Meloni 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.
Meloni reacted to Tom Galli for a blog entry, Know The Enemy -- The Cure Scam Artist
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.
Meloni 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.
Meloni reacted to LaurenH for a blog entry, Rose Vining's Story
I was diagnosed with lung cancer in August of 2011 out of the blue, totally unexpected. I went for a regular checkup after experiencing some gastric reflux and abdominal pain. The doctor suggested an abdominal CT scan. He called me back into his office and told me that, although the scan was of my abdomen, a part of my lung had been included. A little shadow had shown up there that concerned him. He asked me to undergo a second CT scan, this time of my lungs. That scan revealed a prominent area of masslike consolidation in my left lower lobe. The next day I saw my pulmonologist, who scheduled me for a needle biopsy. At the time, he didn’t think that the scan findings really indicated a lung cancer. I was not concerned either, as I had never smoked and had little history of cancer in my family.
I was traveling home from a visit with some friends when I got the call from the hospital. The emotional voice on the other end was cracking. I didn’t even realize that it was my pulmonologist. He said, “We got the results from your biopsy. You have a very large tumor taking up most of the left lower lobe of your lung. We have to get this right away. We’ll get through this honey.” It was surreal. I thought it was a mistake.
I was diagnosed with non-small cell adenocarcinoma. They scheduled surgery right away to remove a lobe of my left lung. That was followed by chemotherapy. It was a very tough time. After I recovered from that surgery and the chemo, I just wanted to go back to my life. I’d been very happy with my life. I was a volunteer chaplain. I didn’t know any other survivors and I didn’t want to think about lung cancer anymore. They said I only had 15% chance of the cancer coming back so I wasn’t going to worry about it.
A year later, the cancer came back. Looking at the scan, I felt like I was in a nightmare. The second surgery to remove the rest of my left lung was easier, because I knew what to expect. But after that surgery and treatment, I knew I needed to get plugged in and started searching online for an organization that could help.
I liked that LUNGevity Foundation was constantly posting helpful information and seemed focused on survivors. Before I was diagnosed with cancer, I had enjoyed the experience of mentoring, so I applied to be a LifeLine support partner. Nikole from LUNGevity reached out and invited me to attend the HOPE Summit survivorship conference. One of my friends went with me and we had such a wonderful time. HOPE Summit changed my life.
Before that time, I had been pretty isolated as a survivor. When I walked in and saw that many survivors, I was amazed and overwhelmed. Hearing others share their experiences changed my whole attitude. The main thing I came away with after HOPE Summit is “be your own advocate.” My amazing friends that I met through LUNGevity connected me with my current doctors at UT Southwest.
Any time that you need support from LUNGevity, it is available. I am a LifeLine mentor to other survivors, but I also have LifeLine mentors who have helped me through two recurrences of cancer. They’ve really inspired me and kept me looking forward. Mentoring is a two-way relationship. If they’re feeling down, I can help them and if I’m feeling down, they can help me. It is so rewarding. I’m also a LUNGevity Social Media Ambassador.
I’m a big believer in the power of connection. If we isolate ourselves, we focus more on the negatives and everything that’s wrong. But if you’re out there connecting with other survivors, you’re sharing the ups and the downs, you’re not alone. It really helps. The advice I like to share with other people who have lung cancer is if you don’t like what one doctor says, it’s very important to be your own advocate. It’s your life!
Meloni reacted to Tom Galli for a blog entry, The Smoking Gun
We often hear smoking gun used to describe the “ah ha” moment of a who done it. I was unsure of the meaning and asked Siri. My Apple genius defined it as “as piece of incontrovertible incriminating evidence.”
I know two things with high confidence: (i) there is a very strong correlation between smoking and lung cancer, and (ii) implying smoking as a cause adds to the self-induced stigma that smacks down research for my disease. So, how do we address the stigma without pointing the smoking gun?
I couldn’t stop because I was addicted to nicotine. When I was young and fearless, almost everyone smoked and I joined the crowd. In my 30’s, most quit. I tried, many times and ways, but couldn’t. My addiction was stronger than will power. Addiction is irrational. Most addicts recognize the harm, but recognition caves in the face of physical craving.
How is addiction to nicotine different from alcohol, heroin, or cocaine? It isn’t but what do the health authorities call it? The Center for Disease Control (CDC) says smoking caused 480,000 deaths last year in the United States. Note absence of the word addiction. The CDC also says about 88,000 people die annually from alcohol abuse. Note abuse is not addiction. Almost 35,000 people died from heroin overdose in 2015, according to the National Institute of Health. Note again, overdose is not addiction. It is unreasonable to suggest these deaths resulted from one time or occasional use.
I contend not using addiction to characterize the root cause is part of the problem. If I smoke, abuse or overdose, I am branded guilty of doing something wrong. I am causing the problem. There is no disease or medical abnormality; therefore, there is nothing to research. This individual guilt becomes a collective stigma. If our national health authority doesn’t treat use as addictive, it certainly won’t be prone to find new treatments. Nor, will there be interest in treating consequences. Thus, the paltry research funding for lung cancer.
Many people experiment with addictive drugs and are fortunate to stop short of addiction. But, when one can’t stop, one is addicted and mechanisms must be found to treat the addiction. So, let’s change the nomenclature. I am addicted to nicotine and my addiction likely caused lung cancer. Where is the smoking gun pointed now?
Stay the course.
Meloni reacted to Tom Galli for a blog entry, Thirteen Years; Thirteen Toes!
Today we celebrate 13 years of surviving NSCLC. I'm borrowing three toes from Martha, my wife and caregiver extraordinaire, who deserves most of the credit for my continued life. Martha did the heavy lifting during treatment, asking the right questions at the right time, and prodding my medical team with just the right touch. By comparison, I was at wit's end during my nearly 4 years of continuous treatment. Doctors McK (GP), H (Oncologist) and C (Thoracic Surgeon) also deserve a lion's share of credit. Collectively, they share a trait that distinguishes them from the rest of medical community -- they treat people, not patients.
The red toenail painting tradition was started by a Dr. Phillip Berman, radiologist and never smoker, who was diagnosed with Stage IV NSCLC. In an early Internet cancer website he founded, RedToeNail.org, he vowed to paint a toenail red for each year he survived what he called "this nastiness." He painted 5 before passing but taught me a great deal about living with lung cancer. During treatment, he was playing with his children, exercising, interacting with friends, and finding something to enjoy every day. In other words, he embraced the life he had and lived every day reveling in the joy he discovered. His lesson -- those who choose treatment choose life and the important thing is to do something with the life you have. I pass his powerfully evocative message to you. If you suffer with lung cancer then resolve to live every day and find something to enjoy. Realize that if I can live, so can you. Paint your toenails red!
Stay the course.
Meloni reacted to Tom Galli for a blog entry, A Political Test for Physicians?
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.
Meloni reacted to Tom Galli for a blog entry, Grandfather and Survivor
Meet Charlett Emilyrose Wilson, my first grandchild. Her parents, daughter Melissa and son-in-law Bill, are overjoyed. I am ecstatic! Proud would be a vast understatement!
Charlett was born 12-years, 8-months, and 13-days after my diagnosis with NSCLC. I celebrate this joyful milestone in my life for but one reason. If I can live, so can you.
Stay the course.
Meloni reacted to Tom Galli for a blog entry, Lung Cancer's Painful Quadratic Equation
Early on, we learn Algebraic equations with only one solution. Then we encounter equations with two solutions -- Quadratic Equations. Consider: x2 + 3x – 4 = 0. This has two solutions: x = -4 or x = 1. Both are correct; one is negative and one is positive. Algebra students get very comfortable with solutions having a positive and negative outcome -- lung cancer survivors are less comfortable!
The positive outcome for lung cancer is extended life. But like quadratic equations, there can be negative outcomes that are less desirable. Mine is chronic pain. So to the question, how does one fit a negative outcome into the positive? No, Algebra does not help. But, for those in treatment or surviving after treatment, preparing for life with negative outcomes is helpful.
My chronic pain has two primary and many secondary causes. I have peripheral neuropathy -- numbness in fingers and toes including a burning sensation in toes and pain in the foot joints. It is a common Taxol side effect, and we informally call it “taxol toes.” Also, I have nerve damage caused by quite a few surgeries to my right chest that is chronically painful. How do I fit these negative outcomes into life?
My strategy is to tolerate chronic pain until bedtime. Then something must be done or I won’t sleep. I’ve cycled through over-the-counter, then prescribed sleep medications. Both worked for a while. Doc found a study suggesting a therapeutic effect for Xanax on chronic pain. He prescribed a 0.5mg dose at bedtime, allowing an increase to a total of 1.5mg. This relaxes me and makes me drowsy. It works about 6-in-10 nights.
A secondary cause sometimes drives pain above chronic levels. These are: chemotherapy induced joint pain; muscle cramps; stress, anger and excitement; sneezing and coughing; and flying on aircraft. The joint pain, an in-treatment side effect, required narcotic medication in every case to relieve. Reliance on narcotics has two downsides: an inability to think and function normally the next day and constipation. However, other secondary causes occasionally require narcotic medication to achieve relief. Because of the downside to narcotics, we’ve developed a couple of unique pain abatement procedures that may be of interest.
Our first strategy is to apply prescribed lidocaine transdermal patches to incision scars and or feet in combination with Xanax. Since lidocaine dosage is limited to 2 patches, my wife cuts them into strips and fits them along my incision scars, and applies them to my feet. A pair of tight fitting socks are stretched over my feet to keep them in place. When the offending pain spike is either in my chest or feet, a full 2-patch application is used. The patches are applied in time to allow the Xanax to work and I sleep, hopefully.
The next works only for feet and is a back-up strategy if lidocaine fails. My wife uses an ace bandage to wrap reusable frozen Blue Ice packs to the bottom of each foot. The cold is very uncomfortable for a couple of minutes, but in a short time my feet are numb and if I’m lucky, I sleep.
Muscle cramping is a long term side effect from chemotherapy. It stems from low Magnesium blood levels. I take at least 500 mg of Magnesium supplement per day. My oncologist would rather I take 1000 mg, but I suffer digestive system revolt. I learned that almonds provide 75 mg of Magnesium per ounce so I snack in lieu of a second pill. Regardless, I still experience one to two cramping events per day. When they occur anywhere near my feet or chest, chronic pain soars. There is however, no remedy for cramps. The worst occur in the middle of the night and wake me up.
Archimedes, the ancient Greek hydrologist, provided an explanation for why immersing up to my neck in a swimming pool eases incision pain. The upward buoyant force of the water offsets the gravitational pull on chest incisions thus minimizing pain. Almost every day our community pool is open, I spend hours in the water. This does not eliminate pain but reduces it noticeably. On leaving the pool, the normal level returns but it is very therapeutic. Lying in a bathroom tub, unfortunately, does not work because there is not enough water for complete submersion. A hot tub works fine, but there is no difference in pain relief from water temperature.
Flying in a commercial airliner also spurs chronic incision pain. Most airlines pressurize their cabin between 6,000 and 8,000 feet pressure altitude. This lower-than-sea-level pressure expands my chest cavity increasing incision pain. All commercial flights hurt but long flights are very painful often requiring a dose of narcotic medication in flight. Not flying is the only remedy. Those having thoracic surgery have long complained of incision pain after commercial air flights and cabin pressure is the cause.
Another secondary cause is extensive coughing and sneezing. Sneezing is particularly bad when it is a “surprise sneeze”. During the worst pollen events, I stay indoors and I try and avoid school age children to keep the chest colds in check, especially when school is in session. The last secondary cause I have the most control over: stress, anger and excitement. Admittedly, excitement is the easiest to control except when the Dallas Cowboys are playing my beloved Philadelphia Eagles. These two games a year are indeed stressful and since I live among cowboys, someone is going to be angry over the outcome.
My wife reminds me when I complain too much that I am lucky to be alive. What’s a little pain given the alternative. She’s right. Doc reminds me to avoid scheduling things in the morning so I can sleep-in late if pain interferes. He’s right. Football season is right around the corner and it is a good thing games are scheduled in the afternoon and evening.
Now if the Eagles start winning, everything will be fine!
Stay the course.
Meloni reacted to Tom Galli for a blog entry, Uncertain Treatment Outcomes: A Baseball Model
Baseball is a game that requires patient players and fans. Like lung cancer treatment, there is a lot of waiting for something to happen. Also like lung cancer, the game is unpredictable. A single pitch can change the outcome of a game like a single cell can change the outcome of treatment. And like lung cancer, baseball has many uncertainties and these are defined by odds. The best hitters succeed a little better than one in three times; the best teams winning about six in ten games. Baseball players need to persevere against low odds of success to achieve victory. So do lung cancer patients.
A lung cancer diagnosis is devastating. Recurrence after treatment is common and traumatizing. We ought to prepare for the distress of recurrence. Treatment, even for those diagnosed at early stage, is not likely to be a walk-off home run. I was not prepared for treatment failure. How common is recurrence?
A National Cancer Institute study suggests about 33 percent of stage IA and IB patients experience a reoccurrence. Up to 66 percent of stage IIA, IIB, or IIIA experience a reoccurrence. Interestingly, these percentages are virtually identical for both adenocarcinoma and squamous cell lung cancers. What about stage IIIB or IV disease? The study reports recurrence about half that of lower stages but suggests this is due to competing risk of mortality.
Including surgery, my treatment success average was a dismal 1 for 5. That translates to a baseball batting average of .200, yielding a quick trip to the minor leagues. I had four recurrences after no evidence of disease (NED) treatments. We didn’t know perseverance was a requirement and we were not prepared.
How should we prepare? Here is what I didn’t do. Have a frank conversation with my oncologist seeking information on recurrence likelihood. Share this information with my family to ensure they were prepared for bad news. Finally, celebrate my NED state by fully engaging in life. NED is that extra life treatment buys and we did not take maximum advantage of it.
A sidebar benefit of surviving is accumulating lessons learned. I now completely understand that lung cancer is a persistent malady that is difficult to eradicate with unpredictable treatment outcomes. Like the best baseball players, we need to take our turn at each new treatment with a fresh perspective, forgetting our last experience and striving only to put the ball in play and arrest our disease.
Stay the course.