MarieE 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.
MarieE reacted to Tom Galli for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor
MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
Step 1 – Invest in sophisticated diagnosics before diagnosis
If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
Step 2 – Choose a good general practitioner
Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
Step 3 – Ensure your oncologist is a physician
A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
Step 4 – Learn about your disease
At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
Step 5 – Acquire a sanguine attitude quickly
Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
Step 6 – Any port in a storm
There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
Step 7 – Don’t believe the miracle cure
The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
Step 8 – Don’t try to tough it out
I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
Step 9 – Become a calendar maniac
If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
Step 10 – Choose to live
When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
Stay the course.
MarieE reacted to LCSC Blog for a blog entry, Taking the Results in Stride
Apparently, I'm back in the lung cancer business. According to the video visit I had June 8 with my endocrinologist, my thyroid cancer has not moved into my lungs where my oncologist thought it might have - given the results of a previous biopsy and some surprising tumor inactivity in my lungs. The 'surprising inactivity:' the tumors didn't kill me. Living, as they say, is the best reward. And it sure beats the alternative.
Nevertheless, I can't say I'm thrilled with the outcome. All the tumors in my lungs still being non-small cell lung cancer squashes my dream that those tumors were curable papillary thyroid cancer (as it had been suggested by my oncologist in a previous phone call) that had moved rather than the originally diagnosed incurable lung cancer which itself had metastasized. In fact, papillary thyroid cancer is called "the friendly cancer, " according to one of my oncology nurses at the infusion center. There's nothing friendly about non small cell lung cancer, stage IV.
I was hoping that the diagnosis of thyroid cancer was going to change my life from being cancer-centric to being thyroid-cancer-are-you-kidding? You mean to tell me, after 11 years and four months living as, and being treated for, lung cancer, the actual diagnosis is thyroid cancer? But alas, poor Yorick, 'twas not to be. If what I've been told recently is the absolute-without-a-doubt truth/accurate diagnosis, then I am back on the emotional precipice waiting for the other shoe to drop or, at the very least, have one of my socks fall down around my ankles and get all balled up in my sneakers. (Which I hate, by the way, when socks get all rearranged like that. I like the heel of the sock to be lined up properly with my heel and the toe of my sock not twisted away from the toes and so forth.)
Once again, I suppose I'll have to pull myself up by my own boot straps, which I don't even own, and step lively, putting one foot ahead of the other and trying not to back up one step for every two I take. I've progressed too far for too long to backslide now. And even though my working thyroid-cancer-instead-of-lung-cancer narrative is now a thing of my medical past, it was sort of fun and uplifting - while it lasted. Now, I have to reconnect with my previous lung cancer reality and try to find some new approaches to living with a "terminal" disease.
It reminds me of what Cpl. Klinger (Jamie Farr), the cross-dresser from the television series M*A*S*H, once did when he returned to camp after assisting the doctors off-site at an aid station. He was all business away from the 4077th, but upon his return, a few hundred yards outside "the upholstered toilet seat" as Trapper John (Wayne McIntyre) once called it, Klinger put his female nurses cap back on and reverted to his previous form as a skirt-wearing Section 8 wannabe, and life for him and all the other M*A*S*H personnel returned to their abnormal.
So too must I return to mine: as a stage IV, non-small cell lung cancer patient who hasn't died and somehow has managed to keep under the reaper's radar. I mean, how else does one live so far beyond one's original "13 month to two year" prognosis? Granted, I have a good attitude and have made some changes to my diet and lifestyle, but hardly would I characterize my behavior as any kind of poster-boy status. Sure, I've tried to make light of an extraordinarily heavy burden and made lots of jokes in the face of what I was led to believe was certain premature death (what death isn't premature?), but that's more about personality than procedure. I was up for the challenge is all. Not everybody is. As Kenny Beatrice, a long time sports talk-show host in the Washington DC area used to say: "You can't teach height." Lucky for me, as my late father often said, I was "born with broad shoulders."
MarieE reacted to LUNGevityKristin for a blog entry, A Simpler Way to Sample: Liquid Biopsies in Lung Cancer
Liquid biopsies are easier on patients, yield faster results and cost less than tissue biopsies, but these blood draws don’t yet replace traditional tests.
BY MEERI KIM, PH.D.
PUBLISHED APRIL 20, 2020
During winter 2013, Larry Gershon had a bad cold that he couldn’t shake. The then 65-year-old print broker took cold medicine and steroids to fight off the symptoms, but the illness persisted. When the wheezing and coughing got worse, he went to urgent care.
“The doctor thought it was best to take a chest X-ray to check for pneumonia. I didn’t have pneumonia, but it showed a spot in my right lung,” says Gershon, a resident of Palo Alto, California. After CT and PET scans revealed a mass in his upper right mediastinum, the chest area between the lungs, doctors surgically removed part of his lymph node for a tissue biopsy.
In late January, he learned he had adenocarcinoma of the lung, the most common type of non-small cell lung cancer (NSCLC). Initially, doctors thought it might be stage 3b because it had spread to his lymph nodes, but a subsequent MRI uncovered metastasis to the brain.
“I was told I had stage 4 lung cancer, and I was shocked — a deer in headlights,” says Gershon, now 72. “Because I was self-employed, one of my biggest concerns, when I was diagnosed, was if I would be able to continue to work.”
Gershon was first treated with chemotherapy in February 2013. A genomic test from his surgical biopsy revealed a mutation in the EGFR gene. In 2015, he moved on to Tarceva (erlotinib), an oral targeted therapy approved by the Food and Drug Administration (FDA) to treat patients whose cancer has spread to other parts of the body and have an EGFR mutation. After 20 months, Gershon’s disease progressed, so he switched to Tagrisso (osimertinib), another oral EGFR inhibitor, which he remains on.
About a year ago, he enrolled in a clinical trial to test a new diagnostic technology, known as liquid biopsy, in patients with previously diagnosed cancer. Instead of analyzing a piece of tissue, as a traditional biopsy does, a liquid biopsy looks for traces of cancer in the bloodstream, also known as circulating tumor DNA (ctDNA).
For the past two-and-a-half years, Gershon’s imaging scans have shown no signs of cancer. Every three months, he has blood drawn in hopes that a liquid biopsy will detect any recurrence as soon as it arises.
“When I progressed in 2016, I had bone metastases, and so they’re currently giving me bone density injections along with a blood draw to check my counts,” he says. “The liquid biopsy is a couple more vials of blood than I already do, so it’s a very simple test.”
THE RISE OF LIQUID BIOPSY
In 2016, the FDA approved the first liquid biopsy to detect EGFR mutations, which are present in 10% to 20% of all NSCLCs and more commonly found in women, Asians and individuals who never smoked tobacco. Today, liquid biopsy has become the standard of care in clinics, either alone or alongside a tissue biopsy.
Although tissue biopsy remains the gold standard, doctors praise liquid biopsy for its many advantages, such as ease of administration, faster turnaround time and lower cost. In addition, even patients with hard-to-reach or small tumors can have blood drawn.
“In lung cancer, we are often dealing with very small tissue biopsies, and sometimes not even a biopsy but an aspirate, which is just a collection of cells, because it is too difficult to get a real tissue biopsy,” says Dr. Fred Hirsch, executive director of the Center for Thoracic Oncology
in The Tisch Cancer Institute at Mount Sinai. “With such limited tissue available, it is reasonable to do a liquid biopsy to test for molecular abnormalities like EGFR for the possibility of targeted therapy.”
Liquid biopsy research has focused on NSCLC, which represents 84% of all cases, because of its many molecular biomarkers that have been identified. This disease can exhibit changes not just in EGFR but also in the ALK, BRAF, NTRK and ROS1 genes. A patient with an identified biomarker may be able to be treated with a medication that targets the mutation, potentially working better than chemotherapy and causing fewer side effects.
The noninvasive nature of a liquid biopsy translates to a much lower risk of injury compared with a tissue biopsy. For the latter, samples of the lung tissue are removed with a needle or during surgery, and possible complications include air leak (pneumothorax), bleeding and infection.
A liquid biopsy requires a blood sample drawn from a vein in the arm with a standard needle. Typically, 20 milliliters of blood are taken, but some tests need as little as five milliliters, or about a teaspoon. A centrifuge spins the blood, separating it into its component parts. The plasma, which makes up the largest portion and excludes the blood cells and platelets, is then analyzed for ctDNA with a genetic test.
Study findings have shown that the amount of ctDNA correlates to the amount of cancer in the body, tumor response and survival outcome. It also provides molecular information about the specific mutations of the original tumor.
“For every patient who has advanced adenocarcinoma of the lung, you have to test for EGFR mutations, ALK mutations, BRAF mutations, ROS1 mutations— and that’s just the bare minimum,” says Dr. Nathan Pennell, a medical oncologist and director of the lung cancer medical oncology program at Cleveland Clinic’s Taussig Cancer Institute. “By the end of 2020, there will be approved drugs for RET and MET mutations, most likely, and there are lots of drugs in trials for KRAS and HER2 mutations.”
Genetic tests that analyze blood instead of tissue samples can detect the same kinds of mutations but with a much faster turnaround time. In a 2019 study, Dr. Bob T. Li, a medical oncologist at Memorial Sloan Kettering Cancer Center, and colleagues compared liquid biopsy with tissue biopsy in 210 patients with advanced lung cancer and found median turnarounds of nine days versus 20, respectively.
“It takes much longer to get tissue biopsy results, and sometimes patients can’t wait that long,” Li says. “Time matters, because there’s a risk of rapid deterioration, and you don’t want to miss the boat. Treating the patient expeditiously can mean the difference between life or death.”
A QUESTION OF SENSITIVITY
Meanwhile, tissue biopsy remains the most accurate test. Medical test performance often is based on sensitivity, or the proportion of correctly identified true positives, and specificity, or the proportion of correctly identified true negatives. A blood-based biopsy’s specificity for ctDNA is very high, ranging from 95% to 100%, which means a positive result for a given mutation can be trusted and acted on immediately.
The sensitivity, on the other hand, varies from 60% to 85%. Therefore, a negative result cannot be fully trusted, and doctors will order a tissue biopsy to double-check.
“It’s very unlikely that you’re going to have a false- positive result with liquid biopsy, but you can have a false negative result,” Pennell says. “For EGFR mutations, the sensitivity is only about 80% compared with tissue. That means if 100 people have EGFR mutations, you’ll miss about 20 of them if you just do the blood-based test.”
In 2018, the International Association for the Study of Lung Cancer released a statement paper with recommendations on liquid biopsies for NSCLC. The association stated that liquid biopsy can be considered at the time of initial diagnosis in all patients who need tumor mutations identified but is particularly recommended when tumor tissue is scarce or unavailable or won’t be obtained for more than two weeks.
BANKING ON BLOOD
Ongoing research on liquid biopsies continues to improve on the test’s accuracy for diagnostics, but clinical trials like the one Gershon participated in aim to uncover new applications. Many experts foresee liquid biopsy as a tool for monitoring treatment or detecting cancer early, even before it shows up on imaging scans.
“In the near future, we would be able to use a blood test to see a molecular response based on the treatment. This would tell us whether the treatment is working or not before the CT scan,” Li says. “If the treatment is not working, we may be able to learn why and overcome it with another drug.”
These applications remain in the research phase and aren’t ready for prime time, but Li believes the field will get there within the next decade. “In the long term, perhaps we can have advanced technology that goes beyond ctDNA and looks at other genetic material to increase the sensitivity of detection,” Li says. “One day, we may be able to do a blood test, find cancer in its earliest form and eliminate it.”
For now, investigators in several studies are attempting to tackle a less ambitious goal: treatment monitoring. Because doctors can take many blood samples throughout the course of a patient’s treatment, they can use liquid biopsy to track tumor response and drug resistance. For instance, the T790M mutation in EGFR is found in about half of patients who develop resistance to EGFR-targeted drugs. Liquid biopsies conducted at certain intervals may reveal these mutations earlier.
“Even if a patient has a certain mutation at the start of treatment, this mutation can disappear and come back. Or it can disappear, and other mutations can come,” Hirsch says. “That is why repeated molecular characterization is important. But it is very difficult to get a new tissue biopsy, so there is a role here for liquid biopsy.”
Clinical trials like the one Gershon participated in are determining if liquid biopsy can detect minimum residual disease (MRD), a small number of cancer cells left in the body after treatment that may be too scarce to cause physical signs or symptoms.
Natera, the company that made Gershon’s liquid biopsy test for MRD, uses the unique mutational signature of a patient’s tumor from a tissue biopsy to determine the kinds of ctDNA most likely to show up in the bloodstream during progression.
The company hopes this personalized approach can find MRD far earlier than an imaging scan. For example, Natera used Gershon’s brain tumor biopsy from 2016 for the clinical trial to create a custom-built ctDNA monitoring assay to test his liquid biopsies.
“They take a blood draw and match it against the assay they did from my tumor biopsy based on what they think will indicate progression,” Gershon says. “If they see any circulating tumor DNA in my blood, it’ll be likely that I’ll progress at some point. I’ve had four of these blood draws so far, and thankfully, they have shown no circulating tumor DNA.”