RuthieThomas 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.
RuthieThomas 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.
RuthieThomas reacted to KatieB for a blog entry, Submitted by Donna Fernandez
When my Stage IV lung cancer was discovered in October 2012, I was, as far as I knew, as healthy as I have ever been in my life. I was playing agility with my two dogs three or four nights a week and every weekend. For those who do not know, agility takes a lot of stamina and energy! (https://www.youtube.com/watch?v=OCFrUCu6F_g)
I went to the doctor because I kept gaining weight. No matter what I did, I couldn't lose it. Since I had always been tall and thin, the extra weight was disturbing me. I self-diagnosed thyroid issues.
I am not a doctor goer. When I went to the doctor on that fateful October day, it was the first time I had been in 10 or more years. I chose the doctor based on her name – I knew someone else who had the same name – and the fact that she took my insurance. This was the luckiest choice I could have ever made.
The doctor felt a very, very small knot on my collarbone. She sent me for a CT scan. That day.
She called in a few days to tell me that my thyroid was fine, but I had some strange cell activity in my lungs. I needed a PET scan, she said.
I had never heard of a PET scan. When we got off of the phone, I immediately began to research. And, what I found was scary. PET scans are used to determine malignant activity. Cancer????? Me????? But, I was as healthy as I had ever been.
Sure enough, I was diagnosed with cancer. Specifically, I was told I had Stage IV adenocarcinoma of the lungs that was both inoperable and could not be radiated. Chemotherapy was my only option.
I had watched my father die of lung cancer back when I was in my early 20s. His cancer was also discovered by accident, during a routine physical required by his place of employment. Six months later, at barely 49, my dad died. He went through hell during those six months after diagnosis, suffering through chemo and radiation. I had always said chemotherapy was something I would never, ever do.
Until it was my only choice.
I began chemo – a cocktail of Avastin, Alimta, and carboplatin – in early December 2012. I was one of those people who had a difficult time. No matter what nausea medicine we tried, I was incredibly sick the first week after an infusion. Fortunately, my health improved by leaps and bounds during weeks two and three. I was feeling pretty good when it was time for yet another infusion.
I underwent four infusions of the three drugs. My tumors responded. They didn't go away, but they shrank. After four treatments, my oncologist decided to change the treatment. For four more treatments, every three weeks, I received Avastin. I am one of the unusual ones. Avastin made me as sick as the three-chemo infusions had.
However, my tumors had responded. They shrank. They didn't spread. My oncologist was happy. He decided to give my body a break and stop all treatments for awhile. He expected my tumors to remain stable. But, a CT scan revealed that it wasn't to be. The tumors had grown back to nearly the size they had been prior to beginning treatments.
The oncologist told me that I basically had two choices. I could begin another line of chemo, with a drug that wasn't as effective and that had worse side effects than those I had already had. Or, I could participate in a clinical trial. It was not a difficult decision for me at all. I chose to go into a clinical trial.
I really didn't have great expectations for extending my own life, but I wanted to help others coming up behind me. So, I went to the UT Southwestern Medical Center, one of 69 NCI-designated cancer centers, in July 2013.
Nearly immediately, I was fortunate enough to get into a Phase III clinical trial. In this Phase, the drug or treatment is given to many people to confirm its effectiveness, monitor side effects, compare it to other treatments, and collect information that will allow the drug or treatment to be used safely. In my trial, the efficacy of the experimental treatment, immunotherapy, was compared to a known and common chemotherapy, Docetaxel. I was happy that I drew the straw that allowed me to receive the experimental drug.
Entering the clinical trial was the best thing that could have ever happened.
I now have been in the trial for over two years. I responded to it
immediately. Since I began the trial, my tumors have been completely stable. I have very, very few side effects. The worst happened early on – my thyroid quit working properly, so I now take a little pill once a day.
I go every two weeks for blood tests, doctor visit, and treatment. The treatment itself takes an hour to drip. Until recently, I was required to have CT scans every 6 weeks. However, the drug company amended the trial plan and I now have scans every 12 weeks.
The clinical trial and the immunotherapy gave my life back to me. I am able to live fully and completely – at a time when no one expected me to still be alive, much less living well!
I am: a lung cancer survivor
RuthieThomas reacted to KatieB for a blog entry, Submitted by Bobbie
I was diagnosed with SCLC January 2009 and as of today, 10/6/15, there is nothing in my lung except a scar from radiation. No sign of cancer. I beat the odds. I had 5 rounds of Chemo and started chest radiation after the second round. I started PCI 2 weeks after the final chest radiation. My radiologist gave me a lower dosage for the PCI and an additional 2 treatments because I also have MS and PCI causes demyelination.
I am cold all the time. I used to be hot. I don't sleep well. I am scared that it will return somewhere else in my body.
You may have heard the saying “I have cancer but it doesn't have me!” I say B--S---! You never get over the scare. I am a 67 year old female. There is hope!
I am: a lung cancer survivor
RuthieThomas 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.
RuthieThomas reacted to Tom Galli for a blog entry, Hope Is A Good Thing
Red, in white shirt and loose thin-black tie and sweating in Maine’s summer heat, is leaning on a rock-wall fence. He’s just opened Andy’s letter found under the black obsidian rock. In the background we hear Andy reading his evocative description of hope: “Remember Red, hope is a good thing, maybe the best of things and no good thing ever dies.” The movie Shawshank Redemption is a powerful story about hope and life with a message that should resonate with every lung cancer survivor.
I watched the movie the other day and made the connection. Andy was imprisoned for two life sentences with no possibility of parole. He was wrongly convicted of murder and throughout the story of his day-to-day life in prison, everyone tells him “hope is a dangerous thing.” On escaping, Andy proclaims that hope is “maybe the best of things.” The movie story line is exactly parallel to the plight of the late-stage diagnosed lung cancer patient ⎯- an unforgiving disease with hope as the most effective means of avoiding consequences.
For lung cancer, hope is not a medical remedy. While new lung cancer treatments are emerging more frequently now, basic research funding to diagnose and treat lung cancer lags other cancers. Perhaps the pace may pick up, one hopes. Perhaps a treatment may emerge just in time to save a life, one hopes. Perhaps a miracle remission occurs, one hopes. Hope may not be a medical remedy but, for many of us, it is our only effective medicament. And, in my case, hope is “maybe the best of things.”
Recall the story line of Shawshank. Andy’s future is confinement in a mind numbing institution, but he makes a choice to live in a different reality and works diligently, every day, on a novel escape plan. He makes a conscious decision to live. He embraces the hope of escape against all odds. Andy’s poignant characterization about life reveals his reasoning: “I guess it comes down to a simple choice, really. Get busy living or get busy dying.” Exactly!
Sometimes in the heat of lung cancer treatment, we forget its purpose ⎯- extended life. No one knows how long but life for most is extended. So what do we do with the extension? Re-read Andy’s characterization.
We long for a period of life extending into satisfying old age. But most without lung cancer do not dwell on the amount remaining on account. Lung cancer patients take careful measure of the balance. But, measure for what end? I believe, if one chooses treatment, then one chooses life. Rather than dwell on the remaining balance, focus on doing something you enjoy everyday. I suggest a survivor forget the past, declare the future irrelevant, and live in the day.
“Get busy living or get busy dying.”
Stay the course.