recce101

Bettina, that's terrific news! About your English, let me just say that you use it a lot better than millions of people who were born and raised in the USA. Then there's someone like me who doesn't understand, speak, read, or write any second language except for a few phrases here and there. Now that's REALLY sad!! Welcome to the LCSC, and please post often! Aloha, Ned

I think we have an idea who's likely to be in that 10%! Reading the rest of your post, I just have to say that I'm very, very proud of you. The world needs a lot more people of your courage and strength. Aloha, Ned

Here's my sequence: Family physician, who ordered chest x-ray then based on that set up appointment with...pulmonologist, who ordered thoracentecis and CT scan then when results were in set up appointment with...surgeon, whose role was to verify presence of cancer and determine its type. Surgeon had planned to have an oncologist begin consultations while I was still in the hospital, but we were already considering a list of recommendations from our family physician and were allowed to make the arrangements with an oncologist of our choice. Met with him a couple of weeks out of the hospital and completed various other tests/consultations while waiting out the 28 days until chemo (plus avastin) could begin. Aloha, Ned

Tracy, you deserve way better than this. I agree with Ernie -- if you have genuine friends who are wanting to help, let them! Of course you'll hear about that too, and from the same family members who are acting so unconcerned now, but you gotta do what you gotta do. As my mother used to say (when she was really mad), I'm going to tell'em how the cow eats the cabbage! Aloha, Ned

Hi, TwinMom, and welcome to the LCSC -- the best group I ever joined that nobody ever wanted to join in the first place! Many of us think of it as an extension of our own families and have formed bonds that distance can never diminish. Though you received your diagnosis only 3 days ago, I imagine you already know more about adenocarcinoma than you ever thought possible. For example, that it's the most common type of lung cancer, accounting for 30 to 35% of primary lung tumors; that it's treatable; that it's not as aggressive and fast growing as some other types; and (here's the down side) that it's frequently symptom-free until it's been around for a good long while. As you read through the symptom/diagnosis/treatment profiles below our messages, you'll notice that a great number of us with adeno were already Stage IIIB or IV at diagnosis. Finding adeno at Stage I or II often involves a stroke of luck (so to speak) and may surprise the physician as much as the patient. You may be hearing some words like "inoperable," "incurable," or "palliative" which may or may not be upsetting depending on the semantic skills of the person saying them. Please keep a few things in mind as you go through your round of appointments: (1) There have been remarkable advances very recently in lung cancer treatments, and even better treatments are in the pipeline, so what was a death sentence 10 or so years ago no longer is. (2) The prognosis statistics you may hear or read about are historic in nature and represent a large sampling of people who received a particular diagnosis at some point in the past -- they have little relevance to you (or me) looking ahead from 2007. (3) It's becoming possible to think of cancer as a chronic disease which is serious but can be managed over the long term. (4) You may feel out of control right now, but there's one thing you DO control which will be key to your success -- your attitude, which includes your expectations. Best wishes and Aloha, Ned

YES!! Aloha, Ned

SUPER!! How's the wine holding out? Aloha, Ned

Mendy! Thar went them goosebumps agin!! Happy packing and much Aloha, Ned

Hi, Gail: As you can see from my profile, our histories and situations are different but we do have the same flavor of cancer, adenocarcinoma. I started this trip already in Stage IIIB or IV, depending on who was asked, and was not a candidate for surgery. But if I were in your position, knowing what I know today and facing the same choice that you are facing, I would choose the chemo. I'll toss out a few somewhat random reasons for that choice. 1. The doctor who did your surgery thinks it's a good idea. I wonder why? Something he saw during the surgery? Something he's learned from previous cases similar to yours? A gut feeling? Or simply an abundance of caution? Even if it's just the latter, I believe that approach is MUCH better that the surgeon who comes in saying "I got it all, you don't need chemo." That's about as comforting as getting complex driving directions to an unfamiliar spot which end with "You can't miss it!" 2. Although all known traces of cancer may have been removed, there's still a chance that a few cells might be floating around in your bloodstream looking for a home. Chemo is a systemic therapy designed to zap those cells. 3. Chemo is a much more tolerable therapy now than it was a number of years ago, when most of the horror stories we've heard originated. They may have been true back then, but they're no longer true except in rare cases. While some of the more effective chemo agents would still cause serious side effects if given alone, they are now routinely preceded by other drugs specifically designed to counter the most bothersome of those side effects. So essentially, if it were me, and I was fairly healthy in most respects, I'd go in with the assumption that I'd take the chemo unless I heard something unanticipated that convinced me otherwise. Again, just my opinion. Obviously you're going to make your own decision. Best wishes and Aloha, Ned

Wow, Cheryl, this is all quite a surprise. I don't know you as well as some of the other members, since our posting paths have not crossed very often. According to the info under your photo, you joined (I guess that should be RE-joined?) about a week before I first discovered the LCSC. But if you live in Dallas and love animals, that's two big points in your favor right there! I grew up in West (a few miles north of Waco) and got my college education in Denton back when the school was called North Texas State College. From your profile I know you've had quite a battle on your hands the past few years, and from some of the above responses I gather you've been a tremendous help to others even as you dealt with your own health issues. Your strength of character made that possible. But at the same time I must admit I was taken aback (words like "insulted" and "offended" are not in my vocabulary) by statements such as "I have been tossed to the side by you members" or "I will do all of you a great favor by leaving" which appear to paint everyone with the same brush whether deserved or not. Some of the people who responded seemed to be walking on eggshells for some reason, but I won't do that. I won't do that because I believe you'll understand that what I have to say is offered with the best of intentions and with no ill feeling towards anyone and without any know-it-all illusions on my part. What I want to say is this: I firmly and intensely believe that stereotyping, painting everyone with the same brush, lumping them all together, is profoundly destructive on any number of levels -- between people, between families, between races, between nations, even between worlds if we come to that. As a counselor you may have said the same thing to others. Please consider the effect of your words and don't do it, I implore you. With my best wishes and Aloha, Ned

Joann: It's great to hear that your son is doing so well. You've certainly had your plate full for many years. I'm quite familiar with the taxol/carboplatin combination as I was on that every 3 weeks October thru January -- the profile attached to my previous post (above) goes into some detail on my side effects, but overall I tolerated it pretty well and the bad guys have shrunk. My chemo was combined with avastin, which I'm still on, now as a single-agent therapy, also every 3 weeks. My cell type is adenocarcinoma (non-small cell), for which the taxol/carbo/avastin combination followed by avastin alone has become a fairly standard treatment. I don't know anything about verdale, and couldn't find reference to it on Google (except as a variety of olive) or at all on Dr. West's site at onctalk.com. Maybe it's better known under a different name? Good luck on the clinical trial, and please keep us posted as your journey unfolds. Aloha, Ned

Hi, Aubree, and welcome to the LCSC! I'm glad you got the small versus non-small sorted out -- they're two rather different animals, and it does make a difference in the specific treatments offered. But some of the terminology is weird, I agree, and I'm still trying to get parts of it figured out. When I first heard this non-small cell thing my reaction was "tell me what I HAVE, not what I DON'T have!" Next thing you know someone will be asking you what TYPE of non-small cell -- adenocarcinoma, squamous cell carcinoma, BAC (don't remember how to spell the first part), etc., because that makes a difference too. You've already received some great advice from some of our best and brightest "been there, done that" and "am there, doing that" folks. Please post often, ask questions, and remember there is no such thing as a stupid question on these forums. The LCSC will be like an extension of your family. Best wishes and Aloha, Ned

Hi, Joann, and welcome to the LCSC! Even though you're considered Stage IV because of the spine mets, it sounds to me like you just barely qualified for that honor and there will be a number of potentially very helpful treatments available to you. When you get more information such as specific cell type (adenocarcinoma, etc.) and treatment plan (radiation if any, plus names of the chemo agents), a good place to post it would be in a chronological profile (symptoms, diagnoses, treatments, side effects, test results) like you see at the bottom of our messages. Use the "My Profile" link at the top, scroll down to "Signature," enter/update your information, and ensure "Always attach my signature" is marked "Yes." Will save you lots of time in the long run and help you get more and better answers to any questions you may have. By the way, some of us old guys have a REALLY hard time reading messages where every word is in capital letters. I've heard people object to all-caps because they say it's like SHOUTING, but that part doesn't bother me. I simply find it hard to read and tend to avoid posts and profiles in all-caps if I'm tired or pressed for time, which seems to be rather often these days. So you're in Pittsburgh! I love your city and drove up there every chance I got during my 3 years as an Air Force ROTC instructor at West Virginia University (Morgantown) a long time ago. That first view of the city coming out of the Fort Pitt Tunnel is breathtaking, to say the least! Best wishes and Aloha, Ned

Hi, Tova, and welcome to the LCSC! Yes, I've heard those words too, from my pulmonologist as well as my thoracic surgeon. They must teach that line in med school. I didn't really expect the inside of my chest to be a thing of beauty, but it would have been nice to hear something a bit more individualized and positive! To his great credit, my terrific oncologist has never said anything like that and has never offered me any of those depressing statistics which may have value for researchers or the folks who decide what Medicare will and will not pay for but are meaningless at best for the individual patient. Instead, we talk about how I've been feeling since the last visit, the specifics of my condition according to the latest scan and other info, whether we should continue with the current treatment or consider something different, things that help me feel like a partner in my own treatment together with him and my chemo nurse. After your mom finishes her initial tests, and the cell type and stage are known, and a treatment plan is in place, it should be a lot less hectic. Wishing the best for you both, with a bunch of Aloha headed your way! Ned

Hi, Rod, and welcome to the LCSC! You have a marvelous attitude, which will be a great help in getting you through this. Give us your specifics in a profile and those of us who have "been there, done that" with your particular diagnosis and treatment will be able to help you along the way. Aloha, Ned

I was never told, but looking at the criteria for the ECOG/WHO/Zubrod score, it would have to be 1 - symptomatic but completely ambulant. Still there. Some day it would be nice to have an immediate change from 1 to 5 with no intervening steps! Aloha, Ned

Hi, and welcome to the LCSC! You can read my profile below, but I'll emphasize here that for me there were no such signs. I had never coughed up blood and I still haven't. I was not short of breath until very late in the process, after our family physician had already scheduled me for a pulmonology consultation based on a chest x-ray. I had been noticing reduced stamina for about a year, but had two good explanations: For the past 12 years I'd been dealing with Meniere's Disease (an inner ear condition that destroys the hearing and balance function of one or both sides), and one of the effects is fatigue due to brain overload from trying to sort out the good signals from the bad. Second, I had recently turned 70, and since I hadn't really felt normal for a number of years, I had no baseline for comparison and just figured that Meniere's and old age were teaming up on me. When I went to our family physician for the month-long dry cough and shorter duration wheezing, lung cancer had still not entered my mind. When I picked up the film to take to the pulmonologist, I had quite a shock. The lower two-thirds or more of my right lung was invisible -- the film was completely clear, just like the unexposed margin at the edge. That part of the right chest, as I soon learned, was filled with fluid and congealed ("loculated") gunk, partially collapsing most of the right lung. Surprisingly, my oxygen saturation reading was still fine. So the x-ray was my first good indication that something was definitely wrong. It still wasn't confirmed to be cancer until an exploratory surgery a couple of weeks later, but I'm convinced that if I'd had a simple chest x-ray the year before, something would have shown up even then, giving me a better shot at an actual cure. The problem is, old-fashioned chest x-rays are not necessarily a part of periodic physical exams. When I was in the Air Force I did receive them regularly, but my last one was in 1978 when I retired from the military. My very strong advice is to see your doctor ASAP and insist on a chest x-ray. Don't be one of those who doesn't want to know, because what you don't know CAN hurt you! Aloha, Ned

Don: You'll surely be missed, but the great things you've done here and elsewhere will never fade. You've touched so many lives with your kindness and compassion. With only 24 hours a day in this human existence, it's unfortunate but inevitable that we must choose from a multitude of worthy causes. My best wishes in all your future endeavors. Aloha, Ned

WAY TO GO, RANEY!! Aloha, Ned

I've lived here 35 years and frankly have no desire to travel anywhere else -- I had enough of that in the Air Force and I'm now where I want to be. But many people who were born and raised in Hawaii do have a strong urge to get away occasionally. Do you know what the most popular getting-away site is? Las Vegas!! In addition to visiting, many from Hawaii have retired in the new developments just outside of Vegas because of lower living costs, and they've brought their cherished customs and foods along to create a sort of "little" Hawaii. Aloha, Ned

Does your dad feel the acidity in any position, or just when lying down? I can't explain the mechanism, but I've found that when I lie flat on my back (as in parts of my exercise routine) I'll often notice acidity that wasn't there before. If I pay attention, I can detect the point (almost horizontal) where it starts, as if a little acid is spilling out of the top of the stomach into the esophagus. Weird! Anyway, I have some old blankets stuffed under the head end of my mattress to keep that end elevated slightly. Of course a more intense bout of acidity will make its presence known in any position, but that's quite rare for me and is handled with a couple of fruit-flavored Tums. Aloha, Ned

I'm here, I truly am! Hi, Lilly -- great idea to take a summer break out this way. Weather in the summertime is more consistently good than at other times of the year, and the 30-foot waves like you see on TV are gone for a few months, so it's usually nice beach weather, especially for keiki (children). Every island is a bit different, and they all have their charms, but for your situation I'd vote for Oahu -- not because it's "my" island, but because there's more packed into a small space. You don't want to be driving or riding a bus every day just to get to a beach when you could have Waikiki Beach within walking distance of many, many hotels. It may not be the best beach in Hawaii or even on Oahu, but it's perfectly adequate, convenient, and safe. On the days when you want to venture forth from Waikiki, there's a lot to choose from, ranging from rather expensive to free. You can check out these websites to whet your appetite: http://www.gohawaii.com/ [Hawaii Visitors & Convention Bureau] http://www.honolulu.gov/parks/facility/ ... elcome.htm [Hanauma Bay Nature Preserve] http://www.sealifeparkhawaii.com/ [sea Life Park] http://www.hawaiianwaters.com/ [Hawaiian Waters Adventure Park] http://www.nps.gov/usar/ [uSS Arizona National Memorial] I haven't been to most of these places in years, but I still know how to use the phone, so send me a PM if I can help you with any details. Aloha, Ned

Hi, Wendykay, and welcome to the LCSC! You've definitely found the right place for support and solid information. No matter what your question or situation, there undoubtedly are people here, both patients and family members, who have "been there, done that" and are ready to lend you a hand. Most of the crew is probably asleep right now, and you'll start hearing from them in the morning, but I'm out here in Hawaii (4 hours earlier than Colorado, if I remember my time zones correctly) and am happy to be the first to welcome you. The more information you can provide the group, the more specific and helpful will be the responses you get. Any time you're able to spend writing a chronological "profile" of your father's symptoms, tests, diagnoses, treatments, side effects, etc. will be time well spent and will actually save you time in the long run. That way you don't have to give background every time you post -- just plunge into the subject at hand. To create a profile click "My Profile" at the top of the screen, scroll down to the "Signature" block, enter/expand/update your information, scroll some more and ensure "Always attach my signature" is marked "Yes," then "Submit." You asked about the hip pain. Obviously your dad's medical team is in the best position to determine its cause, and if they say it's not related to the cancer, then I'd accept that. A few days ago several of us were discussing the various aches and pains that everyone gets from time to time, and how those of us with cancer immediately worry that any new discomfort is caused by the cancer metastacizing to somewhere else in the body. Sometimes these fears get rather far-fetched and even humorous -- you probably haven't done much laughing recently, but you'll soon find that laughter is an essential stress reliever. If you have any questions about using the site, or anything else for that matter, please ask. I believe you'll start to think of this community as part of your family, as most of us have. Best wishes and Aloha, Ned

A couple of messages back I said I'd check with my onc about the Avastin + ibuprofen question, so I did, just before going into the chemo room for today's 3-week refresher. His answer: in my case, no problem. Standard label dose is fine. NSAIDs could be an issue if membranes are already damaged (from surgery, etc.) since healing is being retarded by the Avastin to begin with, a situation more likely to occur in colon cancer than in lung cancer. There's probably not any clear right-or-wrong here. Some docs may be recommending the no-ibuprofen restriction from an abundance of caution growing out of a bad outcome earlier in their career. Anyway, that's my input on the question. I wonder if a new thread is in order... Aloha, Ned

Well, how about this -- I wasn't told to avoid either one on Avastin! Looking at my notes, I see the nurse practitioner who was giving me the chemo orientation before my Taxol/Carbo/Avastin program recommended Tylenol for pain. I asked if ibuprofen was okay as it worked better for me, and she gave an unequivocal "yes." I thought Dr. West's post was going to straighten this out for me, then realized he was talking about Tarceva, not Avastin. This discussion thread started out with Tarceva as the focus, then it morphed to Avastin, and now I think it's back more or less to Tarceva. My next onc appointment and Avastin infusion is tomorrow (Tuesday), so that's my goal too. We may find that even oncologists don't agree on this question. Aloha, Ned