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Lung Cancer Stories

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LaurenH

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!

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LaurenH

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.”

 

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Allison and her husband Keith, with their children Daniel, Peter, Megan, and Grant.

LaurenH

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.

LaurenH

Ruthe Cain

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.

LaurenH

Mary Spencer

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!

KatieB

Trish Strulson

My Journey Belongs to Me

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.
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KatieB

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.   

 

KatieB

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?
 

KatieB

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!

KatieB

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

KatieB

Submitted by Bobbie

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

KatieB

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

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