controlling, and did not agree to the entire process. She did not believe the therapy would help fight cancer, my wife had the family move to Virginia then in Wisconsin during the process, so I lacked stability and support from home. My mind and body was equally weak and it felt like I was always in a body of water, my memory was always lapsing. My memory went away as did my body, it seems to be about sixty percent loss. In February of 2019, I moved back to San Diego, and Dr. Zimmer was my doctor again, and we had a scan again. It turned out that my cancer had progressed to stage four and instead of one spot, I now had six spots. I was encouraged to sign up for the LifeLine Mentor program and I was assigned with Melissa Crouse who is very humble and encouraging to me. My family is all very worried about me and is grateful that I have this kind of support from different agencies. This is especially important seeing as I had lost my son not too long ago due to suicide as a result of PTSD from the armed forces. I value the support I get from LUNGevity.org, and that place is where I feel at home, and safe.
  3. Hi, Katum31, Welcome to LCSC. My name is Lauren and I'm the Digital Community Manager for LUNGevity Foundation. I'm glad to see that you've already connected with a few of our members. This community is a great place to find information and support. Please feel free to explore the message boards and blogs, ask questions, and join the ongoing conversations. In addition to these forums, LUNGevity also has a robust Lung Cancer 101 website, free patient educational materials, a Survivor and Caregiver Resource Center, peer-to-peer support programs, a toll-free Lung Cancer Helpline, survivorship conferences, and lunch and learn events. You can explore more here: https://lungevity.org/for-patients-caregivers Please let me know if you'd like any additional information about LUNGevity's Support & Survivorship Programs. We are here for you! With gratitude, Lauren -- Lauren Humphries Digital Community Manager LUNGevity Foundation
  4. Hi, Kleo! It's good to have you back! Thanks for the update and we're glad to hear that things are going well! Have a wonderful weekend, Lauren -- Digital Community Manager LUNGevity Foundation
  5. My story begins in May of 2013. I am a high school special education teacher and for weeks I had a nagging but dry cough, I wasn't worried about it at all as I was running 3 miles a day, just completed a 5k road race and was very rarely sick. I finally saw my primary care physician who put me on a Z-pack and I went back to my normal life. A few weeks later since the cough had not gone away, I went back to my doctor who gave me a prescription chest x-ray, which I immediately threw on the passenger side of my car and forgot about it. Fast forward 2 weeks later, on a whim I was passing by the x-ray facility and decided to run in and get and a chest x-ray. The next day my doctor called and said he saw something on my lungs that he didn't like and was pretty sure it was cancer. A few days later a bronchoscope was done, and as I was waking up from it I heard a doctor use the word malignant and I knew he was talking about me! Never have I been so scared, I actually made them show me the name of the person on the results, thinking this is a mistake. Non-smoker, 58 year old healthy individual, never gave a thought to lung cancer. It is now 2019 and I have seen targeted therapy, chemo therapy, have had 2 surgeries. I have been on immunotherapy for 2 1/2 years, which has kept me stable. I think maybe the key to success is exercising religiously and making the body stronger for each day that follows. With exercise comes a strong mental attitude… two winning combinations!
  6. LaurenH

    Jim Pitts

    In 2013 started with pneumonia but wasn't getting over it, Dr. wouldn't give up something just not right he kept saying. Sent me to a pulmonary specialist who found a spot on my right lung. Immediately set up oncologist, surgeon & hospital within 7 days I was laying in the recovery room with minus -one lung. Come through with flying colors, home within 3 days, thought to myself piece of cake! Yeah wrong answer, started chemo 3 weeks later and within 24 hrs I was back in hospital dehydrated & sicker than a dog! Not going to sugarcoat it the next 4 months was hell! After that I refused radiation, oncologist wasn't happy, I didn't care. As of October 20 it has been 5 years & I was stage III B so don't believe the statistics, just never give up! and fight!
  7. That’s great news about your results, Kleo! We’re sorry you had to go through such a traumatic experience though! Thank you for sharing your good news. We hope you have a very Happy New Year! With gratitude, Lauren — Digital Community Manager LUNGevity Foundation
  8. Hi, Helen, I'm glad that you've connected with some of our members. If you have questions or would like information about lung cancer treatment and managing emotional and financial challenges, the LUNGevity Lung Cancer Helpline is a fantastic resource. The Helpline offers toll-free, personalized support from oncology social workers. You can receive referrals to financial assistance resources for needs including pain medication, homecare, childcare, medical supplies, transportation for treatment, and copayment assistance. The number is 844-360-LUNG (5864), Monday through Thursday, 10:00 am to 6:00 pm, and Friday, 10:00 am to 5:00 pm Eastern time. I'm also happy to provide you with information about LUNGevity's other patient education and support programs. We are here for you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
  9. Thanks for the update, Kleo! In this case, it sounds like no news is good news! I hope you get some relief from the muscle spasms soon though. Robert, we're thinking of you this week and hoping you can report good scans! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
  10. Facing a lung cancer diagnosis changes a person’s perspective about what matters in life and what doesn’t. Being diagnosed with cancer makes you put absolutely everything else to the side, or totally out of mind. You have the chance to let back in only the things that really matter back into your conscious mind. If you can do that, and spend more time focusing on things that really matter in the present moment, you will have completely changed and improved your mind and your life. I still get caught up in feeling anxious or scared about what might happen in the future and the negative impact it could have on my family, especially my wife and daughters. What’s helped me has been to realize that they are thoughts – they don’t have a physical presence anywhere and if you observe them but don’t chase after them, they go away. If I could give advice to someone newly diagnosed, I’d probably want to say a few things. 1. Slow down. Information is going to be coming at you really fast and it can be overwhelming, especially with the internet making everything move at hyper speed. Take your time to digest what’s out there in terms of treatment options, support systems, heavy medical information, etc. 2. Get yourself into a respected cancer center as soon as possible. Find an oncologist that you trust and have a good relationship with, and then TRUST that doctor. 3. Take everything, except what your oncologist tells you to your face, with a grain of salt. There is a ton of real, semi-bogus and totally bogus information out there about magical cures and treatments. Ask your doctor about all of them but, in the end, do what he or she advises. 4. Take a step back, look at the road ahead as objectively as you can and try to be practical. It is the “C” word but, after all, it’s an illness not a curse or a death sentence. Come up with a treatment plan together with your doctor, follow that plan and do what you need to do in order to stay healthy 5. Don’t give cancer more power than it already has by thinking you can’t face it and just giving up. You can face it. Maybe not today, or all the time, but eventually and most of the time you can. Lung cancer is just the same as any other kind of cancer. It will take the people you love just as heartlessly as any other form of the disease. It’s really good at taking people away; men and women, smokers and non-smokers, old and young, any race and origin. In fact, it’s better at that than most other cancers. We could all get cancer, and none of us would deserve it. We should fight it with research funding, trials, promoting new and existing treatments, by helping people pay for treatment, and everything else at our disposal. Not giving lung cancer the fight it deserves leaves us all that much more powerless to stop it from taking away someone we love.
  11. I learned about my lung cancer in a roundabout way in the summer of 2017. I started having headaches and experiencing vertigo. I also noticed some slurred speech and trouble with fine motor skills like writing. I went to a series of doctors to try to determine the cause, including my PCP, an ophthalmologist, a massage therapist, and an ENT. Eventually, a neurologist ordered an MRI. I went in for the MRI and afterward the radiologist wanted to see me to “look at something.” From then on, it was like a cascade, with lots of people coming in and out of the room conducting various procedures and making calls to my wife. I ended up getting the news from the attending ER physician and several interns or residents. They still had to do a biopsy to be sure, but based on the MRI and chest CT scans, they were pretty sure it was lung cancer. I don’t remember being floored by the news and I didn’t collapse or anything. Maybe I was numb to it but in the moment, it seemed obvious like, “Of course that’s what it is!” I actually felt bad for the residents and interns who had to tell me. It was like they were training on how to tell someone they have cancer. My wife, Judy, and my sister-in-law, Mary, who is an RN, arrived and I was grateful to have them there for support. Two days later, I underwent surgery to remove the largest brain tumor. They did a biopsy using that tissue, which confirmed my diagnosis: stage IV adenocarcinoma. Judy and Mary made appointments for me with a thoracic oncologist and a neurological oncologist at Memorial Sloan-Kettering. Initially, the plan was for me to start chemotherapy and radiation. My oncologist also ordered the MSK-IMPACT genetic test panel to identify any treatable mutations. The day before I was to start chemotherapy, my thoracic oncologist called to tell me that the test came back EGFR positive and I didn’t need to go through with chemo. She told me that I was a candidate to take Osimertinib, a targeted therapy drug. I still had to do five rounds of radio-surgery as well, but the treatment options changed completely. There was no question about whether I was going to take that or not. One of the biggest challenges was recovering from surgery and getting back to work. That wasn’t easy, but the support from my family, friends, and employer has been tremendous. I have the good fortune to work for a company that puts people first, and they have been very accommodating. From the beginning, my large family started coming to visit and help with things like cleaning our house and delivering meals. I’ve been a pretty avid runner for several years. Before I was diagnosed, I ran 8 ultra-marathons, 7 full marathons, 10 half marathons, and a bunch of shorter races. Getting back into running regularly took a back seat to recovering from my surgery and the initial rounds of radiation. I was able to start running pretty regularly about 2 months after diagnosis. So far this year, I’ve run some 5Ks and trail races, three half marathons, one full marathon, and one 50K ultramarathon. The marathon, especially, was a big milestone for me. I ran the New Jersey Marathon, which I had finished three times before cancer. Being able to run it again after my diagnosis was a really uplifting and fulfilling experience for me. I’ve been fundraising for Fred’s Team, the running charity for Memorial Sloan-Kettering Cancer Center. Since my diagnosis, I’ve done a lot of research and made a lot of connections online, both of which have helped me understand and deal with cancer better. LUNGevity’s Facebook groups have opened up a large network of people who are more than happy to provide support and information, answer questions, and share their experiences. I think in the past, and to some extent still today, most people only considered a ”survivor” to be someone who had been diagnosed with cancer, underwent treatment, and was in remission or totally cancer-free. That definition leaves a lot of people out, myself included, who are on long-term treatment. To me, a “survivor” is anyone who has been diagnosed with cancer and is still alive. Some of us may never be totally cured but we could survive for a long time thanks to new treatments liked targeted therapies. Hopefully, we’ll survive cancer long enough to live a full life and eventually die of something else, like a skydiving accident at the age of 97!
  12. LaurenH

    Don Fredal

    I was diagnosed with Stage IV lung cancer in September 2014. Like many people, my diagnosis came as a huge surprise to me and my family. A friend told us about the Breathe Deep Kansas City Walk that was happening in our area. We called our team The Village People because we like to say, “It takes a village” to fight this thing. The Breathe Deep walks provide an opportunity to raise awareness and money in your own community. It’s very powerful. I attended my first National HOPE Summit in Washington, D.C. in 2015. Lung cancer is so isolating and overwhelming. Then you get there and meet other survivors and caregivers and experts. I feel like I always leave HOPE Summit with 150 new friends and then I don’t feel so lonely when I get home. The next year my wife and I attended the 2016 Hope Summit together, she finally understood how these friends I had been talking about for the last year could be so intertwined with my health and healing. We made even more friends and keep in touch all year long through social media and other events around the country. Once you get to HOPE Summit, it’s so empowering that you want to get involved. I found out about the LifeLine Support Partner program at HOPE Summit. LifeLine is nice because you can work remotely and there’s an opportunity to give back. My mentor, Matt Ellefson, is one of those people who LF relies on to have multiple mentees and he was very inspirational for me because of our similarities and what we’ve been through. It was a very good fit. LUNGevity tries to match people based on age, gender, diagnosis and geographic location. It’s always felt very comfortable. I’ve had mentees assigned to me and we usually have a really good talk and maybe hear from them once or twice and that’s all they need at that time. We talk on an as needed basis. Hopefully, I’m encouraging people depending on where they are. A lot of the time, the person is newly diagnosed and it’s very fresh with them. As a mentor, you have to put yourself back in that frame of mind. It’s important to remember that you’re not there to fix their situation. You’re there to listen to what they need and let the conversation evolve. The most rewarding thing about being a volunteer is being able to help someone else by sharing my experiences and the ups and downs that I’ve had. If I give any advice it’s always to find a specialist who is an expert when it comes to your diagnosis type or mutation. It’s so important to be very confident in your medical team. Don’t be afraid to get a second opinion. If your doctor isn’t jiving with you, keep looking. It just feels good to help somebody through this because as we all say, it’s really hard for other people who haven’t gone through it to understand. When I was diagnosed, I was given 9-18 months. I’m coming up on 3 years and 11 months and my wife and I are going out to Los Angeles next month for the Stand Up for Cancer telecast on my 4th Cancerversary. I hope that my efforts as a LifeLine volunteer will inspire the people I mentor to do the same for others. I’m a big believer in paying it forward. It’s a big world and there are a lot of people affected by this disease.
  13. Hi, Susan, You are not alone! I am glad to see that you've already connected with several moderators and members on this site. This is a great place to find support, information, and hope! Please continue to post updates and ask questions. I am happy to provide you with information about LUNGevity's support and education resources. If you have nutrition specific questions, I'd recommend reaching out to the experts at Savor Health, who have partnered with LUNGevity on our Experts Nutrition blog. Here is the link to submit a question: https://lungevity.org/savor-health-nutrition-blog-questions With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
  14. “I’m sorry, sweetheart these are tumors in your lungs and a form of lung cancer”. These were the words spoken to a vibrant, healthy 36-year-old female on October 19, 2017, by the thoracic surgeon. I knew that things were probably not good when he came in and asked if I was alone. Unfortunately, I was alone. Looking back, that day seems like a blur. I remember the ladies at the checkout desk asking how I was doing as they ask so many patients all day long. It’s mere customer service, right? I never made eye contact and mustered enough energy to say the word “fine”. I was far from fine, but I just wanted to get out of there. I never cried in the doctor’s office that day, but walking down that winding hallway and through the parking lot felt like I was carrying cinder blocks for shoes around my feet. The minute I got in my car and closed the door was the moment that I completely lost myself. I have cancer. I am going to die. My parents are going to have to bury their only child. My world felt like it had crashed. The days and weeks ahead were just amazing considering my new circumstances. People loved on me like I had never been loved on before. I received cards and texts and all sorts of support, but a part of me wanted to tell them that I was still the same person and I appreciated the cards of support, but that I wasn’t dead yet. Please hold the flowers too. My lung cancer diagnosis was a complete shock as it is to so many. However, I was asymptomatic and cancer was the last thing on my brain. I was hospitalized for a Bartholin Cyst. I had my yearly exam already scheduled with my OB/GYN and this exam was far from routine. I explained to the nurse that I was in pain and was running temperatures between 101-103⁰. I visited the local emergency room twice to attempt to acquire some relief and was incorrectly diagnosed. My OB/GYN admitted me to get antibiotics started quickly and mentioned a minor surgery, but before I went to the hospital, he wanted me to have a CT of my abdomen to identify the cyst prior to any procedure. Thankfully, the tech caught just the lower portion of my lungs on that scan and the radiologist noted lung nodules. When I went back to my OB/GYN for my check up, he mentioned the lung nodules and ordered a full chest scan. He informed me that people had benign nodules and they could be there from my severe infection, but that he wanted to just make sure that it wasn’t anything. The next day he called me to inform that the nodules were still there and he would like for me to see a Pulmonary Specialist. I agreed and the Pulmonary Specialist was very concerned about the number of nodules in my lungs which were over 100 scattered across both lungs. He conducted a bronchoscope and a needle biopsy for which both were non-diagnostic and I was then punted to the Thoracic Surgeon. The Thoracic Surgeon removed three wedge sections and sent the pathology off to Mayo Clinic in Arizona. After further molecular testing, my oncologist educated me on the different mutations and the path of treatment that would be taken for each of them. It was determined that I was Stage IV due to both lungs being involved and was positive for T790M. I began Tagrisso as a first line on November 11, 2017. After 6 months on this drug, my last scans read “barely perceptible”. I will keep taking Tagrisso until resistance occurs and hopefully there will be another inhibitor to take its place. When I was first diagnosed, I would literally wake up in the night in a panic. I couldn’t sleep, eat or function normally. I started browsing the internet for support groups and pages as well as social media. I found the LUNGevity private patient groups on Facebook and asked to be added to every single one of them. I began telling my story and people started responding to me and sharing their stories. Strangers were sending me encouraging private messages. I saw people living and thriving with an incurable, life-shortening disease. I found hope. I started sleeping and not crying so much. Finding those support groups really made the initial journey a bit easier. Although we were strangers, we were brought together by a common bond. I’ve since been able to meet some of those people in person through the HOPE Summit and my “family” has grown by leaps and bounds. I would have never met these incredible people without lung cancer. Receiving a lung cancer diagnosis is not something any of us would have willingly signed up for, but I am thankful that I was able to find out before it spread all over my body and treatment options were expunged. I am also thankful for the perspective shift. I now know what it means to live each day with intent. The days of merely existing are over. It’s time to live and love life to the fullest because I now understand the value of each day that I am given.
  15. For the past 11 years, I’ve helped treat lung cancer patients as an RN in a cardiothoracic practice. Then last October, I developed a bad cough that lasted over a month. It was cold season, and my co-workers and I thought it might be pneumonia or even bronchitis. No one suspected it could be lung cancer, since I’m a nonsmoker and haven’t been exposed to common risk factors like asbestos, radon, or pollution. I had a chest ray taken, which showed fluid around my right lung. The tests of the fluid didn’t uncover anything extraordinary. I didn’t look sick, but I felt fatigued and at times, I had difficulty breathing. A few days later, I had a CT scan, which supported the pneumonia diagnosis, but it also showed a thickening on my chest wall. The doctors drained the fluid and tested it twice. Both times, the results came back negative for cancer cells. This didn’t completely rule out the possibility, but it gave us reasons to be hopeful. I started taking antibiotics and steroids, which were prescribed by a pulmonologist. But the second CT scan did not show any improvement. My first surgery was scheduled for late January. The doctors thought I had an infection and that they’d be able to clean it out. But during surgery, they discovered growths in my lung that had expanded into my chest wall. The hospital lab confirmed that it was lung cancer. My boss, cardiothoracic surgeon Carmine Frumiento, and my colleague, Danielle George, a longtime friend and physician assistant who I work with every day, had to give me, my husband, and my family the heartbreaking news that I have advanced lung cancer. It sounded so surreal that at first, I thought I was dreaming. I have a 6-year old daughter and a 2-year old son. All of the sudden, I went from being a care provider to being a patient. I had the surgery, and then later that week, I traveled to Massachusetts General Hospital to meet with some of the best specialists in the country. Danielle traveled to Boston with me and my husband, Chris. Before we left, Danielle and Dr. Frumiento helped us prepare a list of questions to ask the doctors at Mass. General. The doctors at MGH recommended starting a new targeted therapy without chemo or radiation. The results have been very promising on patients with my genetic mutation. But since the medication is so new, my insurance would not pay for it unless I tried an older treatment first. In order for her insurance to approve the new treatment, I would have to progress on the old treatment, or suffer from intolerable side effects. It felt like I was on an emotional roller-coaster. Fortunately, my colleagues helped me appeal the insurance company’s decision, and we won. I still work as a nurse, but I’ve cut down to just mornings, since I get very tired by the afternoon. I’m very grateful for the support of my work friends, who have become like extended family. They’ve helped to make sure I’m getting the best care. I realize that not all patients have those strong connections, and how important it is to advocate for yourself. I’ve been fortunate to have incredible support from my family, friends, and community. They’ve helped with everything from meals to child care to raising funds to help pay for my medical expenses. And my family was selected as the beneficiary of the Celebration of Courage Co-ed Hockey Tournament earlier this month. My husband has played in the tournament for many years to help support and raise funds for families affected by cancer. Now, our family is affected by cancer. It is likely that my cancer will never go away, but I have been told that the genetic mutation cannot be passed down to my children. The goal is to turn my cancer into a manageable chronic disease that I can live with until better treatments are available. I hope my story will raise awareness that lung cancer can happen to anyone, even young nonsmokers. It’s a fact I never fully realized myself, until I was diagnosed. There is so much blame and stigma surrounding lung cancer. I want to help raise awareness about the resources that are available for anyone who is diagnosed.
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