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  1. These definitions were provided by a general medical oncologist who treats most forms of cancer. He cautions that although the terms have distinct meanings, there is overlap. Cure. Should be reserved for specific diseases where recurrences happen quickly and one can safely say there is a cure. Not useful for diseases like most cancers where recurrences can occur up to 5-10-20 years later. Mostly applies to non-melanoma skin cancers. Commonly used by surgeons who don't follow the patient long-term and want the patient to feel good about the surgery. But this pronouncement can be VERY misleading as I have had patients without followup because the surgeon said: "I was cured,” and then suffered a recurrence. I use it with qualifiers, such as "about 95-percent chance of a cure" if someone is still free of disease at 5 or 10 years in concert with statistical predictions. 5-year survivor. This term is mostly used to describe patients if still free of disease at that time, and often implies a reasonable chance of a cure. Most commonly used term now and has supplanted the use of term "cure". No evidence of disease (NED). Describes how things are at a specific time, such as after scan, surgery, re-staging workup, after chemo, or XRT [radiation therapy]. This is a point-specific-term, and is good, but does not guarantee anything long-term. Remission. Similar to NED, but usually used after someone has had disease treated by XRT or chemotherapy and not just surgery but is a general term. It IMPLIES a complete remission but not always. The disease has disappeared at least for awhile, to exam or testing. Several sub classes of remission: Partial remission (PR) meaning at least 50% reduction in the bulk or evidence of the cancer, usually measured by size in mm or cm. Minor remission or minor regression suggesting the same but at least 25% reduction in size/bulk of the cancer and a less useful term. Complete remission (CR) meaning all evidence of cancer gone after some treatment. Once again, usually after XRT or chemotherapy, but not surgery (surgeons usually just say, "I got it all”). Complete pathologic remission (CPR) (also called complete pathologic response) usually implies that the patient received chemo or XRT PRIOR to surgery (neoadjuvant therapy) to reduce the size of the cancer prior to surgery, and in the final surgical specimen NO cancer was found pathologically. Often used for breast cancer patients. Partial pathologic remission like CPR but with a poorer outcome. Implies the cancer is sensitive to the treatment but not 100-percent, and often implies need for more therapy after the surgery. Stable. Implies the disease has not grown nor appreciably shrunk (due to variance in measurements, this often suggests a single change +/- 10%), and then the trend in change is the most important determinant. Used to be considered a reason to change therapy, but in some diseases may imply continued survival benefit, and thus no need to change therapy. Progression. This is the worst outcome suggesting significant growth or continued trend in growth and implies need to change therapy. If no therapy, then "Best Supportive Care" (BSC) like Hospice or comfort measures. There are three other terms used for surgery results: R0, R1, and R2. These describe visual and pathologic review of the resected cancer specimen. R0 implies all cancer removed. No obvious visually or microscopically identified cancer seen. This is the best result after surgery. R1 implies no visual cancer seen, but microscopically tumor can be seen at the margin of resection and suggests some tumor left behind. Likely needs additional resection, or if not feasible, XRT or chemotherapy afterwards to treat the area. R2 implies visual tumor left (macroscopic) and means the same as R1 but a less successful outcome ("I had to leave some tumor behind, it was attached to an artery or major vein, etc").
  2. 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.
  3. Any thoughts/Experience?? High doses of vitamin C to improve cancer treatment passes human safety trial https://www.sciencedaily.com/releases/2017/03/170330142341.htm
  4. Following a CT of Chest, Abdomen and Pelvis, & Brain MRI on October 23rd, a PETCT on Nov 3 due a suspicious New Nodule (1.1 cm x 1.3 cm) and a Bronchoscopy on Nov 10 (due to mild FDG uptake of 3.1 SUV) , I am happy to report I remain in NED status, hitting the 9 month mark on my 3rd round of surveillance testing. I will have to wait 4 weeks for return of all cultures taken but I’m happy the tissue samples etc were all negative for cancer. While this is what they expected, out of an abundance of caution, they decided to do the bronchoscopy. I remain a bit concerned that my Chromagranin A levels were somewhat elevated. They tell me this is likely inflammation related if I have or recently had a bacterial lung infection or pneumonitis. So not quite the “nothing to see here” result I would like, but certainly quite positive. Pelvis and abdomen also clear, and brain MRI continuing to improve since PCI in March. A great result and something else to give thanks for.
  5. Happy to share that my second round of surveillance testing shows no evidence of disease, no nodules (new or old), no densities (new or old) and no other findings requiring particular short term monitoring. I am now 6 months NED. This result was particularly good news as in mid May, I experienced a period of extreme fatigue, headaches, balance issues and nausea. I was literally fine one day and in a very bad way a day later. I was given a full round of tests and scans ( including check for pulmonary embolisms) and IV infusion of nausea medications. Consensus was pneumonitis and general inflammation. With the help of prednisone , a lot of sleep and time to heal, this situation resolved over a 4 week period and I have now had the best set of scans since my diagnosis. I’m back to my full gym/exercise regimen and went to a family reunion in Canada (1st time my family (siblings, cousins, nieces and nephews) has seen me since my diagnosis. Now I’m looking forward to a trip to Disney with my family and a chance to get back to living a bit more. For reference I was diagnosed with Limited Stage SCLC 10/31, 2017 and achieved NED in late January 2018 following Chemoradiotherapy.
  6. Three months following a 1/23/17 PETCT reporting complete response to 1st line treatment (NED - no evidence of disease), I’m happy to say my 4/23 PETCT reports “ No hypermetabolic masses or lymphadenopathy in the neck, chest, abdomen or pelvis” So while my name is Leo, today I’m happy being called NED . As a point of reference I was diagnosed with Limited Stage SCLC Oct 2017, underwent 4, 3 day rounds of chemo (Carboplatin/etoposide) with 30 concurrent Radiation treatments & concluding with PCI. In addition to the PETCT , a serum Chromogranin A Tumor antigen assay(test) fell within normal range for the first time since immediately prior to treatment. While acceptable ranges vary by the lab performing the test (protocols), the normal range for my lab was 0 - 95. Prior to the start of Chemoradiation treatment, my Chromogranin A was 900+ (Nov 13/17), had fallen to 165 by Jan 2 2018 (prior to my final round of chemo) and is now at 92. Needless to say I very happy with this outcome. That said, there were a couple of areas of Small FDG (sugar) update presumed to be effects of radiation treatment and pneumonitis related inflammation. These areas will be monitored over the short term to ensure the voracity of those conclusion. I’m told these radiation related effects are not unusual this early in the monitoring period. I hopeful in that regard. Any one else experience this? My final step in monitoring is an appt. with my Radiation Oncologist on May 1, having completed visits with my Pulmonologist and Medical Oncology team yesterday. I’m not only thankful for theses results , but also for the words of wisdom, advice, and experience sharing I have found here. It means a great deal!
  7. Summer has ended and baseball is in World Series mode. I’m a long suffering Philadelphia Phillies fan — a Phanatic! To have a lifelong fascination with a mediocre baseball club requires supreme dedication, unusual perseverance, and a strong conviction that tomorrow will be a far better day. These attributes are prerequisites for facing a daunting lung cancer diagnosis and enduring the arduousness of treatment. Danny Ozark, once manager of the Phillies, took the team from perennial cellar dwellers to contenders. He explained his formula for success thusly: “Half this game is ninety percent mental!” Dismissing the missing half, the same can be said of life after lung cancer treatment. Presume diagnostic and treatment routines of lung cancer are largely similar; the unique and difficult challenges occur post treatment. Adding Ozark’s missing half, coping with post treatment life challenge "is ninety percent mental.” Individually, each will face a distinct challenge set but universally, life will be different than life before treatment. How so? First was a misplaced expectation to return to pre-diagnostic life. After NED, there were so many things I could no longer do. It took a while to realize I needed to carve out a new lifestyle. There is a new normal life after lung cancer, but the mental challenge is finding it. No one gives you new normal; you have to make it. Several side effects became chronic conditions. Coping becomes a mental challenge. Everyday, I play a round of mind over matter. Most days my mind wins but I have to live with losing days. Too many in a row and I need help. Fortunately, my wife is a godsend. Plan to have someone trusted close by. I’ve learned to go well out of my way to avoid confrontation. There are no “civil” discussion these days. There is disagreement, branding, insult and anger. My spin cycle goes one step farther to pain. If I walk away, I may have a good day. I won’t if I don’t. I’ve learned to control how I feel about something and not caring enough to have an opinion works well indeed. My new normal life is both challenging and enjoyable. Achieving that state involves application of Danny Ozark’s recipe for baseball success — new normal life “is ninety percent mental.” Stay the course.
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