Greg Drevs Posted October 24, 2006 Share Posted October 24, 2006 Hi All. I am a newbie, I was just diagnosed with large cell neuroendocrine lung cancer (LCNE) seven weeks ago. They removed the lung lobe that contained the stage 1B 4 cm tumor. They also took 13 lymph nodes which came back as negative. Problem is they tell me that large cell neuroendocrine is a very agressive and deadly cell type so they are recomending adjunct chemo therapy. I have tried to research LCNE on the Internet but there isn't much out there published on it since it was only identified in the late 90's and added to the World Health Organization list in 2004. If anyone in the Lungevity support group has LCNE, or has any knowledge about this cell type I would appreciate your feedback. Quote Link to comment Share on other sites More sharing options...
Ry Posted October 24, 2006 Share Posted October 24, 2006 Welcome to the site. My MIL was also diagnosed as having large cell. That was the first I had heard of it. I also went on the net searching. She is doing quite well--she had radiation only due to her age. You are very lucky your cancer was found early. I wish you well-- what is the chemo they want to use? Rochelle Quote Link to comment Share on other sites More sharing options...
RandyW Posted October 24, 2006 Share Posted October 24, 2006 Try the Following Links! General Info: http://jtcs.ctsnetjournals.org/cgi/cont ... /130/1/166 Clinical trials by state. This may help I do not know which State you are in though?? http://www.centerwatch.com/patient/studies/cat34.html $ trials which are currently recruiting. http://www.clinicaltrials.gov/ct/search ... mit=Search These are experimental treatments with Chemo drugs that have been used before. The combos may be different though. Try this Link for more info May find something here. ASCO is highly respected and most oncologists ae members I believe; http://www.asco.org/portal/site/ASCO/me ... ractID=978 That should help for now I think. this is a ton of info tocomb through aand I have done some combing already. Knowledge is power, and the more you know the better the questions to ask Drs. Sending prayers and keep us posted. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted October 24, 2006 Share Posted October 24, 2006 Hi Greg, My friend's sister has neuroendocrine lc. She is being treated with a monthly pill of some kind. That is all I know. Her cancer was advanced when discovered, however, according to my friend, it was a slower-growing cancer. Cindi o'h Quote Link to comment Share on other sites More sharing options...
Kasey Posted October 24, 2006 Share Posted October 24, 2006 The following was posted by one of our members ~ Meredith. Not usre if this applies to your case or not. Posted: Wed Jun 21, 2006 3:47 pm Maybe you have already heard of this place at Cedars-Sinai in Southern California? It's the Carcinoid and Neuroendocrine Tumor Center It's for rare neuroendocrine tumors and they specialize in treating them. They may have much more information on current treatments and/or clinical trials. Posted: Wed Jun 21, 2006 3:58 pm By the way, here is the link. http://www.csmc.edu/4085.html Good luck. And also a big welcome to you as well. Kasey Quote Link to comment Share on other sites More sharing options...
ernrol Posted October 24, 2006 Share Posted October 24, 2006 Welcome, I don't know much about large cell, but I am sure you will get some good info from others. If you have not had a second opinion, you may want to get one. Maybe from someplace like MD Anderson or Sloan Kettering. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
john Posted October 24, 2006 Share Posted October 24, 2006 Hi, I know some about this. It is what my mom had. There are 4 types of neuroendocrine lung tumors. They are on a spectrum of aggressiveness. SCLC is a neuroendocrine lung cancer. Next aggressive is the large cell neuroendocrine carcinoma. Next agressive is atypical carcinoid. Then carcinoid which is the least aggressive. 1) SCLC 2) LCNEC 3) atypical carcinoid 4) carcinoid Somatostatin analogs are sometimes used to treat the ones that are not SCLC. LCNEC is alot like SCLC and chemos like CPT-11 AKA Camptosar or Ironotecan, cisplatin and VP-16 AKA Etoposide (Etopophos or Vepeisid) are used. At least that is what one of the oncs told my mom. Sometimes, but not often an Octreotide scan may be done. It uses the somatostatin receptors to detect the cancer. Also there are new targeted radiotherapy that uses the Somatostatin receptors. There was one posted on this site. I will post it once I find the link Google LCNEC, somatostatin Quote Link to comment Share on other sites More sharing options...
john Posted October 24, 2006 Share Posted October 24, 2006 Yttrium (90Y) and 177 Lutetium (177Lu), were coupled to somatostatin analogs in treatment. The article said that 90Y may be better for larger tumors and 177LU possibly for micrometastasis. As someone mentioned it is really good that you are early stage. Quote Link to comment Share on other sites More sharing options...
Connie B Posted October 24, 2006 Share Posted October 24, 2006 Dear Greg. I am sorry you had to need to find us, but I am glad to see you did. I just wanted to share with you that I have a friend and a member of my Inperson Lung Cancer Support Group who also has Large Cell LC and she had surgery and she also underwent chemo and radiation both, and that was 7 years ago. She's still with us and doing just great!!! Her cancer had spread to her eye and that's how they found out she had cancer 7 years ago. Good luck to you. Quote Link to comment Share on other sites More sharing options...
Patkid Posted October 24, 2006 Share Posted October 24, 2006 My husband had Non Small Cell Lung Cancer w/ Neuroendocrine Features. He had wonderful reduction in his tumors w/ Cisplatin and VP 16. I will add you to my prayer concerns. Pat Quote Link to comment Share on other sites More sharing options...
michelepal Posted October 25, 2006 Share Posted October 25, 2006 Welcome! I will keep you in my prayers... (((HUGS))) Loe, Michele Quote Link to comment Share on other sites More sharing options...
Greg Drevs Posted October 25, 2006 Author Share Posted October 25, 2006 Thanks so much to you all of you for your replies with LCNE information and your support. I met with my oncologist yesterday and found out what chemo therapy treatment they are recomending for me. Four(cycles)with each cycle having four weekly treatments. The first two weeks of each cycle I receive a treatement of both Cisplatin and Navelbine; on weeks three and four of the cycle I receive just the Navelbine. I start next Tuesday (Halloween) and am scheduled to end on my birthday Tuesday February 13th.I know Cisplatin is a pretty common treatment but don't know anything about Navelbine except what I have read on ChemoCare.com. Any insights,successs stories, or even experience with side effects (yes I know everyone is different)would be appreciated. Regards - Quote Link to comment Share on other sites More sharing options...
Ry Posted October 25, 2006 Share Posted October 25, 2006 Most members that have had Navelbine have reported it is pretty tolerable with few side effects. Good luck. Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted October 25, 2006 Share Posted October 25, 2006 I was on Navelbine, had good results and is very easy to tolerate. It's a quick one. They push it through, takes about 5 minutes or so. Quote Link to comment Share on other sites More sharing options...
Muriel Posted October 25, 2006 Share Posted October 25, 2006 Quick tip. The nursing staff will tell you to drink lots of water. There is no way you could drink too much. It's really important to drink water while on cisplatin. Good luck. Muriel Quote Link to comment Share on other sites More sharing options...
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