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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
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Find A Cure Panel specializes in patient research for rare and serious disease and they have some current research for people and caregivers of people with Small Cell Lung Cancer (SCLC). To qualify for this research, you or your loved one with Small Cell Lung Cancer (SCLC): 1) Must have a diagnosis with Small Cell Lung Cancer (SCLC). 2) Be over 50 years old. 3) Have EXTENSIVE SCLC. Sometimes referred to as stage 3, stage 4 or metastatic SCLC. 4) Must have some experience with smoking. If you/your loved one NEVER SMOKED then you won’t qualify, unfortunately. 5) If you are a caregiver, you must be knowledgeable about your loved one’s condition and treatment. 6) If you are a caregiver who recently lost your loved one with SCLC, you can still participate if you lost your loved one in the last 12 months. It is easy to participate in. It’s one confidential and anonymous phone call with one moderator talking about your experience with Small Cell Lung Cancer (SCLC). If you are interested in participating, please contact FACP at info@findacurepanel.com and reference FACP/SCLC
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Looking for small cell lung cancer survivor who quit chemo after having started. Please email dsheehan2@aol.com -
I promised I’d update, so here goes… My treatment is over, today. I’ve had 4 sessions of chemotherapy (over 3 months), 15 consecutive days of radio therapy, and 10 days of radio therapy to the brain as a preventative measure. The chemo sessions were severe, each lasted 10+ hours. The good news: My last scan showed a two-thirds reduction in tumour size - from 9cm down to 3cm. This is a fantastic result. I was only weeks away from death before treatment. Big thanks to my consultant - she delivered. And I even kept my hair, although its very patchy and not growing. But I’m afraid that is the end of the good news… Being only 55, and otherwise in excellent health, my consultant warned me she was going to nearly kill me to extend my life. And she wasn't joking. There is absolutely no way I would have been given, or would have survived, the harsh treatment I’ve received if I’d have been older, or with other conditions. Strangely, it wasn’t the chemo that flattened me. Before cancer I’d, like everyone else, known people with cancer, and the word chemotherapy frightened me. But in all honesty, it wasn’t too bad. A few days of nausea/lethargy after each treatment, then pretty much back to normal for 2 weeks. I got used to it. But the radio therapy, oh God the radio therapy. The only way to describe it is it’s a vicious monster that creeps up on you. The first ten sessions, again, went Ok. I really began to think I was pretty much getting away with all this cancer treatment. But then during the last five days, everything changed. I’d often wondered why cancer patients lost weight. Did the cancer stop them from eating or did they loose their appetite? In fact I asked my cancer specialist about this before treatment, and she was vague in her answer. Well the answer, for me anyway, is both. I’m 6’ tall, and normally weigh 12.5 stone. Whilst not skinny, I’m slim, and have little leeway for weight loss. Well, let me tell you, I’ve lost 2+ stone in just 6 weeks and I’m still loosing it. I’m genuinely in real danger of going sub-10 stone right now, and for a guy with my height, that’s skeletal. I just can’t eat. For someone who normally loves his food, not being able, or having the slightest interest in eating, anything, is horrible. The radio therapy has burned my insides and has severely narrowed my oesophagus. The acid reflux is horrific. Swallowing anything but iced water has been like swallowing pure acid. On top of that the radio therapy took away my appetite. Add to that the drug they gave me to counter the acid reflux didn’t work. It got so bad that after 2 weeks I admitted myself into hospital as an inpatient, was put on morphine to counter the pain, and was going downhill quite fast. Drips were being talked about, I was loosing. I don’t know where on earth I found the impetus, perhaps it was the ineptitude of the junior doctors/agency nurses who seemed to do nothing except rouse me every 2 hours day and night for mundane and pointless tests, that made me decide that if I’m going to die, I’d rather do it at home without the sleep deprivation torture. So I discharged myself from hospital. Cutting a very long story short, it wasn’t the cancer specialists that came to my rescue, but a lowly GP at my local practice who I’d never met before. After hearing my plight he said ‘I’m going to prescribe these; they are the Rolls-Royce of anti-acid drugs’. Word for word I replied ‘I hope so, because I’m loosing the battle here.’ It was true, and he could see it. Well, he was right. Within days the new tablets began to work. A month later the acid reflux had all but gone. The doc was my new hero, and is on my Christmas card list. The only reason I’m not eating at the moment is because the brain radio therapy has, again, stolen my appetite. But one battle at a time. So that’s how things stand today. 50+ trips to hospital. Hundreds of hours in traffic and in waiting rooms. Pain, pain, pain. 1000+ pills popped. Scores of needles and injections. Numerous scans, measurements, fittings, meetings and consultations. And a knackered relationship, although I think she’ll forgive me eventually. I’d love to end on a positive note, but as I lie here on the same settee for about the 100th day in a row, it’s hard to think of one. I have extended life, but I curse my survival instinct, and sometimes wish I’d bowed out with dignity before all this, because life right now isn’t a life. I said in my original (first) post that I wanted my old life back. Well I now know that’s impossible. I’m not the same person, and I know I never will be. But there is one constant to be had here… I will post again, and I hope next time from a happier prospective. Thanks very much for reading.
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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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Hi all, We have a 77 year old female looking for someone to talk to who has been diagnosed with SCLC. She does not mind if the support mentor is male or female. She just needs some support and encouragement from someone with the same diagnosis. Please let me know if you are willing to offer her an ear to listen. Thank you in advance. Best Regards, Nikole Support and Advocacy Coordinator nventrca@lungevity.org
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Hi, I was diagnosed Dec 2 2015 with a 6.2cm mass on my right lung right on the stem so no surgery available. I was in chemo within about 1-1/2 weeks and radiation for 35 days straight about 40 days later. I had 4 rounds of aggressive chemo, on one week, off the next 18 or so days. A lymph node was in the mass and they found another small spot on my right lung too, limited stage 3A. I responded well to treatment and am now "in remission" but going thru brain radiation preventative because my kind of cancer likes to go there. I have done 6 of 10 days on my brain then my treatment will be done. Im scared to death. I hadnt researched anything about it before now b/c everyone said not to, its not my diagnosis but I have felt hurt and tired all weekend and decided to look. All the info was very negative and brought me way down as far as any kind of surviving for any length goes. Does anyone have GOOD positive outcomes and info on longevity with this? I hope today finds everyone feeling good and having a good day. Thanks for listening.
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It is just one of those days that I feel blue and miss my dad. I wonder how he is doing, wherever he is. I wonder if he found peace and is as they say in heaven enjoying god's grace without earthly troubles and sickness. So many days and nights I want to talk to him, let him know how I am doing and how life has been without him and somehow I still feel like he's with us and blessing us. It will almost be two years in December. It feels like he's never been gone, and I feel like he will always be looking after us wherever he is. I am grateful for the strength he gave me as everything I do now I want to make him proud. But once in awhile, I would really like to have a conversation with him and let him know that he instilled value and strength in me that made me a strong person. For that I am forever grateful and I hope he will see and be pleased and find his peace. I miss you dad.
