Steff reacted to LUNGevityKristin for a blog entry, Melanoma Immunotherapy Offers Hope for Lung Cancer
By Kim Polacek, APR, CPRC - April 27, 2020
An immunotherapy that has demonstrated durable responses in patients with melanoma is now showing promise for those with non-small cell lung cancer. Tumor infiltrating lymphocyte therapy, or “TIL,” uses a patient’s own live immune cells to fight cancer. Surgeons remove a patient’s tumor and, in the lab, dissect and culture the T cells inside. These cells, which were able to detect and invade the tumor, are then multiplied by the billions — a process that takes at least one month. Once infused back into the patient, the army of T cells can seek and kill the cancer cells.
“We know many of the immunotherapies that work well in melanoma can also benefit lung cancer patients. With that in mind, a group of investigators at Moffitt Cancer Center initiated a trial to determine if non-small cell lung cancer patients could have a similar response to TIL therapy,” said Dr. Ben Creelan, principal investigator of the phase 1 trial and associate member of the Department of Thoracic Oncology at Moffitt.
For the study, Moffitt recruited 20 patients with metastatic, non-small cell lung cancer. While their TIL therapy was being manufactured in the lab, they were treated with a different type of immunotherapy, a PD-1 inhibitor named Opdivo. Sixteen of the 20 patients saw tumor growth despite treatment with Opdivo. Those patients were then infused with personalized TIL therapy.
"When we launched the study, we never expected to see complete responses. That is very rare in lung cancer. However, two patients did achieve a complete response, meaning no evidence of disease on their scans, from the personalized TIL therapy. Another one had a complete response with Opdivo alone."
Dr. Ben Creelan with Sheri Pummill, a lung cancer patient who had a complete response on the TIL therapy trial.
“When we launched the study, we never expected to see complete responses. That is very rare in lung cancer. However, two patients did achieve a complete response, meaning no evidence of disease on their scans, from the personalized TIL therapy. Another one had a complete response with Opdivo alone,” said Creelan.
He said several other patients on the trial showed partial response to TIL therapy, making the overall response rate from the study at least 25%. Complete results from the phase 1 trial will be presented during the American Association for Cancer Research Annual Meeting.
“Another interesting thing to point out is that biomarkers, such as driver mutations, do not rule out a potential benefit with TIL therapy. We have patients with several types of cancer mutations on the trial, and their clinical benefit seems to be independent of mutation type,” noted Creelan.
Sheri Pummill's scans showing her response to TIL therapy. This is one of several lesions that responded to the therapy.
Moffitt investigators are now looking at ways to make TIL therapy more accessible to more patients, both in terms of production time and tolerability. They are also researching how to enhance the TIL to increase the response rate. Moffitt is also opening Iovance Biotherapeutics’ clinical trial, which combines pembrolizumab with TIL for Stage 4 lung cancer.
Steff reacted to DanielleP for a blog entry, A Strange New World...Or Is It?
I am sure I am not alone when I say that the past few weeks have felt like a few years. I cannot imagine the heartbreak of those who have lost someone to this new viral threat, and the fear felt by those who have been diagnosed or who love someone who has been diagnosed.
As we all hunker down as best we can for the greater good, several concerns float through my mind, like stones skipping on water. I am sure this is true for all of us who are caregivers. We may be pushing through the laundry or the dishes or the Spring cleaning while we are experiencing this odd calendar-clearing, but the backs of our minds are full of what-ifs. And yet, as new and strange as this situation truly is, the stones skipping on the water--the what-ifs in the backs of our minds--all feel soberingly familiar, don't they?
Quicker and shorter shopping trips. A meditative focus on handwashing. A bundling up of the medically vulnerable loved one away from exposure. Removal from social situations because the fun that would be had just isn't worth the risk. A gathering of resources and emergency plans so that they are at-hand. The medical team on speed dial. An assumption that all pathogens everywhere are threats to the integrity of one's health and peace of mind. A vigilant awareness of the simple, icky "everywhereness" of the germs. The steps that we are dutifully following as given by experts for the current crisis are substantially similar to the steps we tend to take even on a normal day. It is true that our lives are rife with precautions that are over and above what most folks have to think about in addition to their regular routines.
As I see how my friends, colleagues, and acquaintances are handling this sudden requirement to stay home for the foreseeable future, the differences between the daily itinerary of a caregiver and the daily itinerary of someone who is not a caregiver become abrasively clear. The folks who are clearly bored within their four walls baffle me the most: do they not have a medication schedule to keep up? Do they not have dietary restrictions to research before making dinner? Do they not have piles of bedclothes that must be kept immaculately clean? The folks who are bouncing off the ceiling trying to find something to do with their newfound time at home are like exotic creatures to me. What would that be like? I've been doing this for so long that I don't remember a to-do list that wasn't pages deep that all related just to the logistics of this house and the needs of the people inside it. To put it briefly and bluntly: to all my friends who are now working from home, welcome to the world of a caregiver. I am always working when I am at home, and when I am working, I am always at home.
I say this all with my tongue in my cheek, of course, with nothing but support and understanding for all my friends who have been abruptly dumped into this situation. But for my brotherhood and sisterhood of caregivers, I say: do not be discouraged by the inconveniences of the sheltering in place. Rather, try and be encouraged by all the ways in which we already know how to deal with isolation and medical uncertainty. Unlike our friends who are not in this boat with us, we know that we are always waiting for shoes to drop. We never know which shoe it will be, but we know one will fall. We are always expecting the unexpected. We are always wondering what new diagnosis might arise, and always wondering how to best seek help for it. So, we have solid plans in place. Blueprints with well-worn edges. Our non-caregiving compatriots do not have the benefit of that foresight. This is not to say that there aren't practical problems in our laps right now that are aggravated by the current state of affairs. To be sure, there are many. There are prescription shortages, doctor unavailability, and treatment postponements, just to name a few; and, of course, the elephant in the room: the stultifying fear of a bug that seems to target our very worst fears.
But...I daresay we have already imagined these contingencies many times before, and we have developed work-arounds for them just like an immune system develops antibodies. We are, indeed, an extra "immune system" of sorts for our loved ones. A barrier. A first alert system.
We are grieving this international crisis together, and we are fearing deeply for our loved ones for obvious reasons, but take heart in this one thing if nothing else: we have trained for this. We have lived this possibility. Many of us have even had dress rehearsals. I offer you these thoughts in love and solidarity, in hopes that the only-natural fear will not immobilize you, but mobilize you, by helping you to recognize your strength. Let's turn our efforts outwards, to the best extent that we can under the circumstances, and help those who are not prepared. Let's band together in hope and action. We're all in this together. <3
Steff reacted to Susan Cornett for a blog entry, 4 years!
Today marks 4 years of survival! By most standards, my path hasn't been as difficult as others. There have definitely been highs - when my hair grew back, my lashes grew in longer - and lows - two recurrences and a secondary cancer diagnosis. But as I say often - I'M STILL HERE! I tell my story to anyone who will listen. People need to know that lung cancer doesn't have to be an automatic death sentence. Does it suck? Yes. Will it change your life? Definitely. But you move forward, one step at a time. Forward is forward ,no matter the speed.
I am looking forward to the Breathe Deep Denton event in April. I enjoy visiting with the other survivors and bringing attention to this cause. I've also been asked to speak at a function in March so I'll be sharing my story again. The more the public understands lung cancer and all of its causes, the better our funding will be for research.
Most importantly, though, is this: I stumbled across this site one night when I was looking for answers. I have met wonderful friends - in person and online - here. Those friends have made this journey easier. Thank you, all.
Steff reacted to Tom Galli for a blog entry, Celebrating Sixteen Years!
I continue the tradition of anointing my toes with paint for each year I survive this horrid disease. Till year 14, I applied red paint; now it is Lungevity blue. The tradition of painting a toes was started by Dr. Phil Berman, a never smoker radiologist diagnosed with Stage IV, NSCLC. He started RedToeNail.com, an early online cancer survivor blog and painted 5 toes of life before lung cancer claimed him. My tenure of life is a message of hope. If I can live, so can you.
Stay the course.
Steff reacted to Tom Galli for a blog entry, Twice A Veteran
I’m an armed forces veteran. Also, a late stage diagnosed lung cancer survivor veteran. A smoker, I once had little doubt that smoking caused my lung cancer. Yet almost everyone in my immediate family smoked and none developed the disease. Could the unique hazards of armed forces training and warfare played a role in my disease?
Looking back, early in my career were demolition projects involving World War II era structures that were filled with asbestos. On deployment, burn pits predominated and everything was mixed with diesel fuel and burned in cut-down 55 gallon drums. As an engineer soldier, we trained extensively with demolitions and smoke and dust was a common exposure. I also directed fabrication of aluminum armored vehicles that included fumes and vapor from aluminum welding and superfine dust from machining. Lest I forget, there was the omnipresent smoke filled haze that lingered for months after Saddam decided to burn the Kuwait oil fields. I’ve inhaled a lot of stuff during the course of my Army career and maybe that played a role in the development of my lung cancer.
Fortunately, there are new tools and programs for armed forces veterans that might help avoid a late-stage diagnosis. The Veterans Administration has two important programs to early detect lung cancer: VA-PALS, a low dose CT screening program for at risk vets and the Gulf War Registry Health Exam for veterans. LUNGevity is adding its weight to support veterans. We’ve just established a Veterans Forum in the Lung Cancer Support Community that is now open as a support and information resource. A low dose CT scan is a good idea for those who served.
Stay the course.
Steff reacted to DanielleP for a blog entry, Don’t Tell Me What to Do; HELP Me Do It! Or: If You Give a Caregiver a Cookie…
I know it’s happened to all of us at some point during our experience as caregivers: the “self-care” lecture. Eat a vegetable! Take a stroll! Get to the gym, even for fifteen minutes! Get a pedicure!
And on, and on, and on…
How do these conversations make you feel?
I confess that they frustrated me immensely in the earliest days and weeks after my mom’s diagnosis. I was actively offended any time that someone had the audacity to suggest that anything was more important or more time-sensitive than navigating the maze of new information that we were tossed into. I just knew that anyone who could suggest I take time for frivolous activities was way out of touch with reality, and did not understand what I was up against. Worse: I had a feeling in my bones that they did not WANT to try and understand what I was up against. My family’s new normal was in conflict with the suggestor’s point of view on the world where everything was calm and copacetic and pedicures were still a possibility because there wasn’t too much else pressing.
Long story short, my friends: I was a wreck anytime someone suggested I take care of myself first. Furious and righteously indignant.
One of the most hurtful things I have ever taken to heart (perhaps unfairly, in retrospect) was an extended family member telling me to go get a manicure after I had texted her a photo of a cheap-but-cool new ring I had just bought while running errands. Her words cut me to the core. How dare she? After all, did she not know what was going on? Why did I deserve that amount of downtime, and how would I fit it in if I did, with all the stuff that needed doing? I was so close to saying “well, sure, if you want to fly here and relieve me for a couple hours!”
Oh, hold on. Wait a minute. I just looked in a mirror. What’s this I see?
I am STILL that person, still feeling those same feelings. They are hard to cast off, even four years after diagnosis, and even with our family somewhat regaining its sea legs and setting sail more confidently into the future than we did when lung cancer was new. I don’t feel this rage or umbrage as often anymore, especially since my parents themselves have been encouraging me to go and do and play and frolic, and I can honestly say I’ve had a few manicures since the “cruel” text. But, to this day, I definitely still build an immediate barrier between myself and any interloper who deigns to tell me to eat healthy and take more walks “because, after all, you can’t pour from an empty vessel.”
(Ohhhh how the empty vessel analogy used to boil my blood!)
I build the wall because something in my heart tells me that the person who would say those things does not understand me, my family, my parents’ illnesses, my priorities, my choices, or my daily schedule enough to be allowed to weigh in on what I do.
Here’s my thinking: no adult is unaware of the need to eat more vegetables and take more strolls and get more sleep. Nobody in their right mind would deny that this is the ideal. But a serious diagnosis upsets every single ideal that a person and their loved ones have embraced and looked forward to. The anticipated and planned future of day to day or year to year fades away, and survival becomes moment to moment. Anyone who has been through it knows this intimately, and I can’t help but doubt the wisdom (not the good intentions, mind you, but the actual wisdom) of those who have not been through this minefield to understand the situation well enough to tell me to eat a vegetable and have it be sagely helpful to my needs. In fact, I recently told a good friend, a fellow caregiver, that “eat better and get more sleep” must have become society’s newest “bless you!,” because I’m hearing it given automatically after telling folks about my situation, just as automatically as they would bless me if I had sneezed.
To put things more bluntly: anyone who has not experienced the particular choice of sacrifice for the sake of a loved one’s health/convenience/safety (etc) that a caregiver makes every day has no business telling me what to do, because they have no comprehension of the logistics of my day, and all that must fit inside it, and all the priorities that are NOT me or mine.
Don’t get me wrong: I am not advocating for a lack of exercise, sleep, or vegetables. Do I even need to include that disclaimer? I don’t live under a rock and I wasn’t born last night. But that is precisely my point: we must appreciate the intelligence and common sense of caregivers enough to know that such vapid advice does not add information or value to the caregiver’s toolbox. Instead, we as caregivers must encourage more widespread awareness of our situations and all they entail and require, so that people who do have the desire and intention to help can contribute more meaningfully than by speaking platitudes.
In other words: I frequently advise extended family and friends of cancer patients to refrain from instructing the caregiver, and to instead LEARN from the caregiver. Don’t tell a caregiver what to do. HELP the caregiver do what he needs to do. If you want him to have time to go fishing or get to the gym, then offer to cook a meal for his family. Better yet, just cook the meal and bring it over, without pressuring the afflicted family to socialize if they do not wish to.
If you are trying to support a caregiver, and if you remember nothing else I say here, remember this: try and understand that checking things off the “to-do” list can often be the most satisfying “self-care” that there is. Don’t guilt me for not eating vegetables or not going to the coffee shop when that same thirty minutes could be used to do a chore that’s been bugging me for weeks. Please trust the person actually living in the situation to know what would de-stress the person the most. Do not insert your assumptions. In fact, feel free to ask how you can encourage the caregiver in completing that stressful task. Don’t automatically resort to the incentives system you might use with a child (“hey, let’s get ice cream if you finish that paperwork by noon!”), but ask the caregiver in a meaningful way what support structure he or she needs in order to knock it out (and, hey, it might just be ice cream—the point is to not assume, and not to place yourself in a position of authority).
If you are a caregiver, and if you remember nothing else I say here, remember this: encourage those in your life (who honestly want to help) to think of a concrete skill they have or task they could fit into their own busy schedules, and offer them the advice that it would be lovely if they could use that favor as testament to their sincere intent to contribute to the team. Demonstrate that this is the way you could be given the extra thirty minutes in your day for rejuvenation. Empower and enfranchise yourself, caregiver friends: there truly are gems among your networks who want to assist you, but they’ve been given bad information by multiple sources and industries, so they don’t know any better when they suggest that extra piece of broccoli. Nobody is an expert in your situation except you. Nobody is an expert in your loved one’s experience except your loved one. You two should be the instructors, and everyone else in your circles should be the instructed.
If I had thought of that earlier, it may have saved me months of anguish and isolation when dealing with friends and extended family members, because I would have broken my assumption that they did not care to “get” it, and I would have filled my toolbox with helpful resources (in the form of helping hands) much more quickly than I did. Come to think of it, I also should have divorced myself long ago from the notion that someone must fully understand my situation before helping me, but that’s a story for another time.
Steff reacted to KatieB for a blog entry, You are not always your own best advocate
Last week I took a local lung cancer patient and long time friend "J" to get his scans. This will be a very abbreviated account of what happened.
Even though we are only an hour apart, I haven't seen "J" in a couple of years. He has an incredible story of being dx in his 30s and some amazing heroic efforts when into saving his life. He's even been in the news and media. Since that time 10 or more years ago, he's struggled to live and battled a few recurrences.
They "think" he had a recurrence at the end of last year. Several bronchoscopies yielded no detectable mutations and caused several complications for him. He has lost a significant amount of weight (6'1 and 140 pounds) and he hasn't been able to stop coughing.
His dr scheduled a PET scan. Because "J" could no longer drive, he asked me if I could take him to the testing facility.
I could not believe what I saw. He was SO thin and his speech as a little slurred. He looked glassy-eyed. The nurse had a hard time accessing a vein.
Because he couldn't hold a conversation or drive himself- I borrowed a wheelchair from the testing facility. I filled out his paperwork- dug into his wallet for his ID and medicare card. He has been on oxygen and the machine that the company shipped to him was faulty. When he called them they said they could come in 2 days. TWO DAYS? I drove him to a pharmacy that sold oxygen and had it fixed.
The entire time I kept thinking...what would have happened if I could not have come today? What would have happened if I wasn't here? He would have tried to drive himself. He would have been in serious trouble. He would have been out of oxygen and maybe in an auto accident.
The PET nurse couldn't do his infusion because his blood sugar levels were frighteningly high- even though he said he hadn't eaten in about a week due to no appetite.
I just felt like things were going sideways. I asked him to call his oncologist. He spoke with the nurse. He asked her if she would order some fluid because he has been confused and weak. She said no. "Just drink extra water and mix in some gatorade." He hung up and looked defeated. He told me that the nurse said no. He didn't have pain meds. He didn't have medication to help with the cachexia, he didn't have medicine to help with his cough...he didn't have a working oxygen machine. Now this nurse was telling him he couldn't have a bag of fluids.
WHAT? ANYONE can go to the ER. "I'm taking you to the ER for fluids!"
So off we went. I took him straight to the ER and he didn't argue.
Long story a bit shorter- he ended up being admitted for some serious issues. They transferred him from one location to another one downtown. He got his fluids. The last time I saw him he was eating his lunch in his hospital room.
He isn't out of the woods- not by a long shot. But he is a better than when we started.
Why am I sharing this story? Because "J" is college educated. He has been in the lung cancer space almost a dozen years. He understands the lingo and knows how to be an advocate.
But what happens when you are dehydrated, confused, malnourished, and in extreme pain? How can you advocate for yourself?
If it's ever possible, please have someone with you- especially when you are feeling bad.
You are not always your own best advocate
Steff reacted to Tom Galli for a blog entry, Cursin' On a Sunday Afternoon....
We are "locked and loaded" for our fifth Transatlantic cruise since I was diagnosed with lung cancer. This Sunday, we depart from Ft. Lauderdale and fifteen leisurely pamper-filled days later, arrive in Southampton, England. Along the voyage, we'll visit Bermuda (a first), the Azores (an other first), Lisbon (been there), Bilbao, Spain (a first), and Le Harve, France (been there). And best of all -- no jet lag! We are serious cruisers and are thrilled to cross the pond in a brand new ship (Celebrity Edge christened in Dec 2018).
Once we arrive in Southampton, we'll pick up a rent-a-car and proceed to get lost driving on the wrong side of the road as we explore England's picturesque Cotswalds region. We really do love getting lost in countries where we can almost understand the language! Then, after a week of land touring, we fly back home to usher in our summer.
Vacations are important for everyone; they are vital for lung cancer survivors. I find I need about 7 days of state change that removes me from day-to-day life and stress. On the eight day, I float in a mental sea of serenity and on this trip, I do hope for calm seas throughout our voyage.
Stay the course...we will!
Steff reacted to Tom Galli for a blog entry, A Picture is Worth 15 Years
I'm the guy who paints a toenail for every year I live beyond my February 4, 2004 diagnosis day. This year our toes are LUNGevity Blue to honor the foundation that is dedicated to changing outcomes for people with lung cancer through research, education and support.
There are many people who've been instrumental in my survival and making a life after; none are more important than my loving wife -- Martha Galli. If I can live, so can you!
Stay the course.
Steff reacted to DanielleP for a blog entry, The Pivot
“You know, I heard that green tea/apricot pits/jogging/apple cider vinegar/kale/broccoli/mustard greens/fresh avocados/yoga/this miracle powder/oil/salve/etc., etc., etc. will cure your mom’s cancer. You really need to try it. It worked for my cousin’s friend’s stepmom’s brother. Let me get you the information!”
If you have ever had a loved one with cancer, you’ve heard these offers. You know exactly how they sound. The personal heroism of a friend or neighbor or acquaintance or coworker, offered bravely to your face, can feel so affrontive and offensive. This is especially true when medical treatment plans are not working; when your loved one is especially vulnerable for any number of emotional or physical reasons; or—
wait for it—
when the person offering the miracle cure is otherwise uninterested, uninvolved, and/or unhelpful in the actual caregiving of the patient.
There. I said it. Do not come up to me offering miracles, period. I don’t have the energy to explain to you that, while broccoli is great and we should all definitely get more exercise, they alone are not going to abate the tumors in my mom’s lungs. I don’t have the emotional wherewithal to be polite to you while staring in disbelief that you yourself have fallen victim to believing some scheme.
And if you have not asked if we need anything, or brought us a cake or pie or casserole or loaf of bread in the four years since she’s been diagnosed, then you have an especially low level of credence or gravitas with me in terms of your interest in my mom’s well-being.
If you are a caregiver, you know exactly what I mean. We are on the same page right now. We are all preachers and choirs (or pots and kettles) at once.
But…that doesn’t mean we know what to do about these offers of help. As annoyed or hurt or exhausted as we may be, the fact remains that these are relationships we may need to maintain. Telling folks exactly how we think or feel about their unhelpful “help,” using all the words we want to use, is not exactly conducive to maintaining the relationships. So, we need a coping mechanism. We need a tool.
At some point, off the cuff, in one of my more emotionally raw moments, when faced with one of these offers, I let slip from my mouth: “you know what would actually be helpful?”
And, just as if in a sitcom, I jumped; surprised at my own words; time slowed to a crawl; I turned my head; I looked at my acquaintance, as if in molasses-slow-motion, terrified that she would be offended; and…
She looked right back at me, unaware of my sitcom-terror-moment, and said “what? What do you need? Let me help!”
And my world shifted from a sitcom to a Disney princess movie. Time sped back up, birds chirped, the sun came out, the clouds parted, and music started to play.
Well, that’s how it felt, anyway. Seriously: I was floored. Her genuine interest in helping had been proven, and I realized: she just didn’t know HOW to help, or WHAT to offer, so she had reverted to the only tip/trick/hack that she knew of on the topic.
My point is: as caregivers, we are so consumed by all that we have to do that we cannot imagine anyone in our lives or networks being oblivious to our reality. But, my friends, they are. All of our friends (and relatives and acquaintances and neighbors and coworkers) are understandably consumed by their own realities. When they occasionally can fall out of their own orbits to see what we are up against, it takes a lot of time to catch up with the status of things, let alone to study up on what we might need or not need. This is time that the folks in our networks usually don’t have, my friends. So, if they are aware of some one-size-fits-all grab-and-go panacea, of course that’s what they’re going to offer. These are, after all, unfortunately readily available and highly advertised.
Here’s the point: on that day that the skies cleared and my friend stopped in her tracks to ask what I actually needed, I learned that her heart was in the right place. Her intentions were good, even if ill-informed. And, I would venture to guess, that's the case 9x/10.
And so, the “pivot” was born. This became my tool, and I offer it to you here in hopes that you can make use of it as well.
(If you're a fan of the movie or musical "Legally Blonde," or if you love "Clueless" or "Mean Girls" or anything like that, this can alternatively be referred to as the "bend and snap." Don't ask).
The “pivot” is just the name I give to my blatant usury of the assumed good intentions of the poor soul who offers me snake oil. Here is the script:
Person: “I’m sorry to hear about your mom’s lung cancer. Have you tried making a smoothie from donkey fur? I hear that cures cancer.”
Me: “OH my gosh, thank you, that’s so nice of you to tell me. Hey, ya know, I’m really covered up on Thursday. Can you bring mom some lunch?”
BOOM. Done. Weapon deployed.
(The caveat, of course, is that you have to have a ready-made mental list of assistance that would be useful to you. Frankly, I think this is always good to have, so that you can always respond productively when folks ask what they can do, no matter how they actually ask the question).
Anyway: my favorite part of using the pivot tool?
You will *very quickly* separate the wheat from the chaff. You will immediately be able to gauge whether the person offering the unhelpful help was actually interested in helping, or only being unhelpful after all.
And, at the end of the day, they might actually come through.
Steff reacted to Tom Galli for a blog entry, A Life Well Lived
A lady with lung cancer passed early this morning. I knew her well. She survived two surgeries claiming a lung, radiation, and many many infusions of chemotherapy. Indeed, her disease was being treated like diabetes or heart disease — a chronic but controlled condition.
Lung cancer did not claim her and death is not a celebratory event, but living a full and meaningful life despite lung cancer is indeed praiseworthy. In characterizing the lady’s life, full and meaningful are an enormous understatement.
In recalling our years together, I am struck by how few times we talked about lung cancer. We shared a disease but talked about stock shows, cars, fashion, movies, politics, family, travel, ranching, tomatoes, and friends. That she would not achieve NED didn’t bother her a bit. “I’ve got things to do and doing nothing ain’t gonna happen!”
I will morn her passing. I will also strive to emulate her lifestyle.
Stay the course.
Steff reacted to LaurenH for a blog entry, First Steps: Garth Atchley (Part 1 of 2)
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!
Steff reacted to LaurenH for a blog entry, Don Fredal
I was diagnosed with Stage IV lung cancer in September 2014. Like many people, my diagnosis came as a huge surprise to me and my family. A friend told us about the Breathe Deep Kansas City Walk that was happening in our area. We called our team The Village People because we like to say, “It takes a village” to fight this thing. The Breathe Deep walks provide an opportunity to raise awareness and money in your own community. It’s very powerful.
I attended my first National HOPE Summit in Washington, D.C. in 2015. Lung cancer is so isolating and overwhelming. Then you get there and meet other survivors and caregivers and experts. I feel like I always leave HOPE Summit with 150 new friends and then I don’t feel so lonely when I get home.
The next year my wife and I attended the 2016 Hope Summit together, she finally understood how these friends I had been talking about for the last year could be so intertwined with my health and healing. We made even more friends and keep in touch all year long through social media and other events around the country.
Once you get to HOPE Summit, it’s so empowering that you want to get involved. I found out about the LifeLine Support Partner program at HOPE Summit. LifeLine is nice because you can work remotely and there’s an opportunity to give back. My mentor, Matt Ellefson, is one of those people who LF relies on to have multiple mentees and he was very inspirational for me because of our similarities and what we’ve been through. It was a very good fit.
LUNGevity tries to match people based on age, gender, diagnosis and geographic location. It’s always felt very comfortable. I’ve had mentees assigned to me and we usually have a really good talk and maybe hear from them once or twice and that’s all they need at that time. We talk on an as needed basis. Hopefully, I’m encouraging people depending on where they are. A lot of the time, the person is newly diagnosed and it’s very fresh with them. As a mentor, you have to put yourself back in that frame of mind. It’s important to remember that you’re not there to fix their situation. You’re there to listen to what they need and let the conversation evolve.
The most rewarding thing about being a volunteer is being able to help someone else by sharing my experiences and the ups and downs that I’ve had. If I give any advice it’s always to find a specialist who is an expert when it comes to your diagnosis type or mutation. It’s so important to be very confident in your medical team. Don’t be afraid to get a second opinion. If your doctor isn’t jiving with you, keep looking. It just feels good to help somebody through this because as we all say, it’s really hard for other people who haven’t gone through it to understand.
When I was diagnosed, I was given 9-18 months. I’m coming up on 3 years and 11 months and my wife and I are going out to Los Angeles next month for the Stand Up for Cancer telecast on my 4th Cancerversary. I hope that my efforts as a LifeLine volunteer will inspire the people I mentor to do the same for others. I’m a big believer in paying it forward. It’s a big world and there are a lot of people affected by this disease.
Steff reacted to Susan Cornett for a blog entry, Another recurrence, another call to Mom and Dad
I've said it before and I'll say it again: cancer can be as hard, if not harder, on the loved ones than the patients. Our family is very close - I don't have any siblings and my husband and I don't have children. Our family unit is small. After 2.5 years, my husband and I have a process. He goes with me to all of my scan result appointments. As soon as Super Doc gives us the results, Neal steps out and texts or calls my parents with the updates. I always want to be with them if we have to give them bad news. My parents live 4 hours away; otherwise, I think they'd crowd into the exam room with us.
Although we had to give them bad news a couple of weeks ago, we actually had something in our favor. A lifelong friend of mine was visiting with them on the way to take her daughter to tour a college. She was able to keep my parents somewhat balanced this time. I'd been preparing them for the results - figured this was coming. But no one wants to have to call their parents and tell them the cancer is back. Stupid cancer.
Steff reacted to Tom Galli for a blog entry, Free and Invaluable
Using the words free and invaluable to characterize lung cancer medical care is a hard sell. I’ve seen so many scams promising this, that, and the other thing that deliver nothing more than a money pit. So I was indeed skeptical when Dr. David S. Schrump introduced his National Cancer Institute Intramural cancer treatment program, at our April 2018 LUNGevity Summit, with the words “no cost to patients, including travel and lodging.”
Why didn’t I know about this resource? I’ve encountered so many newly diagnosed folks who had no or inadequate insurance and who had to forgo treatment because of financial concerns. Yet, there is a sophisticated, taxpayer funded, medical system that designs “unique to patient” protocols including surgery, radiation, chemotherapy, and newly emerging treatments. And, it is free! All patients at the NIH are on investigational protocols, including those who are receiving standard care, so that their tumor tissues, blood, etc can be used to develop new cancer therapies. Once a patient is enrolled onto a protocol, care is provided at no cost. There is no third party billing, deductables, etc.
Then on the second summit day, I learned Dr. Schrump’s Surgical Oncology Team is developing unique vaccine-like immunotherapies using tumor material surgically removed from a patient — a tailored and individualized immunotherapy agent. In an ongoing vaccine study, Dr. Schrump’s team observed immune responses to lung cancer-associated proteins in 60% of patients; several responders have had unusually prolonged disease free-survivals, supporting further evaluation of the vaccine. Dr. Schrump hopes that personalized vaccines may one day be an alternative to adjuvant or post-surgical chemotherapy, the current standard of care. Much more work needs to be done to determine to feasibility and potential efficacy of this approach.
Moreover, they are using aerosol delivery methods as alternatives to IV or oral administered drugs to increase the uptake of drugs into lung cancer cells, and “prime” them for attack by the immune system. Indeed, his presentation was filled with very innovative methods of attacking lung cancer with promising results.
If you are an American and don’t have the financial resources for lung cancer treatment or if your medical team has run out of treatment ideas, contact the National Cancer Institute. You don’t need a physician referral. Email [email protected], introduce yourself and your diagnosis stage and type and put your phone number in the email. Free and invaluable may indeed be words appropriate to use in concert with lung cancer treatment.
Steff reacted to Tom Galli for a blog entry, The Cadence of Scan Days
"Count-off...One, Two...Count-off...Three, Four...Bring it on down now...One, Two, Three, Four, One-Two...Three-Four!"
My life is filled with counting. As a young soldier on the march, we counted cadence to stay in step. The rhythm of the cadence was an elixir to the mile-upon-mile-upon-mile of forced march in full combat load. They always scheduled the forced march on the hottest day, or the wettest day, or the coldest day of the year. One memorable march was the day after a hurricane! Weather or not, we marched and counted.
After diagnosis with lung cancer, my life embraced a different sort of cadence. There was the countdown to scan day, then time stopped waiting for results. One...what time is it...just ten in the morning...the clock battery is out...is it back...how bad...how many nodules...how big...ten-oh-two...mets in the bones...liver also...scan tech didn't smile...he saw something...ohGod.... Life just stopped waiting for results. Time stopped!
Waiting for scan results is absolute misery coupled with measured doses of agony and anguish, torment, despondency and gloom thrown in for good measure! Each day was a twenty-five-mile forced march that started but never ended. Cancer sucks but waiting for scan results sucks squared!
Stay the course.
Steff reacted to LaurenH for a blog entry, Ashley Rickles
“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.
Steff reacted to DanielleP for a blog entry, Hope? Sure, let's talk about hope! Hope is...well, what is it, exactly?
Sometimes, HOPE is a kitten.
Okay, okay, sure, I know, that sounds a little weird. And a little bit like a desperate attempt to pass a poetry exam.
Let me explain…
Hope is strong and confident. Hope can be fickle. Hope can be hard to corral, name, and predict.
Hope can be ephemeral, and hope is also everlasting.
Hope can be full of contradictions. Hope can take many forms, directions, shapes, and sizes.
You’ve heard the expression “herding cats?”
Hope is one thing that cannot be herded. It is inspired, it cannot be forced, and it is felt differently by different people.
And hope, like most emotions we encounter after lung cancer has entered our lives, can have a complicated duality. An ambivalence. A way of being prickly when it doesn’t fit in our hearts, and a way of busting our hearts wide open.
A way of showing up without telling us why it’s there, and staying with us, warm and fuzzy and comfortable and soft, exactly when we need it most.
And that duality and ambivalence is essential to its nature. It isn’t going away.
…Okay. You get it. Hope is like a kitten. I’ve gotten just about everything I can from that analogy!
But, that’s not entirely what I mean. Let me explain (some more). Let me show my hand.
By way of update:
My mom is one of the people for whom I am a “caregiver.” She has been living with Stage IV NSCLC for a little over three years now. She was on a clinical trial of an immunotherapy medication for just over two years. She’s coming up on a year of having not been on any active treatment. She left the trial by choice, after experiencing some vague side effects that were determined to be likely due to the treatment (more on that another time).
She is exhausted every moment of every day, to some extent. This woman who was always the most productive, vital, “type-A,” energetic soul I had ever met is now essentially housebound. Her profound lack of vim and vigor is the antithesis of her identity, and it has left her feeling robbed. Some days she feels like going out to lunch or running one errand; but there are usually weeks between these good days.
(Side note: we have long made her medical team aware of her severe fatigue, and it was determined to likely be a result of her treatment. Because every patient and every situation is different, please always make your loved one’s medical team aware of every side effect that is experienced, especially when these interfere with your person’s quality of life!)
So, with these long hard days of being stuck at home, not feeling like herself, one might imagine that she would feel glum, and downtrodden, and defeated.
The answer is: of course she does! She’s human!
(Trick question, with a trick answer…)
See, the thing is, that isn’t ALL she feels. Nope.
Lately, despite choosing to not be on treatment, and despite being overwhelmed in the way that only a very tired person who has gone through a lot can feel (I know you all understand), she has also felt…hopeful.
Which reminds me:
She woke up a couple days ago
You heard me.
KITTENS. She wanted kittens in the house. Kittens. Baby cats. Catlings. Cat blossoms. Cat kids. Cat puppies.
We currently have two grown cats. We worship the ground they walk on. We have had both cats and dogs in the past. Pet adoption is an important cause to us, and we tend to make a new addition to the family every 5-8 years.
Following our normal timeline, we have talked about adopting kittens a few times since mom’s diagnosis in 2015. But, 10x/10, she has decided against the idea, once even as I was literally walking out the door to head to the shelter. She has been on a scale somewhere between hesitant and heartbroken each time, and each time because she did not feel she could handle the joy that a new pet brings.
Let me repeat that: she felt she could not handle, or did not want to welcome, the particular joy that a new pet brings.
The joy of a new pet is like Spring: It’s promise. It’s a belief in a tomorrow.
Disclaimer, because I feel I have to make one: the decision to adopt a pet is a serious one, and should not be made lightly. We are very experienced cat owners, and we have gone through the cat-to-kitten introduction process many times over the years. In a caregiving situation, pet care should be particularly deliberately and honestly discussed, since caregivers may or may not have the ability or desire to assume those responsibilities.
But, in our case, that situation could not be more perfect. I mostly live with my folks as part of my effort to help out, so I am around (and, let’s face it, more than willing) to contribute my part to Project KittenHope. At the end of the day, the kittens will become part of the whole family, owned and loved by all of us.
When my mom declared that the haze had lifted and that she was ready to take this step, it was an automatic victory. It was a sign.
It was hope.
Thus: this week, into our lives walked a two-month old little girl cat and a two-month old little boy cat.
And, yet, those of you who are here reading this understand, not needing any disclaimer. Because -----------------------------------------------------------------------------------------------*-
…one of the kittens just typed that.
As I was saying: because you understand this daily tug of war, seeking and understanding hope.
So, the past few days, while welcoming our new additions, I have literally been herding cats…and herding hope. It appears where it will, often when least expected, and gives its gift of easy breathing and lifted hearts.
Just like the kittens.
This past weekend, LUNGevity hosted their National HOPE Summit in Washington, D.C.: an annual gathering of lung cancer survivors and co-survivors (caregivers!) that is regularly the largest such meeting in the country. It is part family reunion, part medical conference, and part survivorship bootcamp: fellowship with folks who understand what the lung cancer experience feels like; experts who inform the crowd on the most cutting edge treatment and diagnostic research; and tips and tricks for living one’s best life as a lung cancer survivor or caregiver. The event leaves everyone enlightened, invigorated, and aware of information and tactics that can introduce HOPE where there may have been none.
Thanks to the LUNGevity Foundation, May is officially National Lung Cancer Hope Month. We HOPE (see what I did there?) that you will join us every day this month in ongoing conversations about all the HOPE that is out there in the lung cancer field: new diagnostic tests, new medications, new genetic sequencing, new surgeries, new forms of radiotherapy, new places to turn for assistance, new clinical trials, new emphases on patient navigation, and more. (See LUNGevity.org for more of this. Seriously, it seems there is breaking news every day!)
We also HOPE that you will share with us those moments, long and brief and in-between, that give YOU hope, inspiration, and a reminder of why we wake up every day to advocate for patients: for new treatments, for access to help, for better resources, for more information, and—as LUNGevity says--for a world where nobody dies of lung cancer.
Steff reacted to LaurenH for a blog entry, Amy Richard's Story
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.
Steff reacted to Tom Galli for a blog entry, And Major Means What?
“Drug-related deaths have grown to be a major US public health problem over the last two decades. Between 2006 and 2015 there were more than 515,000 deaths from drug overdoses.…” This from a March 26 article in Science Magazine. The death rate averages 5,722 per year over the cited period. Further, “the drug epidemic is a pressing concern among policymakers.” This concern translates to a $865 million research budget for the National Institute on Drug Abuse. This budget funds $151,117 per individual drug-related death.
This year, 163,199 Americans are projected to die from lung cancer. The National Institute of Health Lung Cancer research budget for 2018 is $282 million. This level of research amounts to only $1,727 per individual death.
Lung cancer kills 28 times more people per year than drug addition, but the drug addiction research budget is 87 times larger then lung cancer’s on a per-death basis. Clearly, our public health policy makers fail to understand the meaning of the word major. The major and largely unaddressed US public health problem is death from lung cancer.
Stay the course.
Steff reacted to LaurenH for a blog entry, Carole Baker's Story
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.
Steff reacted to LaurenH for a blog entry, Bill & Heather’s Story (Part 2)
Becoming Empowered Advocates
My wife, Heather, told me about LUNGevity National HOPE Summit and that she wanted to attend. She received a Travel Grant from LUNGevity and I decided to join her at the conference. It is one of the best things we ever did. The wealth of information about lung cancer available through LUNGevity is not comparable to anything I could find in Canada or through any Canadian organizations. LUNGevity is so caring, thoughtful, and cutting edge.
Heather and I attended our first National HOPE Summit in 2016. It was so incredibly inspiring. We got to see first-hand that the statistics are just numbers, not individual expiry dates. The number of people in attendence was impressive and the conference was well organized. We met people from across North America who embodied hope and positivity. It felt like a family. The medical professionals at this event were amazing. They spoke with my wife and gave her their contact information if they could ever assist her in any way in the future. After that experience, I felt empowered to become an advocate and to get involved with awareness events with my wife in our home province of New Brunswick.
I followed LUNGevity on Twitter and I joined the LUNGevity Caregivers group on Facebook. I started participating in a few of LUNGevity’s LC Caregiver Twitter chats, which are held the first Wednesday of every month. I utilized the #stopthestigma hashtag on Twitter whenever possible. I volunteered to be a LifeLine Support Mentor to provide peer-to-peer support to other caregivers, and I joined LUNGevity’s Social Media Ambassadors to help raise awareness online.
My goal is to raise awareness of lung cancer as the number one cancer killer, taking more lives annually than breast, colorectal, and prostate cancers combined, while receiving the least amount of federal funding for research. I hope that my advocacy efforts will help other caregivers through sharing my experience, strength, and hope.
Whenever I can, I join my wife in her advocacy work. It is important to us to stay educated on new treatments, research, and changes within the lung cancer community. We continuously meet with Federal and Provincial politicians to educate them about lung cancer, to lobby for equal access to health care, to promote genetic testing, and to demand equal catastrophic drug coverage in Canada.
Heather lends her name and story to different publications to spread the word about lung cancer. Through social media, she has connected with doctors and research scientists across Canada to support their requests for research funding. The most recent was through a connection with a very passionate doctor at the Dalhousie University Research Foundation.
I hope to help educate the greater public that if you have lungs, you can get lung cancer. It’s not “just” a smoker’s disease and smoking is listed as a possible cause for all cancers. Lung cancer patients do not deserve this disease. I plan to continue to volunteer at events in my area to help raise funds for research and to promote the work and resources available through LUNGevity. And Heather and I look forward to attending National HOPE Summit together this spring.
Steff reacted to Susan Cornett for a blog entry, Cancerversary
Today, I happily paint two of my toes red, to celebrate two years of being a survivor. Some days I ask myself it has really only been 2 years because it feels like I got the diagnosis so long ago. Lots of scans and needles and chemo and radiation and....I'm still here!
I woke up this morning, very cheerful, almost like I was celebrating a birthday. I realize that EVERY SINGLE DAY is a gift, whether we have lung cancer or not, but that cancer seems to make each day that much more important. While I was thinking about everything today, I was overcome with emotion. I know that I am blessed to have as much time as I've had. I think about the friends I've made in this "club" that are no longer here. For those friends, and for the rest of us, we continue to choose life.
Steff reacted to LaurenH for a blog entry, Kyle McCarthy
My Dad was always my Ironman when I was growing up. In 2004, my dad had a persistent cough. He went to the doctor a few times and was finally diagnosed with pneumonia. A year went by and the cough went away for awhile. When it returned, my dad went back to the doctor. He was diagnosed with Stage IV lung cancer. I was 17 at the time.
After he was diagnosed, my Dad signed up for Heather Saler’s Lung Cancer Walk in Pennsauken, NJ, which eventually became Breathe Deep South Jersey. My dad didn’t do the full walk, but he was part of the survivor ceremony. I went with him and that was how we found out about LUNGevity and decided to start fundraising.
My dad passed away in 2006, less than a year after he was diagnosed, but he taught me so much during that time. I saw how strong he was during his battle. He never gave up and gave it everything he had.
My dad was a photographer. When he passed away in February 2006, my girlfriend (who is now my wife) and I put together a show with all of his photos at a local restaurant. People could come just to see the photos or they could buy them to help raise funds for LUNGevity. The second year, people who were impacted by cancer, either themselves or a loved one, donated artwork for the show.
My dad was also a runner. He ran several marathons. I ran my first marathon, the New York City Marathon, in 2016. I wanted to strive for something more challenging so I decided to do the Ironman Lake Placid for Team LUNGevity. Lake Placid is the longest running Ironman event in North America and this is 20th Anniversary year, so it will be a great event. It consists of a 2.4 mile swim, a 112 mile bike ride, and a 26.2 mile run.
Doing an Ironman is going to be the toughest thing I ever attempt. I wake up at 4:30 or 5:00 a.m. and either swim, bike, or run for about an hour, then go to work, come home, and train again in the evening. I’ll be training for about seven months total. I’ll be posting my Ironman journey throughout my training all year long on Facebook. I’ll also post stories of my Dad and news from LUNGevity. And hopefully when I finish that Ironman, I will be wearing something LUNGevity.
If anything is going to inspire me to complete this Ironman, it is my Dad. The least I can do is try to raise money for lung cancer research in his name. Every dollar counts and every life matters. I hope that my fundraising efforts will make a difference in the fight against lung cancer. Maybe it is the dollar that helps find the cure, maybe it helps give someone affected by this disease sometime of motivation or maybe it just makes people more aware of lung cancer.
Steff reacted to Tom Galli for a blog entry, Fourteen Years, Three Right Feet!
This is my fourteenth anniversary surviving a lung cancer diagnosis. Granddaughter Charlett's decorated toes join mine to keep our right feet forward! I paint my toes every year as a celebration of the joy life brings. In early treatment, there was no joy. There was fear, frustration, pain, uncertainty and scanziety. I'd not yet discovered Dr. Phillip Bearman who taught me the reason for lung cancer treatment -- achieving extended life. Phil decided he would live every moment to the fullest despite the rigors of treatment, and he'd celebrate every year of survival with a painted red toenail. He couldn't control his lung cancer, but he could control the way he felt about his lung cancer. I started living when I internalized his message. My first paint job was at my third anniversary and I'll never miss another.
I am a lung cancer survivor. My message for those in treatment is twofold: enjoy the life extension treatment provides and if I can live, so can you.
Stay the course.