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Found 7 results

  1. June 25th was the day. I woke up so excited it was 6 months until Christmas! Shortly thereafter my 65 year old mother called me and told me she had went to urgent care last night because she couldn't breathe and they had found a 7cm mass in her left lung. Her self diagnosed pneumonia turned out to be lung cancer. My excitement had quickly turned to shock. Will my mother even make it until Christmas? She had a persistant cough that wouldn't let up with occassional tinges of blood. I had been nagging her to go to the doctor and have them recheck her COPD. I figured she was a pack a day smoker for the majority of her life they were just blanketing the real problem. The issue was they did not think it to be lung cancer as she had just had a screening in October 2017 that was totally clear. They did a PET scan which showed cancer in her lung, breast, liver, lymph nodes, and adrenal glands. Brain scan came out clear. Liver biopsy showed it to be advance stage small cell lung cancer. Breast biopsy confirmed. Oncologist recommended a clinical trial. Without treatment prognosis was 4 months to live. My mom signed up. Unfortunately she would be unable to partake due to emergency chemo that had to be administered over labor day weekend due to a collapsed lung. She seems to be doing well for the most part but has developed a terrible cough so powerful she was puking up with brown sputum from her lungs (is this normal?) The oncologist told us her cancer is so advanced that they aren't going to bother with radiation. The plan now is to continue with Etoposide and Cisplantin chemo for 6 cycles every 21 days. She has good days and bad days. Her chief complaint is she cant sleep at night. I am not ready to let her go. It just blows my mind that 1 disease can change the lives of so many people. Don't let cancer change you, change cancer.
  2. Looking for input on Opdivo/Yervoy treatment for locally recurring SCLC or success in repeating 1st line chemo/radiation. Apologies for message length. I have been diagnosed with a local recurrence of small cell lung cancer. I was originally diagnosed with Limited Stage SCLC Oct 31 2017, had a full response to treatment (Carboplatin etoposide with concurrent Radiation) which ended January 17 2018. So it’s been about a year. My oncology team is recommending I go straight to immune therapy (Opdivo & Yervoy) I’m struggling with do I go forward with immune therapy (Opdivo and Yervoy) or given local recurrence ( ie no distant Mets ) do I push to repeat prior chemo/radiation treatment . Would want to possibly redo radiation (which may be possible) Would be interested in anyone opinion on this, experience with treatment with Opdivo/Yervoy. Also if anyone has had success with repeating original chemo/radiation treatment. The local recurrence is in right bronchus intermedius. Subcarinal lymph node 1.3 cm, 5.2 FDG update and azygos esophageal recess (1.64 cm with 4.6 FDG uptake) . Again no Mets elsewhere. Having an MRI (brain) this week.
  3. 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.
  4. 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
  5. First, let me say that I am beyond thankful and grateful for forums like this and people like you are willing to share your stories and provide feedback on your experiences! So, thank you for your openness. My father quit a 30-year-smoking streak about a year ago. Beyond this tragic bad habit, he is an otherwise incredibly healthy 60-year-old who has never been admitted to a hospital or had a surgery. In December and January, he began to experience some peripheral vision loss in his left eye and cognitive impairments that left him temporarily confused about where he was or what he was doing on multiple occasions. After a few scans, a major brain surgery, and a pathology report, we have come to learn that he has stage IV, small cell, metastatic, high grade Neuroendocrine Carcinoma. While clearly this is a lung cancer diagnosis, he had 0 symptoms that would be associated with detection of lung problems. He only had one very large tumor in the brain, which was mostly cystic, and they were able to remove about 98% of the tumor. There is also a large mass in his lung, with metastasis to some surrounding lymph nodes(LN). We have just finished the first round of appointments to set up treatment with the radiation oncologist, medical oncologist, neurosurgeon, and the various other players involved in his treatment and care. The entire medical team is at Emory in Atlanta and we feel very fortunate to have some of the best medical professionals in the country working on his case. He is set to go through 10 treatments of whole brain radiation starting next week (2/29), then following with 4-6 rounds of chemo to address the tumor in his lung and LN. The question I would like to pose is this: What are your experiences with the side effects of whole brain radiation therapy (WBRT)? My dad is a business analyst. He is very good at what he does and is highly respected by those in his field. He really enjoys working and it is a motivator for him to fight through this yucky diagnosis, but the cognitive deficits, like short term memory loss, that have been posed as potential side effects of the WBRT have him trying to push for SRS. He is super concerned with what life on the other side of WBRT looks like for him, which is totally understandable. My siblings and I (along with his doctors) feel like small cell cancer is too aggressive to mildly treat with SRS….but our dad is a ‘numbers’ guys and he is looking for quantitative data on the cognitive deficits experienced by those with a similar diagnosis who have had WBRT. We have done tons of research, but most studies are based on non-small cell and/or the combination of SRS and WBRT. In addition, his doctors have told him that it would be difficult to quantify his cognitive outcome as he is, on-average, younger and healthier than most who undergo this treatment for this diagnosis. If anyone out there can speak to the effects they have experienced from this treatment or can provide any insight to their experience with any type of brain radiation, my family and I would be very grateful for your input!!! And if there is anything that you think we could provide to any of you with a similar situation please don’t hesitate to reach out!
  6. I am going to be setting up a booth to bring awareness and raise funds for Lung Cancer at local fairs and festivals. My booth will provide information, bandies and a donation bucket. I have acquired a small list of venues to set up my booth but would like to hear from everyone on any ideas they may have on any other settings to get our message out. I live in Mobile, AL. Thank you for any suggestions.
  7. My wife of 30+ years (Alison) and I moved across the country to AZ in Sept 2015 for her work, and for me to continue recovering from another round of Pulmonary Embolisms. Nov 1, 2015 I took her to a local ER as her "sore throat" was causing making it hard to swallow. Nov 5th the massive tumors in her lungs, neck, and heart were diagnosed as small cell lung cancer. Further test showed it had spread almost everywhere except her brain. At 56 YO, and an incredible future ahead of us, we are devastated. My job now is just to make sure she's comfortable, and gets whatever she needs or wants. My issue is I cannot find a female Psychologist in the Fountain Hills \ Scottsdale area that can see her within the next FEW weeks (we want sooner than that) that also takes our insurance (Tricare West). Any leads would be appreciated.
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