CMilo Posted January 17, 2009 Share Posted January 17, 2009 So many questions, I have no idea where to start. I have been pouring over posts for hours now over 2 days, just now joined. I have smiled and cried while wandering through these halls. I'm am sure to be posting more as my fathers diagnoses *Dx* (ha! learned one!!) is new - 23 December, yes - quite the merry Christmas around here... And I am utterly clueless... I have been searching, but can't seem to find a thread that defines all the common acronyms used here. Oh, yea - I finally figured out was NED was too. At first I thought he was just a popular guy around here. Humor, not always good humor is my coping mechanism, please bear with me. Any direction is greatly appreciated. Candy Quote Link to comment Share on other sites More sharing options...
SandraL Posted January 17, 2009 Share Posted January 17, 2009 Hi Candy. So sorry about your need to be here. Yes, the language can be a bit overwhelming at first be we all eventually get most of it. We are here for support and information so please ask away and give us more information on your dad and how he is doing. Sandra Quote Link to comment Share on other sites More sharing options...
RandyW Posted January 17, 2009 Share Posted January 17, 2009 I am not sure such a thread or sticky exists but we are always available for questions!!! N E D = No Evidence of Disease and thats one of our faves!!!!! Sorry you hae to be here but glad that you are cause we really are a great bunch of people around here.... Quote Link to comment Share on other sites More sharing options...
recce101 Posted January 17, 2009 Share Posted January 17, 2009 Hi, Candy. There's a Glossary which contains a lot of acronyms in addition to other glossary-type information — see the link in the left column. And like Randy said, any that you don't find you can post here and someone will answer. Aloha from "the other" Ned. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted January 17, 2009 Share Posted January 17, 2009 Candy, Sorry about Christmas but humor, good or bad, appears to be the coping mechanism for many of us here. We appreciate it. Congratulations on figuring out NED. It really took me awhile on that one. As Randy points out, you can just ask. Duh, why didn't I think of that. This is not a happy trip but it's most difficult in the beginning. Most of us walk around in an anxiety riddled fog for awhile. What you could focus on right now is that many of us are survivors of advanced (stage 3 and 4) lung cancer. Donnna G and Connie always come to mind. They are both survivors over twelve years. We are a site full of hope and you can read some of the more hopeful stories to your dad if he needs encouragement. Just keep asking and asking whatever questions come to mind. There are no silly or dumb question in this game. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Bruce u Posted January 17, 2009 Share Posted January 17, 2009 Hi Candy Welcome to this great site. I'm sure if you ask a question here someone will have the answer for you. Quote Link to comment Share on other sites More sharing options...
CMilo Posted January 17, 2009 Author Share Posted January 17, 2009 Wow, thank you for the quick and warm replies. To be honest, I really don't know a heck of a lot. He has stage 3A-4 Adenocarcinoma (NSCLC). The call after all the test results came in on the 23rd of December, dad was in the hospital on the 26th for surgery. They installed a port and poked around a bit... our final determination of what he has. He started chemo and radiation on the 12th of January. 6 chemo sessions 21 day break then another 6. Radiation the whole time (photon). At that time they will determine if the treatments reduced the 2 tumors and then they might do surgery to remove the affected sites. To me? Why didn't they yank the buggars out when they were there the 1st time? Opinions vary as to why... Most of the people we've encountered have been wonderful & helpful. Before this is over I may end up smacking some 'high n mighty' surgeon onto his rear... but that's another topic altogether... The chemo he's getting is Cisplatin & Etoposide. 2 names I didn't see while reading here. So far (5 treatments, 1 6 hour one) dad has had no side-effects, other than a increased appetite... I've never seen him eat so much!! Initially they had him on 20 mg of Decadron but since he's had no ill effects they are dropping him to 10 mg. I don't know if any of this I'm saying is even pertinent. I take notes and try to figure out what in the world is going on, but holy cow... so much info. Oh, and might I mention I have found out LC is the most underfunded. I'm all for savin the TaTa's, being all cute n bouncy n stuff - but come on!! LC is the deadliest of all the cancers and it's the least funded. THIS I plan on making my own personal venture to correct (no matter how trival my contributions..) Please, ask questions for me to answer or to ask. I'm so lost. (and scared) Quote Link to comment Share on other sites More sharing options...
recce101 Posted January 17, 2009 Share Posted January 17, 2009 Hi again, Candy. You're a quick study, and you'll be a great advocate for your dad. LCSC excels at answering questions from the perspective of a patient or someone caring for or otherwise supporting a patient, but for more detailed medical questions (like why not surgery before chemo/radiation, or why a particular chemo combination), may I suggest that you visit cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). The site has a wealth of information, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted January 17, 2009 Share Posted January 17, 2009 Hello Candy and welcome.. Here is a short list of some of the common abbreviations you may find here.. this is from an earlier post in the Introduction forum from our Muriel. I'm in a hurry, but here's a quick list of some of them: Dx or dx diagnosis Tx or tx treatment B-I-l, M-I-L, F-I-L, S-I-L, Brother, mother, father, or sister in-law SO significant other DH dear hubby ( I think) Onc oncologist. Might also find an abbreviations for pulmonologist PCP primary care physician I will add, SOB is shortness of breath I'm sorry you've had the need to find a site like this but I am glad you've joined us! Please keep us posted and let us know how we can help! Warmly Christine Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted January 17, 2009 Share Posted January 17, 2009 I've just skimmed through the site quickly this morning and compiled a list of commonly used acronymns. I posted it as a "sticky" in the INTRODUCE YOURSELF forum. Hopefully, since I am sure I missed more than a few of the abbreviations used on here, members will post additional information on that thread. ~Christine Quote Link to comment Share on other sites More sharing options...
jaminkw Posted January 17, 2009 Share Posted January 17, 2009 Candy, Glad our Ned (a popular fellow not to be confused with NED altho we never give up hoping for that, any of us) gave you the info on cancergrace.org. He steered me there early on and it was a godsend. Whenever anxiety got too high in the early days, I'd pop in there and ask questions. Even if the answers weren't alway easy to hear, Dr West has a way of deliverying them that makes it easier to digest. Christine did a good job in giving you a briefing on some of the abbreviations used here. I could have used that early on as I was a little embarrased about looking dumb. What to ask, hummmm? Your dad's adenocarcinoma (non-small cell, slower growing than small cell) stage 3a-4 and has two tumors. You might want to know the sizes or locations of the tumors. Is there lymph node involvement. It's been awhile since I looked at a staging outline so I don't know if the "a" tells you any of this or not. But Candy, the questions and answers are ONLY to help members here and people on cancergrace.com to help you understand what's going on and share known treatments for a comparable cancer, side-effects of the treatments and other supportive info. I think for all of us in the beginning, you might really be looking for bottom line prognosis. As someone with advanced lung cancer, I can tell you you don't want to believe the statistics on this. But as most of us here have already learned, they are just numbers. Your dad is a person who falls somewhere on a long continuum and could as easily be on the positive end as the negative. Now I'm getting wordy. Good luck to your dad and your family. Judy in Key West Quote Link to comment Share on other sites More sharing options...
CMilo Posted January 17, 2009 Author Share Posted January 17, 2009 You are all amazing - thank you for your well thought out, warm responses. Truth is - I don't know if we want to know his prognosis, none of us has asked. He has said he doesn't want to know. I see it from both sides. 1 - who wants to live with a ticking bomb saying, ok - on such n such date... that's it. No one obviously. I don't think I would, and I know having that alarm clock on my dad would only add to my panic. On the other side, there are nuts n bolts to consider. Issues to be addressed, unpleasant ones. Dealing with them almost makes it 'seem' like someone has given up, but from my point of view I don't think so... oh well... I will head over to the other site ( I think I found it once before when I 1st got the news) later today. It's all so scary and for unchartered. I can barely pronounce (and in some cases flat out can't) some of the stuff going on with him right now between Dx ( ) , treatments, meds etc, etc.... I suppose at this point I'm looking not only for information but some clarity. I too am sorry I had to find this place, but I am very happy that I did now that I had to. Did that come out right?? ** Oh almost forgot. Maybe this will make sense to some of you. This is taken directly from his pathology report. Microscopic examination: Sections demonstrated an enlarged lymph node with the lymphoid elements being largely replaced by nests and islands of malignant epithelial cells. the epithelial cells are relatively large and in some areas the nests show lumen formation consistant with glandular differentiation. Immunohistochemical stains for cyyokeratin AE1/AE3, cytokeratin 7 and TTF-1 are strongly positive in the tumor cell population. Stains for cytokeratin 20 are negative. There are 2 tumors 1.6 & 1.8 cm in the upper portion of his left lung. MRI negative on brain scan (which in this case is a GOOD thing!!). Also, little side bar. Yea, another one... Dads surgeon said his cancer was caused by Radon exposure... though I'm sure his smoking *which he finally quit* didn't help. Quote Link to comment Share on other sites More sharing options...
Ellen in PA Posted January 17, 2009 Share Posted January 17, 2009 Hi CMilo. Welcome to our world. I see you've been 'shown around the place' and given all kinds of good advice. I have just one question: Who or what are the 'Ta-Tas'? Thanks. Ellen Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted January 17, 2009 Share Posted January 17, 2009 Ellen Ta~Ta's are boobies... another organization that deals with breast cancer, savethetatas.com Warmly Christine Quote Link to comment Share on other sites More sharing options...
recce101 Posted January 17, 2009 Share Posted January 17, 2009 ELLEN ! Quote Link to comment Share on other sites More sharing options...
RandyW Posted January 17, 2009 Share Posted January 17, 2009 coolest and funniest T shirt says, "Save The Ta-Tas!!" I am a research person by nature so sometimes if Ya need something I may know where it is here! I also can share this! If a doctor tells You that you ahve this much time left..... START LAUGHING REALLY HARD My theory was always, Remember yesterday, Cherish Today, and Pray for tomorrow!! EVERY DAY You do this Live laugh the way you want to and then you are not letting the cancer win. IF YA run around and think doom and Gloom then You ahve lost before you already started. ANd THATS NOT GOOD!!!!!!! Have fun, Dance when everyone is looking, LAugh in the grocery store. But Never think you are losing this fight because someone says you will eventually lose it. Sorry if I am on a rant but some know this is a hard time of year for me! Your doing awesome. Write down every wuestion you can think of and take it to the doctors visits! Knowledge is power. The Oncologist has a lot mor Patients than you have family members with cancer so advocate and advocate LOUDLY! One voice is a whisper and A thousand voices are deafening!!!!!!! Pray outside at night. Talk to god every night and let out your frustration, Joy, frustratioin, Whatever you are thinking but LET IT OUT! Take care of yourself in order to take care of others tha you are fighting for!! Prayers and Hugs and thats my wisdom for the day !!So Git ER Done, Live laugh and Love and have a blessed day every day!!!!!! Quote Link to comment Share on other sites More sharing options...
Ellen in PA Posted January 18, 2009 Share Posted January 18, 2009 Hi folks. Wow, never heard the term 'ta-ta' before (except as baby-talk for 'thanks'). Ya learn something new everyday! Thanks, folks. Ellen Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.