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Tom Galli

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  1. Tom Galli
    In the days before computers, college registration involved waiting in long lines.  Freshmen were last to register and my hope was an elective in social science, fine arts or music.  But when I reached the registration table, I was assigned the only open class, Theology 101—The History of Religion.  I was less than excited.  And, worse yet, it was a Monday-Wednesday-Friday 8:00 a.m. class.
    The professor was a Marianist brother, with PhDs in Ancient Languages and Cultural Anthropology, and five minutes into my first class, I realized he was a captivating lecturer. Possessing a gift for making the mundane interesting, he introduced each lecture with a compelling story. I was so fascinated by the depth and breath of the professor’s knowledge, I studied with him every semester earning me an unplanned a minor in Theology. I am not a theologian nor am I intensely religious. But Theology taught me a great deal about faith, hope and life.  Lung cancer interrupted my collegiate learning.
    Faith is more than a religious virtue; it is a distinctive human trait. Hope comes from faith. Thomas Aquinas, the noted 13th century Christian philosopher, explained the relationship with these words: “faith has to do with things that are not seen and hope with things that are not at hand.”  Faith and hope are essential virtues for lung cancer survivors.  We don’t see evidence of treatment at work, yet faith causes our belief they are, and we are ever hopeful of achieving extended life. Hope then is our bastion against things we cannot control like life threatening lung cancer.  
    Life has a beginning and an end. Both are uncertain and often beyond influence.  In between comes living, and we have some control over the nature and quality of life.  While in active treatment, I forgot my ability for self-determination resulting in 3 years of wasted life.  Almost everyday, someone comes to this forum expressing fear, uncertainty, and despondency. I well understand why, but I also know that a lung cancer is not the end of life; it is part of life.  In that vein, I recall a quotation by Saint Rose of Viterbo framed in my professor’s classroom. “Live so as not to fear death. For those who live well in the world, death is not frightening…”  Have faith, hope and live well.
    Stay the course.
  2. Tom Galli

    Fearing Lung Cancer

    By Tom Galli,

    The lights dim, the announcer’s introduction complete, now all the stand-up comedian needs to do is be funny. We’ve all seen one bomb.  Even the best have a bad night.  Overcoming fear must be a prerequisite for a comedian. Comedian and author Jerry Gillies developed an excellent approach for handling fear: “Confront your fears, list them, get to know them, and only then will you be able to put them aside and move ahead.”
    This is very relevant advice for a lung cancer survivor.  I practiced a broader form of writing down fears by producing a journal of treatment experiences.  I still re-read that journal to keep connected to my treatment.  While I read the entire entry, I concentrate on what I was afraid of. So in a broader sense, I practiced Jerry Gillies' sage advice and benefited from it.
    The power of writing down fearful things is important because my fear quickly morphed into a monster by spawning a multitude activities that I may or may not have been frightened by. For example, chemotherapy infusions were frightful events — at least that is the way my journals in early treatment read.  But was the entire infusion process frightening?
    What I was afraid of was installing the IV, not the stick, but the wiggle to find the right place to situate the device.  An irrational fear because wiggling generates a mild discomfort but in my mind, wiggling is enduring torture. I have this mental picture of being strapped to a chair for interrogation while nurse-after-nurse “sticks and wiggles” on every extremity.  Just last week during a blood draw, the head phlebotomist had to pin me to the chair because I was “going down” during the procedure. A quick application of smelling salts saved the day!
    Following Gillies’ advice, I would write down “wiggle” on my list of fears.  Getting to know my fear of wiggling produced some ways to put it aside and move ahead.  My first way was Xanax.  One mg of Xanax about 30 minutes before a procedure and IV installs are a piece of cake.  Another way is to tell the nurse ahead of the procedure that I have a phobia and not to wiggle; pull it out and try another vein.  
    Another journal reveal is fear of pain caused by lung cancer progression.  Reading disclosed metastasizing tumors invading my spinal chord causing excruciating pain.  My oncologist dismissed this by explaining palliative radiation and hospice care. Thus, I was able to put this fear aside and continue on.
    A lung cancer diagnosis is the most frightening event in my life, treatment is a close second, and recurrence follows.  Lung cancer trumps everything else I deal with. But, I learned to face this fear.  Writing about fear helps me understand it and deal with it.  Jerry Gillies’ approach works.
    Stay the course.
  3. Tom Galli
    I’m reading of a Yale University study that advocates we choose primary care physicians by testing their political views. It is political open season and medical reporters want to join in the feeding frenzy.  The danger is some will believe a political test (views on motorcycle helmets, pot smoking and firearms to name a few) is necessary physician competency criteria, especially since the test is aimed at our closest and most important connection to the medical system—the general practitioner.
    Although medical specialists (surgery and oncology) treat our lung cancer, we often develop illness unrelated to cancer, or just as likely, a side-effect runs wild.  So a general practitioner (GP) is a very important part of our treatment team.  Presuming you just realized you need one, what are factors a lung cancer survivor should consider in selecting a GP?  Here is my list.
    A Good Listener.  Does your GP listen?  This trait is essential for we have a serious ailment with complex symptoms. During chemotherapy, I didn’t have one symptomatic complaint, I had many and they overlapped and changed day-to-day. A listening GP will hear you out, then asks clarifying questions about symptoms before launching into an exam or grabbing the prescription tablet. Off The Clock.  Does your session seem rushed? Some I know complain their doctor is “on the clock” like a game show contestant during consultation.  That’s not good.  Part of the consultation should be reviewing the reports of specialists involved in your cancer treatment.  And, questions should arise after reports and test results are digested.  A proper review with understanding takes time, not a beat the clock contest. Renew Specialist Prescribed Medications.  Murphy’s Law of medicine is your nausea medication runs out just when your oncologist is booked solid.  Do you have a GP that will come to the prescription rescue?  Some doctors don’t want to intrude on practice privileges of other doctors.  That may be a fine philosophy but when you are suffering and a simple renewal script solves the problem, your GP ought to write the script.  This is a good question to ask when interviewing a prospective GP. Cancer Aware.  In lung cancer treatment, there are medical treatment effects—say radiation burns; medical side effects—nausea, pain, numbness; and related medical problems—depression, chest infections and even common colds.  Your GP should understand the complexity that a simple chest cold might mean to a lung cancer survivor.  Questions and observations to ferret out depression is an important diagnostic role and treatment or referral are essential.  Known and Respected.  My GP was the quarterback of my treatment team.  He selected the players (specialists), monitored their treatment, and intervened to steer the team to a solution that saved my life.  Your GP needs to know practitioners and be able to influence their actions when medical timidity breaks out.  That speaks to a seasoned professional well known in the local medical community. Politics and medicine should be like oil and water—never to mix.  Medical doctors have a higher calling and abide by the Hippocratic Oath.  They swear to share medical knowledge, act always to benefit the sick, and to treat those ill warmly with sympathy and understanding.  In stark contrast, I can name quite a few politicians who forgot taking an oath of office the instant after administration.
  4. Tom Galli
    I will donate all Scanziety Amazon Kindle Store sale royalties for the Month of November to LUNGevity.org to support much needed research. I wrote for the book for three reasons. First among them is “to raise a call to arms for funding lung cancer research.” Help me raise the call to arms! Read a book about surviving lung cancer and donate to sponsor research to find, fix and finish lung cancer.
    Stay the course.
    Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU 
     
  5. Tom Galli
    “Squamous cell cancer offers distinct therapeutic challenges by virtue of presentation in older patients, its physical location in the chest, pattern of metastasis and association with comorbidities that can compromise treatment delivery and exacerbate toxicity.” This quote is from the article Targeted Therapy for Advanced Squamous Cell Lung Cancer.
    When diagnosed, almost 13 years ago, I didn’t realize lung cancer had types. Pathologists visually classify lung cancer cells seen under a microscope as small cell and non-small cell. From this simple delineation, further classification gets complicated introducing sub-type terms of adenocarcinoma, squamous cell and large cell. Large cell as a type of non-small cell? I recall dwelling on the large cell moniker and finally concluding a non-small cell can be a large cell.
    I remember the emergency room physician telling me I was lucky; my form of lung cancer was treatable compared to the other type. He didn’t say small cell, but I think that is what he meant. Indeed about 15-percent of us suffer from this nasty presentation that metastasizes rapidly.
    Adenocarcinoma sub-subtypes have morphed into an alphanumeric soup as research at the genetic level identifies biomarker profiles, mutations in an individual’s lung cancer that can serve as attack portals into the cancer cell by targeted therapy. Now adenocarcinoma survivors use terms like ALK, KRAS, EGFR and PIK3CA to further classify their disease and new targeted treatment drugs emerge to attack, like mutant Ninja Turtles! Some of these are so effective, they’ve moved to first-line therapy.
    Adenocarcinoma describes a type of cancer that occurs in the mucus-secreting glands throughout the body. Lungs naturally have an abundance of these glands but so do the prostrate, pancreas, and intestines. Squamous cells derive their name from the Latin squama meaning scale like those present on a fish. We have a lot of squamous cells including skin, the lining of hollow organs, and passages of digestive and respiratory tracts. The right main stem bronchus contained my squamous cell tumor. The location is what tipped-off the emergency room physician; he didn’t realize how lucky I was given the nature of my treatment and extent of survival.
    Speaking of treatment, the cited article reports: “therapeutic progress in squamous cell lung cancer has been relatively slow, with relative stagnation of survival numbers….Treatment for SqCC [squamous cell cancer] of the lung remains an unmet need, and novel strategies are needed including specific targeted therapies….” That’s not good.
    First-line therapy for many continues to be the dual recipe of some variation of taxol and carboplatin, the same drugs I was administered from 2004 through 2007. And, survival rates have not significantly changed despite chemistry changes in platinum and taxol based agents. Thankfully, these have lowered the incidence of peripheral neuropathy and this is helpful.
    Second and subsequent line therapies for squamous cell have benefited somewhat from research. Immunotherapy research has yielded some success in developing drugs that enhance our immune system’s ability to recognize and attack cancer cells. The alphanumeric monikers PD-1 and PD-L1 are starting to resonate with squamous cell survivors. I do like the names of these approaches ⎯ PD meaning programmed death! The idea of programming cancer cells to die is satisfying although that is not the means of attack. Nevertheless, the scientist that named this approach deserves recognition because a scheduled execution of squamous cancer cells would be well deserved payback. All squamous lung cancer cells are programmed to die tomorrow at high noon!
    But, progress in the genetic arena for squamous cell cancer has been slow because it is genetically more complex compared to adenocarcinoma and mutates faster. So it is a harder target to hit. When I think of hard cancer targets, I am reminded of Siddhartha Mukherjee’s superb book The Emperor of all Maladies. He aptly describes the challenge of chemotherapy as “finding some agent that will dissolve away the left ear and leave the right ear unharmed.”
    He also called cancer a “clonally evolving disease.” Cancer cells grow by cloning at a rate far faster than normal cells. Every new cohort creates mutants and some of these survive the assault of chemotherapy. All that need survive is one; it will rapidly grow now immune to the drugs targeted to kill it. Mukherjee said: “the genetic instability, like a perfect madness, only provides more impetus to generate mutant clones. Cancer thus exploits the fundamental logic of evolution unlike any other illness.” Cancer is pure evolutionary nastiness!
    “Better things for better living through chemistry” was the tagline of the DuPont Corporation. Growing up in southeastern Pennsylvania, many neighbors were chemists commuting to the company research center, just across the Delaware state line. DuPont changed our world evolving from an 1802 gunpowder maker to inventing Nylon, Mylar, Teflon, and Nomex to name a few. Squamous cell lung cancer survivors need better chemistry. The call goes out for a biochemist to step-up and shut down the perfect madness of the clonally evolving squamous cancer cell.
    Stay the course.
  6. Tom Galli

    We are Not Concrete

    By Tom Galli,

    I just completed a most unusual intellectual assignment—evaluating molecular biology and pathobiology research grant applications.  When I learned of my assignment, I wondered how I’d make the academic stretch from civil engineer to biologist. 
    Sure, on a good day, I can spell pathobiology correctly without aid of a spell checker. Why would someone deliberately assign me to review molecular biology stuff?  I’d forgotten.  I was a lung cancer survivor and expert, not by education but by experience.  Those who survive have relevant first-hand experience that can’t be learned in any university.  Some research grant institutions require a “consumer” evaluator to assess the impact of applications.  In the case of lung cancer, the consumer is a lung cancer survivor.
    My experience came in handy.  We were asked to score the impact of each proposal.  Even basic science research has discernible impacts.  Knowing, for example, Squamous Cell Lung Cancer does not benefit from adenocarcinoma-targeted therapy enabled me to assign higher impact scores to proposals aimed at immunotherapy advances against Squamous Cell Lung Cancer.  Might scientific researchers know this?  Perhaps, but I know it; I live with it every day.
    In a pre-evaluation conference, a veteran consumer evaluator suggested I start a technical term dictionary, capturing definitions of technical terms in a spreadsheet for easy reference.  My biology vocabulary is substantially expanded by understanding hypermethylation, epigenetic, methylation, and cytosine to name a few.  Technology makes understanding these terms simple—Google the term and add the word “definition”. 
    Modern technology astounds me.  I was a “slide rule jockey” through college going blind multiplying, dividing, and deriving roots and powers.  But it was slide-squint-copy, and rinse and repeat.  Now one Googles up the equation, substitutes values, and presses enter!  Try it yourself.  Google “what is the square root of 2356875.6”  Simple!
    So computer-aided understanding allows even a novice to discern the complexities of biological expression.  And, our participation in evaluating research is essential.  Why?  Because there is a vast difference between experiments performed in vitro vice those performed in vivo.  We are the in vivo!  We should be a check and balance before a path of discovery is established that subjects us to poking, prodding, discomfort, or worse.  After all, we are not concrete. 
    Stay the course.
  7. Tom Galli

    Lung Cancer Accounting

    By Tom Galli,

    LUNG CANCER ACCOUNTING—A METHOD TO WIN THE BILLING BATTLE
    Treatment for lung cancer was, hands-down, the hardest thing I ever endured.  What’s the second hardest?  Without a doubt, it is settling treatment bills.  After nearly 13 years, I still get them.  Despite all of the advances in information technology, medical invoices, including medical insurance invoices, are the most unnecessarily complex documents ever created.  Their level of useless intricacy bests even lawyer generated minutiae.
    I've got a method, a foolproof way to organize, understand, and pay.  This avoids both double payment and long periods on hold listening to elevator music while waiting to talk to someone who knows absolutely nothing about your problem.  Here are my ten steps to winning the lung cancer treatment billing battle.
    1.    At your time of treatment, ask the treating physician to tell you the treatment code or codes to be reported on your medical record.  Write this information down, including the date of service (DOS) for each code.  A smart phone calendar application is the perfect way to capture this vital information. Just put the codes on the calendar.
    2.    Also ask if a third party provider (someone outside your doctor’s practice) will provide lab or diagnostic work.  Get the names of these providers and treatment codes used for their services.
    3.    Build a record of information for data captured in steps 1 & 2.  I use a computer spreadsheet but an old-fashioned pencil and paper ledger will work just fine. Here’s an example:

    DOS - Date of Service, PC - Procedure Code, PROV - Provider, MS - My Share, PD BY - Paid By, PD DT - Paid Date
    4.    As bills come in, add new information to the spreadsheet. I record as I open so I don’t miss anything.  Highlight the DOS and PC on each bill with a bright colored highlighter, then staple or paper clip together by DOS.
    5.    On arrival of your insurance statement, update your spreadsheet adding INS ALOW, INS PD and MS. Don’t worry about amounts insurance reduced or denied.  If your provider accepts your insurance carrier, they must abide by insurance allowable charges. Attach the insurance claim to bills by DOS.  You may need to make copies because insurance claims often cover multiple DOS.
    6.    Do not pay anything to anyone (exception COPAY) until your insurance pays.  Then only pay (MS) and complete PD BY and PD DT on your spreadsheet.
    7.    Keep all this paperwork together in a single manila folder.  I keep mine on my desk along with a supply of paper and binder clips to keep things together.
    8.    I use this method for hospital bills but there could be pages of procedure codes covering several dates of service. Make an entry for each DOS and record all the PCs per DOS. You’ll need to mine this information from the statement because hospital visits often consist of many dozens of PCs.  Consulting doctors who treat you in the hospital must cite DOS and PC on their invoice. You may never meet these doctors (radiologist, pathologist and etc) but you’ll track them to the hospital stay by matching up the DOS.
    9.    Hospital invoices take months to arrive while attending physician invoices take weeks. Match them up and wait for the insurance claim before paying anyone. 
    10.  This method simplifies claiming federal income tax medical expense deduction. Come tax time, filing will be a snap.
     
    I’ve paid thousands of medical bills. The only thing worse than the assault of bills is assault by bill collector.  In the days before organization, I’d hunt through piles of paperwork and bank records trying to find information on a bill I know I paid.  Not being organized means I likely paid twice just to stop the telephone calls.  I recall the day I received a bill collector call after I stood my method up.  My data shut him down.  I went from hello-to-cancelled-check-to-good-by in seconds. It felt so good!
     
    Stay the course.
  8. Tom Galli
    Chances are you pay attention to new treatment developments. I was aimlessly scrolling through a social media app when I happened on a dramatic interview.  Everything was staged to look legit.  The interviewer looked like a TV reporter, the background scene looked like a doctor’s office, and the set up question “doctor, let me talk about cancer a little bit” got my attention. 
    The camera changes views to the doctor as the reporter says, “what are some of the things you’ve seen in terms of your patients?”  Then we see the doctor.  He looks like a doctor, well dressed with a confident assuring voice.  He changes the subject saying “a better thing to talk about“ and his name and titles flash and disappear on the screen: Peter Glidden, BS, ND (note not MD).
    He cited an unnamed study published in the Journal of Clinical Oncology in 1994, a 12-year program that looked at adults who had developed cancer, further clarifying adult cancer as “the main type of cancer we get here in the United States.” He described the study as a “meta analysis of people all around the world for 12 years who were treated with chemo…and the result?”
    “Ninety-seven percent of the time chemotherapy does not work.”  Dramatically and shaking his head for emphasis, he repeats the same statement, then he asks “so why is it still used?”  “Money”, he answers. “Chemotherapeutic drugs are the only classification of drugs that the prescribing doctor gets a direct cut of…the only reason chemotherapy is used is because doctors make money from it…period…it doesn’t work…97-percent of the time.”
    Continuing, he says: “We have lost the war on cancer in the United States…why…when you try to bring a reductionistic phenomena like drugs and surgery to bear on a holistic phenomena, you will completely miss the boat each and every time.”  Further he emphatically states, “if every girl in this country took 200-micrograms of Selenium, in one generation, we’d eliminate breast cancer by 82%; now why aren’t we doing that?”
    So, let’s take a deep dive into Peter Glidden’s claims and supporting data.  First, consider his probability predictions: 97-percent of the time chemo doesn’t work and 200-micrograms of Selenium eliminates breast cancer by 82% in one generation. These predictions sound authentic, like there was a test to determine outcomes.  But, no scientist, doctor, or engineer would ever describe a statistically based probability outcome using just a naked percentage. 
    There is always uncertainty and professionals bound uncertainty with a confidence level.  An engineer might say that concrete will achieve a 6,000 psi end strength but will disclose the testing sample size, mean, standard deviation and confidence level that justify the end strength statement. Test results never exactly replicate. The end strength will vary between some acceptable range.  But Glidden’s claim is precisely 97-percent.  It is unsupported.  Moreover, it is debunked in the literature.  Here is a good on-line summary about the unsupported claim .
    But, to even make a 97-percent statement, one would need to know, with certainty, the cause of death of each of the thousands of people who had chemotherapy.  Were autopsies performed? Might some have died of natural causes, traffic accidents or other illnesses?  A statistically significant record of “meta data of people all around the world treated for 12 years” does not exist.  Do they have data in the Fiji Islands, Kenya, Somalia, Bangladesh or North Korea?
    How about his 200-microgram Selenium cure for breast cancer?  He says it would eliminate breast cancer by 82% in one generation.  I’m not even sure I know what eliminate by 82-percent means. Think about how imprecise this claim is.  How long is one generation? How did you determine it was 82%? How sure are you it is 82%? I could drive a main battle tank through the gates of this claim’s imprecision!
    Now to his claim that cancer is not a reductionistic phenomena, suggesting that drugs or surgery misses the boat “each and every time.”  I’m one of those “each and every time” and my survival from drugs and surgery proves him wrong.  Does naturopathic treatment actually cure cancer?  I don’t know but neither does Gladden.  Here is some interesting reading about Naturopathic Doctors. 
    Peter Glidden’s video extolling a simple nutritional supplement as a cancer cure is compelling. He is dramatic, confident and to a diagnosed lung cancer patient facing an arduous regime of chemotherapy, persuasive.  Why bother with the chemotherapy if I can take Selenium and cure my cancer?
    If you are reading this, you or someone you care about has lung cancer.  Time is of the essence.  You have but three choices: do nothing, conventional medicine, and holistic medicine or some derivative of the same.  Do nothing is the least expensive alternative.  You pay nothing and might live.  Miracles happen. 
    Conventional medicine and holistic medicine will cost your money.  How do I make the choice?  I put my money on science-based conventional medicine treatment because treatment outcomes are repeatable.  Mark Twain said it best: “It ain’t what you don’t know that gets you into trouble. It’s what you know for sure that just ain’t so.”  Gladden is trying really hard to convince us he’s 97-percent sure chemo doesn’t work.  It just ain’t so.
    Stay the course.
     
  9. Tom Galli
    Now, long after the commotion of active treatment, my wife and I often share recollections. Martha is my caregiver and for more than 3 years of near constant therapy she held the long thin line. In doing so, she had to confront my anxiety, discomfort and fear. These were variable; the constant foe was my general irascibility towards medical treatment. Now a 12-year survivor, we both laugh at some of my antics. But during treatment, there was high drama to deal with.
    It is not easy to watch someone you love encumbered by all manner of tubes and wires in intensive care. Nor is it pleasant to attend to the full-throttle roar of chemo-induced side effects. Moreover, there is recognition that the side effect bedlam will occur with the same progression and intensity a short time in the future. Add to that the burden of failed treatments and the inability to influence outcomes. These are the plight of the caregiver.
    While in the throes of treatment, most appreciated were the little things Martha did for me. Discharged from hospital with a chest tube in my lower back, scratching my back was a godsend. I was beset with “taxol toes” and rubbing my feet with Aspercreme provided immense temporary relief. But most appreciated was her homemade chocolate mint chip ice cream. This was an effective counter to a waning appetite, enormous attitude boost, and a relished wonderful concoction.
    There is a fundamental reality about treatment recollection: the patient and caregiver have vastly different memories of the same event. I find it useful to accept Martha’s version as a higher order truth for two reasons. She was an observer and not under duress, and I was normally at wits end totally undone by the experience.
    This difference in perspective points to the essential role of the lung cancer caregiver—a steady hand in a sea of turmoil.
    Stay the course.
  10. Tom Galli
    “Terminal stage IV lung cancer patient miraculously cured by cannabis oil.” “Frankincense oil kills cancer cells while boosting immune system.” “The real reason pharma companies hate medical marijuana is because it works.” If you are a lung cancer survivor, you’ve read these pronouncements. Hopefully, you don’t believe them. The purveyors of miracle cures are so persuasive that some people avoid conventional treatment and rely instead on the unconventional.
    I remember my frantic web search for treatments after diagnosis. I explored conventional methods and learned about lots of downside and little upside. Reading the benefits of aromatherapy, guaranteed to cure my lung cancer by simply breathing a fragrant substance, was so appealing. Then as others learned of my diagnosis, I was bombarded by emails suggesting holistic medicine, Breuss diet, and magnetic therapy, to name a few. All that need be done to cure my lung cancer was move a powerful magnet over my chest for 30 minutes a day! Of course, one needed to spend thousands of dollars to purchase the special magnet but it was a money-back guaranteed cure.
    There are miracles. These are medically documented instances where cancer stopped growing and spreading without treatment. But those touting magnets, cannabis oil, or a multitude of other treatments, methods, or substances (check Wikipedia’s list of unproven and disproven cancer treatments) are selling miracles. A miracle, in case you are wondering, is an event that defies explanation. No one knows why, including the seller of miracle cures.
    When stricken by lung cancer, time is of the essence. We are often diagnosed at late stage and effective treatment must be prompt. Consuming time to undergo Miracle Mineral Supplement or Orthomolecular Medicine at great expense eats into this now precious time. Here are three tests one can apply to sniff out a phony cure: (i) drugs and procedures not FDA approved; (ii) drugs and treatments not covered by insurance, and (iii) the patient needs to pay large amounts of cash in advance of receiving treatments. Oh, and check out Quackwatch.
    Our world is plagued by conspiracy as in: “big pharma has a cure but is withholding it from the market to boost profits.” Sure! Think about it. A publicly traded corporation has a cure for cancer and is not selling it—that would never happen. Recall how quickly we learned of Cuba’s cancer vaccine, and Governor Cuomo’s ex-officio trip to Cuba before restoration of diplomatic relations to negotiate putting the vaccine under accelerated FDA testing. A sure-thing cancer cure would be front page news on every paper around the world!
    Oncology is a medical discipline founded on science and grounded by rigorous studies that are openly published and reviewed by doctors and scientists around the world. New treatment and diagnostic methods are well vetted to ensure both safety and effectiveness. An oncologist dedicates his or her life to treating people with cancer. When a board-certified oncologist tells me about a miracle lung cancer cure, I’ll believe it.  
    Till then, it walks like a duck.
    Stay the course.
  11. Tom Galli
    The modern world is full of scams, lies, untruths, and junk science.  Indeed, for a lung cancer survivor or caregiver, finding truth about lung cancer in our Internet world of mis-information is extremely difficult.  How do we know what to believe?  Perhaps you've heard of Belle Gibson, the health food purveyor and wellness guru, who spent years convincing us she had a cure for cancer.  Don't know the story?  Read it here.  How did we buy into Gibson's claims?  How do we avoid another scam trap? Here is my list for sniffing out a phony lung cancer cure scam.
    1. Ignore anyone who broadcast-messages a cure for cancer.  No one discovering a cure to cancer will announce it on a daytime TV show, or a TV infomercial.  The person discussing the "cure" will more likely act and talk like a nerdy scientist rather than a TV or movie personality.  The announcement language will be hyper-technical, interspersed with statistical terms comparing this to that under a given circumstance. The announcement could be televised but the audience will be filled with scientists and physicians.  But before the telecast, there will be a series of journal articles discussing and critiquing the findings.  The announcement will likely follow the form and tenor of the CERN Higgs Boson "god particle" discovery.  Watch that coverage and mentally compare it to an episode of The Chew.  If you don't hear words like "the combined difference of five standard deviations", you are listening to a hoax.
    2. The cure announcement won't be a sales pitch.  Think of the biggest news event you've ever seen, say the announcement of 9-11.  Discovery of a cure to cancer will be bigger -- much, much bigger!  It will be a world-wide-headline-news story and will be announced by a government.  Following the announcement, there won't be a 1-800 number or world wide web address to buy the cure!  It won't be a pharmaceutical company announcement.  Yes, new drugs showing progression free survival improvement are announced in pharmaceutical company news releases, but these are clinical trial results for a new therapy, not a "cure" announcement. And recall what a new lung cancer treatment drug commercial looks and sounds like.  There are all these legal disclaimers, side-effect disclosures, and restrictions on taking the drug.  A lung cancer or any cancer cure won't be a commercial advertisement of a drug or treatment. It will be a celebration and the biggest news event of your lifetime!
    3. Be very wary of a dietary supplement touted as a cure.  Cancer is a disease of the human genome.  Each of us has the genetic predisposition to have every kind and type of cancer ever discovered. Science understands the genetic nature of the disease and a changes in diet or taking a dietary supplement does not change or effect our genetic make-up.  A change in diet to lose weight, avoid diabetes, or improve cardiovascular health is a good thing, but no one claims taking a dietary supplement or a change in diet cures diabetes, heart disease or cancer, except scam artists.  A healthy diet has many benefits; curing cancer is not one of them.
    4. Self-promoters touting heroic cancer survival stories are scammers.  If you want to read and believe heroic survival stories, they are in forums such as this one.  Our survival stories sell hope; they don't sell product.  No one here is seeking fame for surviving lung cancer.  Certainly, no one here is getting rich surviving this awful disease.  Real lung cancer patients know that cancer sucks, treatment sucks, scans suck, the whole process sucks.  No one here sits for a TV interview claiming to beat lung cancer by taking this, that or the other thing.  While the first rule to being successful in sales is to sell yourself,  we are not selling anything.  
    5. Social media promotion is a scam in the making.  Who is going to offer a product or treatment that cures cancer on social media -- a scam artist!  Social media likes and shares are not scientific peer reviews.  The Super Bowl Justin Timberlake selfie boy achieved overnight fame, but for what? Perhaps he could use that fame to sell tee shirts, but a lung cancer cure?  Seriously?  And be wary of news outlets who publicize these miracle cure announcements.  TV and newspapers sell scam promoters also.  They publicize sensationalism so a 30 second report on your 5 o'clock news of a wellness guru who discovered a cancer cure is what -- a scam!  Do you know of TV reporters with a PhDs in Microbiology or Pharmacology?  Where do they get the competency to evaluate scientific claims?  Here's the point; they don't care about scientific authenticity; they want to generate sensationalism.  Media sensationalism sells media, not cancer cures.  Social media clicks sell social media, not cancer treatments.  
    Lung cancer is a horrible disease.  Sadly, there are horrible people in this world who take advantage of our misfortune to rob us of time and money.  Only our vigilance and common sense can protect us.  Remember, there is no such thing as a cancer cure, yet!  When one is announced, the world will know and celebrate.
    Stay the course.
     
  12. Tom Galli

    Comprehending the PET

    By Tom Galli,

    Almost every lung cancer survivor has a positron emission tomography (PET) scan these days. Now, a PET is often given with a computerized axial tomography (CT) scan.  The diagnostician is a radiologist; a discipline that does not write in lingua franca. What do the report words mean? Here is a summary of my August PET-CT to interpret radiology speak.
    INDICATION: (Why am I getting this scan) “The patient…with non-small cell lung cancer of the right main bronchus diagnosed in 2003 status post pneumonectomy….He has undergone previous surgery for bronchopleural fistula repair…Chemotherapy last administered May 2006…Cyberknife therapy for recurrent disease in March 2007…He more recently has cough and chest discomfort.” That’s me, no doubt, but this summary is important.  Radiologists see many scans and sometimes results are misreported.
    TECHNIQUE: (Test scope and method)  Note details about the accuracy of the CT.  “These images do not constitute a diagnostic-quality CT….” The CT results help to precisely map or locate the PET results but cannot generate a diagnostic grade image.
    COMPARISON: (Other scans reviewed while looking at this one). “Report only (no image reviewed) from PET-CT 3/8/2013.  CT of chest and abdomen 8/22/17 (looked at image).”  A CT scan is normally performed first.  PETs follow and accuracy is enhanced if the radiologist has access to prior images. To improve access, have all your scans done at the same medical facility.
    FINDINGS: (The result) “…showed no convincing PET evidence of FDG-avid (fluorodeoxyglucose — radioactive tagged glucose seeking) recurrent or metastatic disease.” This is what we want to see in the first sentence.  Then, the radiologist peels back the onion with detail.  
    “There is mild heterogeneous hypermetabolism (diverse increased rate of metabolic activity)…with a few small superimposed foci (above the hypermetabolic area that is of particular interest)…more intense activity showing a maximum SUV of 3.5 (SUV — standardized uptake value)….When compared to [past reports] uptake…showed SUVs ranging from 2.6 to 2.9. This is strongly favored to be inflammatory.” Relief —this is my chronic pain site caused by 3 thoracic surgeries in the same location!  
    “A somewhat retractile appearing mass (drawn back into lung tissue)…in the left upper lobe is stable in size…This shows minimal uptake…and is most compatible with the site of treated tumor.” My CyeberKnife-fried tumor scar.  I do love precision radiation!
    What are concern ranges for SUV uptake? First, consider what is measured — cellular metabolic rate; more simply is demand for glucose, the fuel of metabolism.  Cells with high metabolism ingest more tagged glucose. The PET shows differences in consumption (uptake).  SUVs below 2.0 are normal.  SUVs above 2.0 are suspect but between 2.0 and 4.0, uptake could be from injury or inflammation.  Readings above 4.0 tend to be cancer but there can be other explanations. Higher than 4.0 is likely cancer, especially when paired with a CT find. Cancer demands glucose to fuel mitosis or growth by cellular division.  
    Get and keep copies of all your diagnostic imaging.  Keep track of the findings.  I use a spreadsheet to record date, location and indications.  Dr. Google is a great source for medical definitions. The best possible outcome for any scan is NED (no evidence of disease).  May NED be with you.
    Stay the course. 
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