annieli Posted November 10, 2022 Share Posted November 10, 2022 Hello, My mom is currently in the hospital due to SVC syndrome, and was recently diagnosed Stage 3A NSCLC, SCC. The doctors are discussing chemotheray and radiation since they say that her tumor is non-operable. it's (8cm x 4cm). They say the tumor hasnt metastasized, and has not spread to any lymph nodes. However, it's around the arteries (that's why her SVC is causing her issues). The doctors are doing testing for biomarkers, but they discussing doing chemo/radiation before the results fully come out, which me and my mom both agree with. They plan to do carboplatin paclitaxel for chemotherapy. I asked about immunotherapy and they said that was only an option if the tumor metastasized. I was wondering if anyone had any similiar experiences, or suggests on what I should be asking her doctors. Thank you, Annie LouT 1 Quote Link to comment Share on other sites More sharing options...
Rower Michelle Posted November 10, 2022 Share Posted November 10, 2022 Hi Annie, Welcome here. I would suggest getting a second opinion as soon as possible. While it’s rare for SCC to have biomarkers it can occur. Chemo/Radiation is the standard of care AND so is at least one year of immunotherapy. To suggest otherwise contradicts the NCCN guidelines which establishes the treatment plans for all cancers including lung. Lung cancers in the never smoker population are complicated and really need an expert opinion. Personally you’re not far from John Heymach MD at MD Anderson’s and I would suggest you reach out to the Go2Foundation and Lungevity Help Lines to line up a second and perhaps a third opinion. Getting the treatment plan right out of the gate is really important. Keep us posted…. We’re here to help! Michelle LilyMir, BridgetO and LouT 3 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted November 10, 2022 Share Posted November 10, 2022 Hi Annie, So sorry to hear of your mom’s diagnosis. Lung cancer so often involves waiting, and the waiting can be agonizing. Are they doing blood or tissue testing for biomarkers? Perhaps both? If she hasn’t started treatment yet, and her current condition doesn’t demand immediate action, I’d encourage you to wait for those results. The lung cancer researchers I’ve listened to this year stress the importance of biomarkers in crafting the best course of treatment. For example, some newer treatment options for certain biomarkers appear to provoke quicker responses than more traditional treatments. Also, has her case been discussed at a tumor board? That’s a panel of docs across the spectrum of specialties related to lung cancer. They are a way to ensure an individual case is viewed through many perspectives and that a consensus for treatment has occurred. Hang in, and keep us posted. Karen LouT and BridgetO 2 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted November 10, 2022 Share Posted November 10, 2022 Annie, Your mom and I share a diagnosis. Mine was a single very large tumor (NSCLC, SCC) that completely filled the main stem bronchus of my right lung. I had pre-surgical chemo radiation (30 fractional sessions with weekly Taxol and Carboplatin). I experienced a problem with suture healing after surgery that negated post surgical chemotherapy. Three tumors were discovered in my left lung and Taxol and Carboplatin was the only chemotherapy available. While chemo knocked back tumors, they kept recurring, Finally the FDA approved Cyber Knife technology for solid lung tumors. This new method eliminated a particularly troublesome reoccuring tumor. Diagnosed in February 2004, I've been NED (no evidence of disease) since March 2007. My treatment history suggests 2 points: chemo radiation works and if I can live, so can your mother. Immunotherapy is a game changer. Here is a link about immunotherapy. What should you be asking doctors? I'd inquire about the possibility of a biopsy to check for PD-L1 expression in your mom's tumor. It may be possible to have a minimally invasive needle biopsy. Certain levels of PD-L1 predict how well immunotherapy works in treating your mom's cancer. Welcome here. You'll likely have more questions and this is the place for answers. Stay the course. Tom LouT 1 Quote Link to comment Share on other sites More sharing options...
annieli Posted November 10, 2022 Author Share Posted November 10, 2022 Thank you for your responses! I live in Austin, but my mom lives in California. I will see if I can get a second opinion from UCLA. They will be testing for biomarkers, but the thought process was to start Chemo and Radiation first (because her SVC syndrome is pretty bad), and change the treatment if the biomarkers were present. My mom actually had to have a surgery biospy after a needle biospy resulted in a false negative, which is how she got her diagnosis. I will definitely ask again about immunotherapy again if she shows a high PD-L1 expression level in the tumor. What i was really hoping for was chemo, sbrt (radiation/cyberknife?) and immunotherpy as her treatment, but maybe when I talked to the oncologist it might have been premature to say immunotherapies were an option because they didn't have the biomaker testing done yet. But I will push for immunotherapy if there is PD-L1 expression.. Why wait till chemo has failed, when you can throw the kitchen sink at it to kill it.. Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted November 12, 2022 Share Posted November 12, 2022 My oncologist threw the kitchen sink at my Stage IIIB adenocarcinoma: I had 6x chemo (carboplatin and taxol) and 30x radiation, like Tom, before starting targeted therapy for my EGFR-mutated NSCLC. Immunotherapy wasn't an option for me. I just had my 3-year cancerversary and am NED. Best wishes to your mom. Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
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