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Found 6 results

  1. As I shared with the group a short time back, after a year of NED (no evidence of disease), I was diagnosed with a local, limited recurrence of Small Cell Lung Cancer (Jan 2019) (I.e in the same location as original disease with no regional or distant Mets) I received 4 , 3 day cycles of concurrent Chemo (Carboplatin & Etoposide) and Immune Therapy (Tecentriq - day 1 of each cycle only) with three weeks between each cycle. Findings from post treatment May 1 PETCT found complete regression/response to treatment. Since May 1 I have continued on Tecentriq Immune Therapy (only) every three weeks and on August 1 had my first (Post NED) 3 month surveillance PETCT and am happy to share that there continues to be no evidence of disease, and no areas of concern requiring more frequent monitoring . Next Scans will be in November, (PetScan in addition to Brain MRI) so for now it’s back to Immune Therapy every 3 weeks, and living life. I’m grateful for the support of family, friends and this community among others since my 1st diagnoses back in October 2017. As always happy to share whatever additional information may be helpful to others
  2. New to the group and interested in learning all I can about SCLC. My wife was just diagnosed with Extensive Stage Small Cell Lung Cancer.
  3. LaurenH

    Nina Beaty

    I was first diagnosed with small cell lung cancer (SCLC) in January of 2014 from a biopsy of the tumor that was sitting on top of my left lung. I had no symptoms I was ill yet I was urged by a radiologist who was a friend of the family to get an early lung cancer detection CT scan of the chest because I had been a smoker years before and grew up in a household of heavy smokers. So for me, it came as a total shock when I was told my diagnosis and “to get into the city for treatment, ASAP. “ For the next two years, I went through the standard treatment for limited stage SCLC, -chemo, radiation to the tumor, and prophylactic radiation to my brain. Good news, the tumor had shrunk but bad news, a new one had begun to grow in my abdomen. Now there was no option left for me except to go on an immunotherapy clinical trial, which I began in June 2015. I know I’m one of the lucky ones. I’ve survived over two years thanks to being enrolled in the clinical trial with the bonus of having virtually no side effects. I first heard about LUNGevity through my oncologist when he invited me to be one of his “patient-guests” at LUNGevity’s Gala in 2016. Encouraged by the speakers and to learn about more about LUNGevity’s focus on increasing the quality of life for cancer survivors and their caregivers, I contacted Katie Brown, LUNGevity’s Vice President of Support & Survivorship, to become a volunteer. I wanted to support other SCLC patients who were probably as confused and conflicted about their choices as I was when I was first diagnosed with this less common type of lung cancer. Katie gave me information about “LifeLine”, LUNGevity’s peer-to-peer support program that matches patients and caregivers to mentors with similar diagnoses. LifeLine mentors forge a personal connection by getting to know their mentee, offering words of encouragement, and by sharing aspects of their own cancer experiences. LUNGevity connected me to my first LifeLine mentee in early 2017. When I’m on the phone with mentees, I try to get a quick take on what that individual would like to get from speaking with me. I usually keep my personal saga with SCLC brief so the mentees have a chance to tell me what’s been on their mind. Sometimes, a particular part of their cancer situation is upsetting or causing frustration, while other times, they would just like to talk it out and have me listen. If I hear we have points in common, I’ll say something like “I get it. X-Y-Z happened to me, too!” Then I reassure them that they will get though it and find the solution that’s right for them. Some mentees just want a one-time chat to know someone else has survived the same illness. Others, who don’t have anyone they feel close to, might call me more frequently. One time I called Katie to get her advice on how to handle a situation that I felt was beyond my capacity to deal with. She was very understanding and together we came up with workable solution. So if you become a LifeLine mentor, don’t be afraid to reach out to the LUNGevity staff. They’re there to support you, too. The most rewarding thing about being a mentor is hearing someone newly diagnosed with SCLC say, ”Oh I’m so glad I talked to you. I feel like this is doable now. If you survived, maybe I can too.” Hope is the most precious gift I could ever offer somebody, which may sound a bit drippy, but it’s so true. I get to offer hope every time I tell my story that I have survived longer than I, or anyone else, would’ve believed possible. Photo credit: Ben Hider for the CURE Magazine
  4. I am a 68 y.o. male who was informed by my pulmonologist that my lung biopsy was positive for small cell lung cancer. This diagnosis came with a feeling of relief that the SOB and fatigue I've been experiencing for over a year has a basis in reality and wasn't all in my head. I've been having PET and CT scans, blood work and numerous MD visits to my primary care, pulmonologist, and Sports Medicine doctor. It's been hard to focus on anything else but my health. I've been a smoker all of my life and take responsibility for my part in this illness, but don't feel I'm deserving of this fate and that I brought it on myself. Smokers and non-smokers can get this disease or don't get this disease, and it's just way the ball bounces. I moved from a provincial upstate NY town to NYC in 1969 to attend NYU and pursue a degree in occupational therapy. It was an extremely rewarding career and living in Manhattan for almost 40 years was the most enriching and exciting time of my life. Working in healthcare, and having a close community of gay friends and colleagues, exposed me to all the horrors of the AIDS epidemic in a very intimate way, in the 1980's. It was during those years I was forced to look at mortality and ways a person can learn to be comfortable with dying, living life to the fullest with great dignity, and being proud of one's accomplishments and relationships and accepting life's ending as natural and part of a process. I had to learn to let go of my intense anger that so many young, talented and valuable people had to go through this nightmare. I was glad that I never contracted the disease, but had a great deal of "survivor's guilt trying to understand why I was spared while so many people close to me had such agonizing final months. Living in NYC, there are all kinds of psychotherapists and groups that were part of normal NY'er routines and I was lucky to find excellent clinicians who helped me make peace with my inner demons and childhood traumas and learn healthy ways of dealing with my emotions. I worry about suffering and not being able to breathe, but I am not fearful of dying. I don't have a lot of regrets and accomplished many of my life's goals and have a good network of friends, although they are not nearby. I worry that my spouse Tony will have a hard time watching me waste away as I become more dependent on him to take care of me. He's seven years older than me and we assumed I'm the one who would end up being the caregiver. We just retired and were looking forward to many quiet years together, visiting family and friends, pampering our dogs, and taking short vacations to new places. While living in upstate NY, my MD recommended I have a lung CAT scan since I was a long time smoker and I followed his advice. I had complained of SOB and generalized malaise for a long time and thought after all kinds of other workups and no answers, this was an important avenue to pursue. The radiologist's report said I had two small lesions on my right lung but though they were probably benign and to have a follow-up CAT scan in two years. Nothing to be concerned about. I wonder if a lung biopsy had been performed at that time how much further ahead of the disease progression I would have been. It would have been to err on the safe side, but it's just a "what if". I am already limited in my ability to ambulate for more than 50 feet without becoming very short of breath, with pain increasing in both my hips the further I go, so going too far or engaging in more strenuous activities is not an option at this time. I can adapt to my current situation, but I am saddened by how quickly my vitality and endurance is slipping away. I see the oncologist next Thursday and hope to find out what stage I'm in and what my treatment options are. I'm positive that I can make some informed decisions that will extend the quality of my life and giving me some time to make peace with my dying and say goodbye to those who have meant so much to me throughout my life. I am grateful I have found a web site where I can learn from and share my experiences in living with a diagnosis of lung cancer. I plan on researching area support groups as I find honest sharing and articulating what's going on with me and getting feedback from others in the same situation is a comforting and life affirming experience. Thank you for allowing me the space to express myself and I look forward to learning and sharing with you on this particularly personal journey. Kind regards, John
  5. “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. Hello! My name is Michelle & I'm new to the forums. I'm the primary caregiver for my husband who is fighting Limited Stage, SCLC with Lambert-Eaton Myasthenia Syndrome (LEMS). LEMS is a very rare disease which attacks only 3% of patients with SCLC and FORTUNATELY the way he was feeling was because of the LEMS, we know now. So I can actually say, I'm thankful he is one of the 3%! The LEMS had "activated" and he was unable to physically do anything! By trade, he was a commercial electrician, so he needed to function. He was first diagnosed with SCLC January of 2015, did the chemo and radiation, used CBD oil along with dietary changes. I know our family is very fortunate he is still so willing to fight! His PET scan in Aug. 2015 was negative for cancer. The week of Thanksgiving was the next scan, which showed 2 lymph nodes lighting up...so he has started all over (no Cistplatin or radiation this time), but Taxol for his chemo drug this time. Any positive stories or info I could share with him for life after this? Or caregiver tidbits? Thanks!
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