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!
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!
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.
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!
“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.
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.
My lung cancer diagnosis came as quite a shock to my family, my doctors, and me as I’ve always maintained a healthy lifestyle. I exercised regularly, ate healthily, never smoked, and enjoyed a variety of outdoor sports and other activities with my husband and our three children. I worked as a learning specialist for children ages K-8 and loved my job. Everyone I was close to commented that I was “the healthiest person they know.”
But in March 2011, after worsening back pain, I visited my physiatrist who ordered an MRI. I figured I had a disc issue with my back or created an injury from too much sitting during work. When I saw my doctor for the results, she was speechless; she told me my upper body was "riddled with lesions." I said there must be some mistake, that the scan was someone else’s. As the doctor insisted there was no mix-up and this was truly me, I felt as if the floor had given way under me, a feeling that never seemed to fade from my day-to-day experience.
I was 54 years old. A few days later, I was diagnosed with Stage 4 non-small cell lung cancer. Since I was an otherwise healthy, active, never-smoker, the doctors at Memorial Sloan Kettering Cancer Center predicted I would have the EGFR mutation, and the biopsy results proved they were right. The targeted therapy, Tarceva, shrunk my tumors, and with tolerable side effects, allowed me to continue leading a relatively normal life. I even took up sculling, a sport that I had always aspired to learn.
However, I was disappointed when only after 9 months my cancer figured out a “way around” the Tarceva, which is expected for targeted therapies (referred to as acquired resistance). Thus, began my participation in a series of clinical trials and chemotherapy, all with mixed results and, at times, difficult side effects, which forced me to retire from my work which I truly loved and still miss a lot.
One bright period during these trials was a 14-month durable response from a trial combining Tarceva and the immunotherapy drug called Nivolumab, also known as Opdivo. Unfortunately, after 14 months I had to be quickly removed from this trial due to adrenal failure and colitis. In addition, I have been taking blood thinners since the diagnosis because of a DVT that was found at that time, and a couple of years ago I had a brain tumor surgically removed. My latest battle is with Leptomeningeal Disease, against which I hope to beat the odds once again.
Throughout my treatment, I’ve taken advantage of different integrative health services to help manage symptoms and side effects, such as acupuncture, counseling, support groups, and meditation. I can’t say these endeavors were always helpful, but it was important for me to try to find alternate ways to manage symptoms, both physical and emotional. However, over time my stamina began to wane, and my sense of self efficacy began to diminish. It became increasingly frustrating not to be able to do the things I always enjoyed. The treatments and their side effects can wear you down.
Initially, I struggled to find camaraderie with other survivors who have the same mutation as mine. Social media has been particularly helpful, especially in the beginning when I was trying to learn about different treatments and find a community. LUNGevity, Cancer Grace, and Inspire, and Lung Care Alliance were all useful sources of information and support.
My husband has been a great support and care giver. Initially, he dug into the research to learn what treatments were in development, so we knew what was in the pipeline. Moreover, my children have also been there for me. Even though they’ve grown up and don’t live at home anymore, they still come to visit me as often as they can. It has been difficult for me to accept not being able to participate in their activities and lives the way I was able to when I was healthy. It has been a continuing effort for me to feel “a part of the game.”
If I could share my experience with someone newly diagnosed, I would recommend getting as much information as you can from credible sources and not being afraid to get second opinions. It’s best to be treated at a major cancer center even if it means traveling because the research experience, depth of knowledge, and specialists they provide are cutting-edge. I would also recommend participating in clinical trials if they’re an option, as well as trying to find people to connect with who are going through similar situations.
Since my diagnosis, life has been a roller-coaster ride of living with uncertainty and trying to function amidst toxic side effects. I try to appreciate the good days and keep active. This spring will be my seventh-year anniversary living with Stage IV lung cancer. I am grateful for those who are raising awareness of lung cancer as a growing epidemic in non-smoking women and am excited to share my story to help other patients. I am especially interested in helping to erase the stigma that lung cancer is only a smoker’s disease, and hopefully increase research funding to the level it should be.
October 30, 2015 will forever be the day my world changed. That day I heard those words that no person wants to hear: “You have cancer.”
I kept questioning how this could happen to me. I was a healthy, 35 year old nonsmoker, and a mom of two great children. I came to learn that you don’t have to be a smoker to get lung cancer. Honestly even if one was a smoker, would it matter? No one should have to go through this terrible journey.
Soon after my diagnosis I saw a surgeon and was told that I was not a candidate for surgery, as my cancer had metastasized to the surrounding lymph nodes. Instead of surgery, I was scheduled for 35 sessions of radiation and two rounds of chemo infusion, believing that if the treatment was effective that surgery could be an option to remove the remaining cancer. After my initial chemo and radiation was complete the tumor in my lung had shrunk considerably and lymph nodes appeared to be clear of cancer. Good news, right? Unfortunately, new scans showed that what had been an inconclusive spot on my liver had now grown into a tumor, and my official diagnosis was changed from stage 3b to stage 4. The new tumor meant surgical treatment was no longer an option, and that medicine is my only hope.
At that time my husband and I realized it was time to get a second opinion, which turned out to be one of the best decisions of my life. My new oncologist tested my cancer for genetic mutations. At the time, I had no idea what he was even talking about. Then I received a call from him on a Friday afternoon stating I have the EGFR mutation. I could hear the joy in his voice. After doing some research I came to understand that this was a very good thing, and within a few days I started to take a targeted therapy called Tarceva. My quality of life is way better than I would have ever thought possible. I’m now 37 and living with stage IV lung cancer, hoping that medicine advances faster than my tumors.
During my initial treatment I was bitter. I did not want to hear “you can beat this” or “you are the strongest woman I know” or “you are a fighter.” I just wanted to get through my treatment and move on with my life.
As much as I hate my cancer, it has taught me some valuable lessons. First, it taught me to slow down. I didn’t realize how much I was just trying to get through life, instead of actually living it. Ironically, I enjoy life more now than ever. Second, don’t sweat the small things. Living with a terminal illness helps one understand what‘s really important in life.
Kateri and her family
In December 2016, I started experiencing a lot of shoulder pain and then back pain leading to shortness of breath. I went in for an X-ray and MRI, and was told I had pneumonia. I knew that wasn’t correct because I hadn’t been sick enough to get pneumonia. I spoke to my doctor and insisted on being seen again right away. I was sent to the hospital to have a CT scan, which showed fluid in the lining of my lungs. I had the fluid tapped for testing and it was bloody. I was referred to a thoracic surgeon and underwent surgery to have the fluid drained in March of 2017. During surgery they did a scope to look around and found and removed a cancerous mass. I was diagnosed with Stage IV adenocarcinoma lung cancer.
I was in the hospital for five days. When I got out on a Friday, I met with my oncologist. They decided to test the mass for genetic mutations. My oncologist called me at home to share the results. I was expecting bad news, but she said she had good news. Genetic testing showed that my cancer was caused by the ALK gene mutation. She told me that having a genetic mutation was like winning the lung cancer lottery because there were very effective treatment options.
At the time, Alcensa was still a second-line treatment, but my oncologist and I pushed for me to be able to start taking the drug. It was so new that I was one of the first patients at my hospital to start taking it. Just a few weeks after I started taking Alcensa, it was approved as a first-line treatment.
I have some physical challenges that impact me. Some of them are shortness of breath, muscle pain and fatigue. I have nerve pain from my thoracic surgery as well. I am also dealing with mental challenges. I am working fulltime however, I struggle with memory loss, focus and vision issues, all of which are side effects of my treatment. I also deal with some depression. I explain it to family members as mental torture. You try to enjoy living but, you are always aware that your life can be cut short at anytime. The cancer consumes your thoughts 24/7. That is really hard.
I recently became a member of the ALK Positive Facebook group, which led me to LUNGevity Foundation. ALK Positive has partnered with LUNGevity for a research grant for our cause. It’s a great partnership. I wish I would have known about LUNGevity and the ALK Positive online support group right away. LUNGevity really advocates for patients. They are such a great source for support and information. I noted that they share survivor stories and I immediately decided that I wanted to share my story with others. The more we talk about lung cancer, the more others learn and we can get rid of the stigma. Putting faces to this disease makes a real impact.
I would tell a newly diagnosed patient to reach out to support organizations like LUNGevity. Knowledge is power and there is hope. The more you know about this disease and advocate for yourself the better off you will be. It’s a scary road but a little easier when you find good support sources.
Survivorship means I am living with this disease. I hope to keep living with this disease for many years and provide support and advocate for others. I do not want to sit and wait, I want to take action to help myself and others as much as possible. We need to fight for more research funding and to make others aware of this disease.
I hope to touch others with lung cancer and inspire them to share their story and find their voice to advocate. I want to get the word out about ALK lung cancer and remove that stigma that it’s a smokers’ disease. Whether you smoked or not doesn’t matter. If you have lungs, you can get lung cancer. I hope that as others find their voices too, we can get the word out about how we lack sufficient funding for research. That is really important to me. 433 people die each day of lung cancer – we have to change this!
I found out that I had lung cancer back in August of 1999. I had 3 bouts of pneumonia in the first 6 months of that year. The last chest X-ray showed an area of concern. The next step was to have a CT scan of the area. I had the CT and they saw a blockage in my right lung between the lower and middle lobes. I was sent to see a pulmonologist and he scheduled a biopsy. He preformed the biopsy and they found a tumor that was blocking the area of my main bronchi between those two lower lobes. They tested the sample from the biopsy and it showed Non Small Cell lung cancer. I was staged at 2B.
At that time they asked if I’d be willing to try a new approach in treatment. I said yes. The new procedure was to give me 6 rounds of chemo then 39 radiation treatments and the surgery to remove my two lower lobes in my right lung. The “old” way was to reverse those steps. Since then they have found no change in survival rates doing it one way or the other. My comment is 18 years and I’m still here. I think it worked great!
Of course all these years later things have changed but not until recently. When I was diagnosed the Internet was in its infancy. There were no lung cancer support groups on line or in hospitals. We didn’t live long enough as a group to have a call for them. There were cancer in general groups but I was on the young side of the equation which put me in a smaller population. I wish there had been more groups or on line groups.
I had a young family, I owned a small landscaping business and I paid my own health insurance. My wife was a stay at home mom who worked part time. We had decided it was more important to us to have the children have a parent available and I would just work longer. At that time my heath insurance was an HMO and was the cheapest I could find. But this is when the health insurance crisis started. My premium went from under $400.00 a month to over $1800.00 a month in a year’s time. I somehow managed to stay working through treatment and the surgery. Thank you my friends, relatives, and employees who carried a lot of the load. After surgery my wife had to go to work full time to get us health insurance. For a few months we somehow made it without insurance.
I started the survivorship journey dealing with multiple doctors’ appointments, testing appointments and running a business. It was not easy but as with anything you make adjustments to fit it in. You have to. The first five years of this survivorship was learning how to negotiate my way. I’m in a physical business. I can’t do what I used to. I had had a bad back for years since the cancer, my back has been great! I can’t swing a sledgehammer or chase a lawn mower or anything rough that I used to do. Instead I worked my way around it. I bought a riding mower, can’t do all the lawns I used to but I can mow larger lawns easier. I can’t move wheelbarrows full of soil, rocks or even plants but I can run a tractor and do it that way. I can’t run anywhere but I walk and I get there slower but not that much slower. You will find new ways to do things and or you don’t do something’s.
I remember my wife asking the surgeon what will my husband be able to do after the surgery. He said well if he said he played tennis, I’d say he couldn’t play that anymore. I guess the look on her face made him ask why do you ask. He owns his own landscaping business. Oh, hmmmm, I have never told a patient that they couldn’t do something but you’ll know what you can or can’t do. So that’s how I took how I’d live my life. I’ll try to do everything and see if I can. If I have to perform this or that I will find away.
Over time I have realized how lucky I’ve been to survive this long. After a few years I went searching the Internet for someway for me to give back. I found the Lung Cancer Alliance through their website and online support group. That is when I started to talk to anyone who was newly diagnosed with lung cancer. I vowed I would try to make sure that no one would start this journey without someone to say I know how you feel and it’s ok to be scared, alone, and despondent. No one knows what it is like to have someone tell you, you have lung cancer, any questions? As they did to me the very first time anyone even mentioned to me that I had cancer. Scared is not even close to how I felt.
I found out about LUNGevity from a couple of survivors who were on another site. I also found that I noticed more advocacy from LUNGevity in respect to serving the lung cancer community, informational posts that I found very interesting and the very active organization that seemed to be everywhere reaching out to those in need. It certainly fit with my own advocacy thoughts about trying to reach out to the newly diagnosed.
As a closing thought, try to always keep in your mind, there is always hope, hope not only for today but for tomorrow and the next day and the day after that!
I was 52, a wife, mom and teacher when diagnosed with stage 3a NSC Adenocarcinoma lung cancer in September 2012. I had no symptoms and did not fit the criteria of a lung cancer candidate.
An observant radiologist had noticed a small shadow in my lower right lobe when viewing an unrelated abdominal scan in 2010. Because I didn’t fit any of the LC criteria, no specialist or surgeon thought that it would be lung cancer. They adopted a “wait and see” plan using two six-month scans and then moved to a one-year scan at which that point indicated that my “nothing” spot had in fact grown and was probably lung cancer.
My world had been turned upside down. I quickly had surgery to remove my bottom right lobe and several lymph nodes. Unfortunately, cancer was found in the lymph nodes and the tumor. This led to four rounds of chemotherapy (Cisplatin and Navelbine) and 25 treatments of radiation along with all the mental and physical issues that many people can only imagine.
Cancer can be a very lonely disease even when you have a ton of support. I couldn’t find survivors in my area so I began searching out on-line groups that I could communicate with about my disease. This is where I discovered LUNGevity! The members of this group and all those associated with the organization wrapped their cyber arms around me and welcomed me into their world. This was literally a life-saving experience for me and continues to be part of my daily communication.
Two years ago, people in the group began speaking about the National HOPE Summit in Washington, D.C. and how beneficial it was for both patients and caregivers. Because I am Canadian, I inquired as to whether my husband and I could attend. I was told of course we could!
My husband and I attended HOPE Summit and that experience has changed my life. Meeting other survivors and hearing from physicians and researchers empowered me to return to my own country and begin asking questions about lung cancer research and most importantly, begin my work as a lung cancer advocate.
The Summit allowed me to meet so many people who are advocates not only for their own health but also for lung cancer research and advocacy work. These people meet with politicians, organize, and participate in lung cancer fundraisers and teach so many of us about treatment options.
Although Canada does not have as large a network, there is a small group of us who have been empowered to meet with politicians, educate and support others with the disease and spread the word about early lung cancer diagnosis, all because of our experience at a LUNGevity HOPE Summit.
Education is power but knowing you are part of a strong, supportive, and knowledgeable group of individuals is invaluable. Thank you LUNGevity!
Allison Doan has been on a long journey of self discovery, from a life of elite privilege to a brief time in federal prison, and then a battle with stage IV lung cancer. Through years of ups and downs, and finding forgiveness and strength she didn’t even realize that she possessed, Allison has remained determined to share a message of hope.
Allison’s broken road has led her to a place of peace. She’s written an inspiring memoir, Bruised and Beautiful, which will be published later this month. By sharing her story, Allison hopes to inspire people that it’s possible to get through life’s hardships with love, faith, and trust.
“I wanted to write the book when I was facing prison because I knew that I was going to take something horrible and scary and turn it into something good. I wanted to convey a message of hope that you can face anything with God on your side. When I started writing, I thought I’m going to end it here, and then the cancer struck,” says Allison.
She describes her cancer diagnosis on her Caring Bridge site:
“In early November 2014, I noticed a large lymph node on the right side of my neck. I was also having some pain with breathing and a dry cough. After some time had passed and no progress from antibiotics, my primary doctor ordered an ultrasound and several CT's which would reveal some concerns.
The CT had shown 3 large lymph nodes in my chest (mediastinum area), 3 nodules in my lungs and 2 nodules in my thyroid gland. I was referred to an oncologist who ordered a biopsy on December 29. I was preparing myself for the news of possible lymphoma or squamous cell carcinoma according to what the doctor said. My doctor informed me that I have what looked to be medullary thyroid cancer a very rare form of thyroid cancer. A blood test was ordered to confirm this and a PET scan to see where the cancer might have spread.
I began the arduous task of research to find those doctors that might have a specialty in this area. We decided to head to MD Anderson in Houston for a second opinion. After more testing and another biopsy it was confirmed that the cancer was actually coming from the lung. They diagnosed me with Stage IV neuroendocrine lung cancer which is incurable.
After the shock and fear subsided I began to cling to my strong faith in our loving heavenly Father who holds me and this situation in His loving hands. Jeremiah 29:11 'For I know the plans I have for you sayeth the Lord, plans to prosper you and not to harm you, to give you a hope and a future.'”
Realizing that her story wasn’t complete, Allison continued to write while undergoing treatment, hitting some roadblocks along the way. Allison says she “learned to navigate through the world of a cancer patient: days of normal, days of doctor visits, days of feeling great, and days of feeling crummy. Lung cancer is an up and down journey of new treatments. Then they stop working and you try something else.”
Allison’s husband and care partner, Keith, has been by her side since the moment of her diagnosis. The two were married while she was undergoing treatment and planned their honeymoon in St. John in between clinical trials.
Allison shared her story with country music artists Dave Fenley and Ray Johnston, who penned a song in her honor. The song, called Bruised and Beautiful (Alli’s Song), is full of grace and gratitude. It carries Allison’s powerful message of living each day to the fullest and trusting God.
Part of proceeds from book and song will go to LUNGevity Foundation. LUNGevity was the first organization that Allison found when she started looking for online support after her diagnosis. The song Bruised and Beautiful is available for download on iTunes. Allison’s memoir of the same title, will be published in June 2017.
In May, Allison entered hospice care to help with symptom relief and quality of life. She tells her family and friends that she’s staying “Allistrong” and that she’s humbled by the love, support, and encouragement she’s received. “Above all,” Allison says, “life is worth living.”
Allison and her husband Keith, with their children Daniel, Peter, Megan, and Grant.
I was diagnosed in April 2017 with lung cancer (stage 4 adenocarcinoma with malignant pleural effusion). I celebrated my 47th birthday in May. My husband and I will celebrate our 22nd wedding anniversary in July. We have a 12 year old daughter. This is my second stage 4 cancer diagnosis.
The first was shortly after my husband asked me to marry him. I was 23 years old and had stage 4 Hodgkins. I was treated with a combination MOPP ABVD regimen. My life was placed on pause while I took 24 treatments and tried to make a new normal. After 15 months of chemotherapy, I was given a clean bill of health. The original plan included pinpoint radiation but after consulting the tumor board, my oncologist told me the group decision was to stop with chemo. Now I could plan my wedding and get on with my life. My oncologist and nurse even attended my wedding.
Years later at a follow up, my oncologist told me that we dodged a bullet by not doing the radiation as many patients were now being diagnosed with leukemia or breast cancer. I remember feeling a cold shiver at the thought that I could have been in that position. We were blessed with a daughter even though I had been told I most likely would be sterile.
Fast forward to 2017, I had a cold early in the year but could not shake the cough. I was given a couple of rounds of antibiotics, then was referred to the pulmonologist. I had a thoracentisis. The pulmonologist told me not to Google, but I did, not about pleural effusions but about long term effects of MOPP ABVD. The following week, he gave me the diagnosis and I admitted my transgression. Maybe the lung cancer is just the hand that I was dealt, but I can't help but tie it back to the treatment for Hodgkins.
I have been very fortunate to have wonderful support from my family, friends, and co-workers. I have also had incredible medical care from physicians, nurses, and support staff.
If any Hodgkins survivors who only had chemo and have also been diagnosed with lung cancer reach out to me, I would love to correspond and discuss histories. Thanks for reading my story.
In 1998, Ruthe Cain was living life in California and enjoying being close to the fresh air and the great outdoors. She was in her late fifties and loved living an active lifestyle, but that year she would face a diagnosis that would change her life: she learned that she had lung cancer. More than 15 years and three surgeries later, Ruthe is still a survivor, and she’s still enjoying life in every way she can.
Ruthe first suspected something might be wrong with her health when she had trouble with her vision. “All of the sudden, it looked like a black veil over my eyes,” she says. She went in to see her doctor, and after a series of tests, she was surprised to hear that the problem might be not with her eyes, but her respiratory system. “I didn’t think a thing about my lungs. So they sent me in for a chest x-ray, and that was the beginning of it.” Ruthe was diagnosed with non-small cell lung cancer, and soon after, she underwent an operation to remove one of the three lobes in her right lung.
“After that first lobe was removed, I had no side effects at all. I was totally fine,” she says, and she continued to live an active life, snow skiing, and water skiing and getting outside throughout the year. She also kept up with regular lung exams in order to check for a possible recurrence. It wasn’t until a decade later, in 2008, that a new problem was discovered.
On a trip from Maine to Pennsylvania to visit her son and daughter-in-law, Ruthe felt a pain in her chest. “We went to the hospital, and they did a chest x-ray, and sure enough they found another node,” she says. With this second diagnosis of lung cancer, surgeons removed another lobe of her lung, and they also noticed some suspicious findings that indicated changes might be happening in the remaining third lobe. A year later, when a growth was detected, they removed the last part of her right lung, leaving only her left lung intact.
“I was really lucky,” says Ruthe. “I have never had [to use] oxygen, I’ve never had any radiation or chemo. But this last surgery, it was definitely a life changer.” With her whole right lung now gone, Ruthe had to cope with more serious side effects, such as an increased danger from chest infections and a noticeable amount of fatigue. It also meant some of the outdoor activities she had always enjoyed were simply no longer possible. However, she has found lots of ways to stay positive – and stay moving. “We got a dog a few years ago, so I am able to take her on the trail at the dog park,” says Ruthe. She also loves spending time in the pool with her two grandsons and recently enrolled in a water aerobics class that she attends with her husband.
Time is supposed to heal our wounds, that’s what people say; but when you lose your best friend you realize that no amount of time will heal that void that is left.
My mother was diagnosed with non small cell lung carcinoma three months after I turned eighteen, only weeks after what would turn out to be our last family portrait. The day the test results came back the only words I heard during the meeting were “cancer” which meant someday I’d be burying her. I don’t recall anything else; but she heard something very different she heard “cancer” and thought how do I fight this and win.
She had an amazing oncology team that outfitted her with an aggressive and varied game plan and a thing called a port; but the most important thing they both shared was an optimistic attitude. When they gave her the port in her chest where she would get her chemotherapy , she was not upset that she had to get a port or that she was having chemicals placed in her body and hoping they would work; nope she was upset she was not the first person to get the port , she was number two. When they decided on radiation she got her long beautiful brown hair cut off into a short cute style and donated it for other people to get a wig; after all hers would grow back when she was in remission. She had an amazing belief that God would not have given her this to battle if she were not capable. She believed it was given to her because she was supposed to teach someone, somewhere, something and it may not be during her battle or during her remission it may be long after her death ; but if one person was saved or one person learned something than the fight was worth it.
We took the time we were given and made amazing memories going to see our favorite places like Red Rocks or the buffalo herd, we also made memories and new traditions when we spent time in the hospital. If we were there during football season we ordered pizza and had it delivered to her room and then invited her nurses to come have a snack and catch up on the score. We enjoyed watching animated movies and we even got her a Gameboy to play the mind teaser games while she sat for hours getting chemo. In January, we received word our dad had suddenly passed, my parents had divorced when I was two. Her concern while she was in a hospital bed was not herself, but was us , her kids. Several months later we got a phone call that her father had unexpectedly passed away. She was a daddy’s girl and was unable to travel to his funeral so we filmed it for her. When we were in another state, our “sister from another mister”, her friend from work who was like a daughter to her, stayed with her while we buried our dad. It was on this trip we almost lost her, her blood pressure was so low they said they didn’t know how she was awake and talking. She persevered.
As she grew weaker we made final plans, it was an enormously painful task asking her to decide where she wanted to be buried, what songs she wanted played and writing her will and her making the decision to not be resuscitated. Her wish was to die at home and we wanted to give her that. She had sacrificed her life for us, given us everything we could have ever wanted. She fought incredibly hard, she was my superman and I was watching her die and there was nothing I could do about it. She said that her goal was just to make it to January, so that her kids didn’t lose both their parents in the same year, but she would not make it. I remember begging God to either heal her or take her but I was not fair to make her stay just for us. It was not fair to make her suffer when she gave us such a wonderful life, after all we had each other to lean on. She deserved to be at peace.
Fifteen days after her fifty-fifth birthday we made the calls to have everyone say their goodbyes. She was aware of where she was so we brought photographs and blankets and loved on her, the nurses said she knew we were there but she couldn’t respond or open her eyes or anything. I gave her a kiss and told her it was okay to go, that she didn’t have to stay here in pain for us, she deserved to be happy and at peace with the family in heaven.
I stayed with her and she passed on October 18, 2007.
This year marks ten years since she has been gone, she has missed so much. I enlisted in the military, my brother is dating a wonderful woman, my sister got married and her and her wife have an adorable son. I got married and have a now five year old step son, bought a house and will complete my college degree this year. She gave us life and taught us about everything from friendship to how to do laundry but most importantly she taught us to never give up because even cancer can be beaten. It was not a physical victory, but victory for the soul.
No matter what happened through her illness she never let it define her as a person. She was able to complete one last thing on her bucket list when she earned her wings: she was able to be an organ donor and donate her eyes to someone who needed them. Even in her death she was able to put someone else before herself ! Please if you are fighting this illness know that there is hope, it may not end up being a physical victory but if you keep your sense of humor and your love of life than cancer can never truly be victorious. God bless you on your trip down the yellow-brick road!
In loving memory: Patricia Fay Hartlep (October 3, 1952- October 18, 2007)
Thank you to all those who care for those fighting! Bless those who love those struggling and rejoice for those who have earned their wings!
Based on statistics, lung cancer has a five-year survival rate of 17.4%. For many, it’s a death sentence but for me, this meant nothing since I am not a statistic. I came to the realization that, everyone else’s cancer is not my cancer, because my journey belongs to me, my symptoms were different, and the recovery process seems to be a lifelong event.
My journey began in September of 2013, with the stigma that somehow I brought this on myself, that it was self-inflicted, or maybe I deserved it. I was told no two cancers were alike, and this cancer would belong to me, for as long as I fought. So there was no need to do Internet searches, book readings, or viewing statistics, because this would only make me feel as though, I was given a death sentence. And those who told me that, were absolutely correct. However, I did Internet searches, book readings and viewed statistics, only to discover that over one-half of people diagnosed with lung cancer die within the first year of being diagnosed. I found out, every 2 ½ minutes, someone else is diagnosed, and every 3 minutes; someone dies of lung cancer. I didn’t even know I had cancer at this time, but the grave digging had already begun.
Due to the information I had gathered over the Internet, I found my symptoms, were quite different from others. I had gone to the emergency room due to a stomach ache, which continually worsened over the next week, and I just couldn’t tolerate the pain any longer. The ER physician decided he wanted to do a CT scan of my abdominal region. An hour later, he returned with not many concerns for the pain I was experiencing, but instead with the nodules he found in my left lung. This was the only thing I heard, because I could only see his lips moving, but couldn’t hear his words. The only real memory of that day, was the machines beeping and the orange drink before the scan being nasty. He referred me to be seen by a pulmonary doctor, immediately.
My pulmonary doctor wanted to do a PET scan; the nodules lit up my cancer like the 4th of July. On November 15th, immediately following the results, I was whisked away, thinking the nodules will come out, and all will be right with my world. I woke up unable to move, and my daughter standing over my bed crying; she would be the one to deliver the news; I had lung cancer and they had removed my left lower lobe. My only memory, of my actions following this news, was smiling, and turning my head away, to cry myself back to sleep. I was discharged from the hospital four days later to start my chemo therapy, and my recovery process. My doctors wanted to go after this cancer very aggressively, and prescribe me to endure chemotherapy, using 2 of the harshest medicines available, Cisplatin/Alimta. I was a very lucky woman not to experience a lot of the effects from chemotherapy that others had endured. Everything was injected through a power port, located in my chest; the taste of the medicine was like chewing on a metal can. My doctors believe my good health and attitude prior to the diagnosis, had prepared me for this journey I was going through, and it’s what got me through it.
My recovery process seems to be a lifelong event, and every day, I am faced with what seems to be a new obstacle. Lyrics to a John Lennon song say it best: “One thing you can’t hide is when you’re crippled inside.” Over the course of the last two years, I have tried to stay positive. I have made jokes about myself, and this disease, because this is how I have been able to deal with this tough situation. I have cried, and screamed, going through every emotion possible, and just now; I am starting to recognize, that person who looks back at me in the mirror. My brain operates a little differently; my heart has hardened; my ears don’t hear as well; and at times; I have an overwhelming feeling of sadness, but yes, it appears every piece of my body has been affected by this damn disease. I know I will find my way, and I will survive, but for some reason, at times, I tend to be struggling really hard just to get started. The cancer not only has affected me, but it has also affected those around me. I have family members, whom I barely have a relationship with; due to the fact, I never heard from them through this whole process. Resentment is a really hard pill to swallow, but I just can’t seem to let that one go. My marriage of 22 years came to an end; we were more strangers, than we were partners. Instead of this disease bringing us together, it drove us farther apart. I even lost my job of six years, two days after I got my first clean scan. The lung cancer roller coaster sucks...everyone says to take one day at a time, but really? I don’t want to take one day at a time; that’s not how I live my life.
My journey has taken me to places; I couldn’t even imagine. I will forever bear the scars, and experience some symptoms, but the recovery process will be mine, for a lifetime. As far as I can see, their cancer has been nothing like my cancer. It didn’t cost me my life, my hair, or I didn’t even lose weight. Through the entire journey, I was constantly told, “You don’t even look sick.” One of the greatest side effects I experienced was the ability me to look at my life, take charge, and make changes to it on my terms. It’s all about being in a happy productive place, so I have removed individuals from my life, and added some new ones, doing things I had never done before. I have gone back to school, something I have wanted to do for years, but never believed in me enough, to do it. I believe everything happens for a reason, and I as much as cancer sucks, it made me take a look at my life, take control, and start living again. For that, I will be forever grateful.
I have been though a lot over the course of the past 2 years, but to be where I am and who I am today…..I would do it all again.
10 years ago I was diagnosed with NSCLC and was told that with an operation and treatment, I had 3-5 years to live .
After an upper left lobe resection followed by systemic chemo I went into remission and enjoyed 2 1/2 years of precious time. Then, a checkup revealed that I had 17 mets to my liver and a couple of “hot spots” in my lungs. At that time I joined the already very full ranks of stage 4 NSCLC patients. The day I was to begin another course of chemo, my oncologist recommended that I try a clinical trial, so I did.
My attitude then and my attitude now is “What have I got to lose?”. That clinical trial knocked all the cancer away and gave me more time, but the nature of NSCLC is sneaky and persistent. Things flared up again after about a year and a half and for several years I was put on different cocktails of drugs that gradually were being approved by the FDA. During that time I continued to teach school and I lived a full and productive life.
There were some significant bumps along the way, but I’m still here. Flashing forward to the present, I am now on my 5th clinical trial which is successfully knocking back my cancer and giving me more time. Participating in clinical trials have kept me going in this chess match. They have put cancer in check several times and are key to bridging the gap from treatment to treatment.
I have seen tremendous advances during these 10 years and I feel the cure is just around the corner. I will continue to take advantage of clinical trials because I’m just too busy with life.
Also, I want more time. Time for family and friends. Time to see grandchildren being born and grow up. I just want time.
Clinical trials have made that possible.
Last year, after seventeen months on Tarceva, I got the news. My lung cancer was off it's diet and was starting to get fat again. It was time to try a different treatment. But what was left? Seeing my doctor's scrunched-up face while he stared at the floor said it all: He had run out of hope that anything would work.
Chemo and Avastin had kept my cancer at bay before Tarceva, and together these three drugs had given me three extra years of life. But they had all eventually run their course. What was left? The cancer was in all lobes of my lungs and had spread to my bones, so radiation wasn't an option.
Luckily, I had a secret weapon in my arsenal. I read.
I found a blog by a person with remarkably similar circumstances to my own, including starting Tarceva at almost exactly the same time, and even including having radiation to our hips at about the same time. Craig and I became friends, and have been in close contact ever since.
It was difficult to watch when the Tarceva stopped working for Craig. Fortunately, his oncologist was on top of the research, and referred him to a clinical trial for AZD9291. This is a drug specifically targeted for people who are post-Tarceva, and whose EGFR mutation has further mutated to be T790 positive. The drug was wildly successful for Craig, but that is a story for him to tell.
The good news for me is that, three months after he started this drug, I was in need of a new treatment option, and knew about this drug that my own oncologist didn't even know was available through a clinical trial.
I got all the contact info from Craig, and immediately began efforts to get into this clinical trial. This was far more dramatic than I had hoped. The clinical trial was closing in one week, and the clinical trial coordinator was going on vacation at the end of the day that I found out. I had less than eight hours to get eight years of medical records faxed from two hospitals and two clinics if I was going to get into this trial!
Bureaucracy, people on vacations, other people not answering their phones, and the need for a sense of urgency that medical records people rarely encounter all added to the challenge. I spent the entire day working the phones and emailing people to light a fire under anyone and everyone who could assist in getting these records for me. At the end of the day, at 5:30, the clinical trial coordinator emailed to tell me that I had an appointment the following Tuesday for my interview to be admitted to the program. She hit the Send button on that email, and then started her vacation.
Just made it!
The part I haven't mentioned is that I live in Portland, and that the trial is a thousand miles from my home, in San Diego. My wife Genevieve and I flew to that first appointment, both excited and apprehensive about what I needed to do to be accepted. I had already made clear that I was ready to move to San Diego, do back flips, and turn into a Wookie if necessary to get into this trial. Was this interview about motivation? Nah. It turns out this appointment was mostly about paperwork... AND letting me know that they would need to run a few tests to determine if I was a fit for the program.
The "few tests" turned out to be a hefty amount of blood and urine samples, a series of EKG's, an echocardiogram, an eye exam, and a needle biopsy. The important one was the biopsy, which would determine whether I had the right genetic mutation. This involved getting me nice and groggy, getting onto a CT table, taking images, then inserting the needle as close to the tumor as they could get. Then they took another image, got a little closer to the tumor, and repeated until they got the needed biopsy. This involved a couple of sleepy hours and absolutely no pain.
An EKG sounds more like the jolt that brought Frankenstein to life than the passive monitoring that goes on. Sticky vinyl circles with metal tips, slightly larger than a quarter, were placed in 12 locations on my chest, arms and legs. Leads were attached, and my heart activity was monitored. The first time I did this, the protocol was to get readings once an hour, and then once every other hour, over a twelve-hour period, then come back the next morning for one last measurement, so they could get a 24-hour set of readings. The only pain involved was the removal of chest hair when the sticky circles were pulled off.
The echocardiogram is pretty simple. I laid on my side with my shirt off while a tech put some jelly on what looked like a microphone, and pressed it against my ribs while he looked at the images. The first time they did this I looked at the image, and asked the tech if it was a boy or a girl. He smirked. I guess he's heard that one before. I wore a hospital gown open in the front, and they gave me a blanket when I got a little cold. Twice I have fallen asleep while they were testing me. I plan to do it again. It's a nice quiet environment for a nap.
The eye exam is just like any other eye exam. It was probably time to get them checked again anyway.
Years ago I had a chemo port, and my doctor gave me "port cream" (lidocaine) to use before the needle poke. Since then, I have used that cream every time I have blood drawn. I put the cream on an hour before I'm going to get poked, and cover it with a 4-inch clear plastic bandage. I look away when they insert the needle. Often I can't even tell when the needle has gone in.
After initially getting accepted into the trial, I had to come back every three weeks for an appointment with the doctor, a new CT scan, blood and urine samples, and an EKG (only one each time). The schedule thinned to once every six weeks after the first six months. Every three months i have another nap/echocardiogram.
I've mentioned everything about this so far other than the treatment itself. Here is the treatment: I take a pill once a day. That's it. The side effects have been very minor. Dry skin and hair, occasional split skin around my fingernails, and a few mouth sores. This has been easier than Tarceva. That makes sense, because the cutting edge drugs are becoming better targeted with each new generation.
The results: That's the exciting part! In the first six weeks, my cancer shrunk by two-thirds! Since then, almost a year now, the cancer has remained stable!
I'm a big believer in clinical trials. After lung cancer treatment had remained pretty much unchanged for half a century, other than better management of side effects, the new treatments coming out are having spectacular results. Sometimes those results even end up with the words we all are waiting to hear: "No evidence of disease."
I plan on hanging around long enough to hear those words. Would I go into another clinical trial if/when this drug stops working?
Where do I sign up?
My cousin Kathi, who was more like a sister to me, died of lung cancer in December 2003. She was 46 years old. At the time, I didn’t know the first thing about lung cancer. Since Kathi smoked for years, I thought that’s why she got lung cancer. I didn’t think too much more about lung cancer for the next year, although I thought about Kathi every day.
Then, about a year later, I had a sharp pain in the right side of my chest, like a knife stabbing through my chest and back. I thought that I might be having a heart attack. I exercised regularly, ate fairly well, and was always concerned about heart disease because my dad had died of a heart attack at age 40 and 3 of my grandparents had died of heart disease. So I knew it ran in my family. My husband took me to the emergency room and after lots and lots of tests, it was determined that my heart was fine, but they found this tiny little mass on my left lung. I was told by my family doctor that it was very possibly lung cancer. But my pain was on the right side…. The tumor was on my left lung. This didn’t make any sense!
They never did find out what that pain was. It definitely wasn’t the cancer. All I can say is that somebody was trying to tell me something. If I had not gone to the emergency room that day, my cancer would most likely not have been diagnosed until it was too late, like Kathi. After a pet scan, I was sent to University of Maryland in Baltimore to see a lung cancer specialist. They immediately did a lung biopsy which confirmed their suspicion. It was non small cell lung cancer. How could I have lung cancer? I was only 46, I didn’t smoke, I exercised 5 to 6 times a week, I had regular check ups, I ate well….how could I have lung cancer? I immediately got on the internet and began researching lung cancer. What I saw was very disturbing, to say the least. The only statistic that I could remember from that evening was that 95% of lung cancer patients do not survive more than 5 years! I was just devastated.
I wouldn’t be able to see my daughters grow up, I wouldn’t be able to see my grandchildren. Now how was I going to tell my daughters? They had just watched my cousin die of lung cancer! I told my younger daughter first, she was 11 years old at the time. As I looked at her, a fierce feeling of determination came over me. I WILL fight this, and I WILL beat this! I have to. My kids need me and I need them! I explained to her that mine was a different type of lung cancer than Kathi had and that it was found very early, unlike Kathi’s. I was trying to downplay it as much as I could to prevent her from worrying. And it worked. Several months later I was sitting at my desk at home, and she saw a Lung Cancer book on my desk. She came over, picked up the book, read the title and said “Oh Mom, you didn’t even have it that bad!”. My older daughter was away at college at the time, so I called her and asked her to meet me for lunch. She was 20 years old. I explained it to her just like I did to my younger daughter. They both seemed to take it very well.
I was then sent for more tests and finally some good news! The cancer had not spread to my lymph nodes. It looked to be contained in one of the two lobes of my left lung. This meant that I was a candidate for surgery, which meant the best chance of a cure! I was diagnosed at Stage 1A. So, on April 20, 2005 I had the upper left lobe of my lung removed at the University of Maryland Medical Center. I was able to have VATS surgery, Video Assisted Thoracic Surgery. The day I came home from the hospital, I tried to walk up the stairs at my house. About half way up, I stopped and couldn’t breathe. I had to sit on the step for about 5 minutes to catch my breath. It was then that I realized that life would probably never be “normal” again. But, I was on the treadmill walking two weeks after surgery and back in spinning classes 4 weeks after surgery. I was determined to get back on that spinning bike and continue like I still had two lungs!
The first question people ask me when I tell them that I am a lung cancer survivor is “DID YOU SMOKE?” I think non-smokers ask because they hope I’ll say yes, so they can feel safe. But none of us is “safe”. What’s so awful about that question is that if you are a smoker, you probably feel horrible about it. Almost everyone who smokes wants to quit – the majority of the people started when they were young and got addicted. Anyone who is diagnosed with cancer will ask themselves, “Why Me” and try to figure it out. The thought that you may have brought it on yourself is devastating. Do they deserve the disease because they smoked? NO! No one deserves this horrible disease! Today LC needs to be on the radar screen for everyone, not just people who smoke. I hope in the years to come LC will get the recognition of other cancers, and a cure will be found.
I tried to return to my life before cancer, but found it was impossible. My whole world had been shaken and I realized that I would never return to the life I had led before. I was a survivor and I was determined to help other people diagnosed with lung cancer.
The best thing that I found on the internet while researching lung cancer, was the Lung Cancer Support Community. It was an on-line community of over 7000 members who had been affected by lung cancer. Some were survivors, some were caregivers, but they were the most caring bunch of people I have ever known, and I certainly needed that. Although I will have to get a CT scan and visit my doctor in Baltimore every year for the rest of my life, it is a small price to pay for saving my life.
By far, my biggest challenge has been conquering the fear of recurrence. Some days are almost worry free, others are not. The fear is always there. But I’m proud to say that I am now 10 years cancer free! After 5 years the doctors call you “cured”. What a nice word. I may be cured, but I am still a member of the cancer community and always will be. I will continue to advocate for lung cancer research until we have a reliable early detection method and adequate funding for research so that everyone else can be as lucky as I am!
When my Stage IV lung cancer was discovered in October 2012, I was, as far as I knew, as healthy as I have ever been in my life. I was playing agility with my two dogs three or four nights a week and every weekend. For those who do not know, agility takes a lot of stamina and energy! (https://www.youtube.com/watch?v=OCFrUCu6F_g)
I went to the doctor because I kept gaining weight. No matter what I did, I couldn't lose it. Since I had always been tall and thin, the extra weight was disturbing me. I self-diagnosed thyroid issues.
I am not a doctor goer. When I went to the doctor on that fateful October day, it was the first time I had been in 10 or more years. I chose the doctor based on her name – I knew someone else who had the same name – and the fact that she took my insurance. This was the luckiest choice I could have ever made.
The doctor felt a very, very small knot on my collarbone. She sent me for a CT scan. That day.
She called in a few days to tell me that my thyroid was fine, but I had some strange cell activity in my lungs. I needed a PET scan, she said.
I had never heard of a PET scan. When we got off of the phone, I immediately began to research. And, what I found was scary. PET scans are used to determine malignant activity. Cancer????? Me????? But, I was as healthy as I had ever been.
Sure enough, I was diagnosed with cancer. Specifically, I was told I had Stage IV adenocarcinoma of the lungs that was both inoperable and could not be radiated. Chemotherapy was my only option.
I had watched my father die of lung cancer back when I was in my early 20s. His cancer was also discovered by accident, during a routine physical required by his place of employment. Six months later, at barely 49, my dad died. He went through hell during those six months after diagnosis, suffering through chemo and radiation. I had always said chemotherapy was something I would never, ever do.
Until it was my only choice.
I began chemo – a cocktail of Avastin, Alimta, and carboplatin – in early December 2012. I was one of those people who had a difficult time. No matter what nausea medicine we tried, I was incredibly sick the first week after an infusion. Fortunately, my health improved by leaps and bounds during weeks two and three. I was feeling pretty good when it was time for yet another infusion.
I underwent four infusions of the three drugs. My tumors responded. They didn't go away, but they shrank. After four treatments, my oncologist decided to change the treatment. For four more treatments, every three weeks, I received Avastin. I am one of the unusual ones. Avastin made me as sick as the three-chemo infusions had.
However, my tumors had responded. They shrank. They didn't spread. My oncologist was happy. He decided to give my body a break and stop all treatments for awhile. He expected my tumors to remain stable. But, a CT scan revealed that it wasn't to be. The tumors had grown back to nearly the size they had been prior to beginning treatments.
The oncologist told me that I basically had two choices. I could begin another line of chemo, with a drug that wasn't as effective and that had worse side effects than those I had already had. Or, I could participate in a clinical trial. It was not a difficult decision for me at all. I chose to go into a clinical trial.
I really didn't have great expectations for extending my own life, but I wanted to help others coming up behind me. So, I went to the UT Southwestern Medical Center, one of 69 NCI-designated cancer centers, in July 2013.
Nearly immediately, I was fortunate enough to get into a Phase III clinical trial. In this Phase, the drug or treatment is given to many people to confirm its effectiveness, monitor side effects, compare it to other treatments, and collect information that will allow the drug or treatment to be used safely. In my trial, the efficacy of the experimental treatment, immunotherapy, was compared to a known and common chemotherapy, Docetaxel. I was happy that I drew the straw that allowed me to receive the experimental drug.
Entering the clinical trial was the best thing that could have ever happened.
I now have been in the trial for over two years. I responded to it
immediately. Since I began the trial, my tumors have been completely stable. I have very, very few side effects. The worst happened early on – my thyroid quit working properly, so I now take a little pill once a day.
I go every two weeks for blood tests, doctor visit, and treatment. The treatment itself takes an hour to drip. Until recently, I was required to have CT scans every 6 weeks. However, the drug company amended the trial plan and I now have scans every 12 weeks.
The clinical trial and the immunotherapy gave my life back to me. I am able to live fully and completely – at a time when no one expected me to still be alive, much less living well!
I am: a lung cancer survivor
I was diagnosed with SCLC January 2009 and as of today, 10/6/15, there is nothing in my lung except a scar from radiation. No sign of cancer. I beat the odds. I had 5 rounds of Chemo and started chest radiation after the second round. I started PCI 2 weeks after the final chest radiation. My radiologist gave me a lower dosage for the PCI and an additional 2 treatments because I also have MS and PCI causes demyelination.
I am cold all the time. I used to be hot. I don't sleep well. I am scared that it will return somewhere else in my body.
You may have heard the saying “I have cancer but it doesn't have me!” I say B--S---! You never get over the scare. I am a 67 year old female. There is hope!
I am: a lung cancer survivor
My hubby of 19 years, Jeff was diagnosed with stage 4 NSCLC on July 31, 2015. He has the EFGR mutation and is responding well to Tarceva. He is 49, never smoker. He has three tumors in his lungs and a page and a half of mets in his bones! Lots of tumors. He lost 35lbs and he was already a lean bean. I tell you all this, so you know there is hope. He was in bed for two and a half months. Two days ago he was climbing a ladder and swinging a hammer. He was on 75mcg of Fentanyl and now is is NO pain medication. We are LIVING and fighting. We are hopeful of long term disease management. We know the Tarceva is critical but we also know LOVE, fresh air, positive thoughts and respect for the cancer has given him extra strength to fight harder. Our wish to all who battle this awful disease: is that you all find the good in your situation. Look for it; it is there. This is life changing and you can change for the best. Thanks for reading!
I am: a loved one of someone with lung cancer