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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!
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!