recce101

Hi, welcome to the group! It seems that hardly a week goes by that I don't read a post on this board from someone whose cancer recurred a year or two after a surgeon announced "I got it all, you don't need chemo." True, chemo is no picnic, and some people really are cured after an early stage surgery, but current technology does not enable us to know who is and who isn't with certainty. If I were in that position (I'm not, since mine was caught too late), I'd be inclined to push for post-surgery ("adjuvant") chemo if there was any disagreement at all between my surgeon, pulmonologist, and oncologist on the issue. But that's just my opinion, not an established standard of care. Whenever I hear the phrase "I got it all," I'm reminded of the times I've been driving in an unfamiliar city, asked for directions, and got a complex series of instructions ending with "you can't miss it!" Aloha, Ned

Julia: The only thing I would add is to put every word of the above in bold capital letters with lots of hugs surrounding all. Bless you! Aloha, Ned

Hi! I suggest you go to onctalk.com and enter "tarceva" in the search box. You'll get several screens full of links to OncTalk posts on Tarceva, plus many questions with answers from Dr. West. If you like, you can register and ask a question yourself. Aloha, Ned

Good deal, Max. We'll be looking for your post-surgery report! Aloha, Ned

Hey, Mitchell, that's wonderful news -- have a great Thanksgiving! Aloha, Ned

Maggi, sending you a PM (Private Message). Click "My Mail" at the top. Aloha, Ned

Another example of the many things a good social worker on the hospital staff can accomplish. The essence of their job is to KNOW THE SYSTEM and help people navigate it, regardless of their financial status. Aloha, Ned

Hi, Jeannie. I understand what your husband is saying, since I had (and to a lesser extent again have) the same problem. Actually, I consider it to be three separate problems, with two or three separate solutions: 1. Doesn't taste good. Right, taste buds are fried. Some tastes come through, others are non-existent. This can be overcome with willpower, and from your other comments I'd say your husband has plenty of that, so let's look further for a problem and solution. 2. Texture. Some foods greatly irritate the mouth, tongue, esophagus, all the way through. Can range from unpleasant to downright painful. Minimize or avoid the worst of these, and increase portions of those that actually feel good going down. Frustrating for you, since the "black list" changes from time to time. But frustrating for hubby too. 3. Stomach feels full. My stomach simply will not accept the amount of food I used to eat at one sitting. Trying to force it is useless or worse. Add snacks between meals, give smaller portions during meals. And supplement with Carnation Instant Breakfast, Ensure, its Wal-Mart clones, whatever. For most people, it takes more calories to maintain weight than before cancer came on the scene. Best wishes to both of you with my Aloha, Ned

Hi, Maggi, welcome! I like the radiation onc's answer. A little bit of explanation really helps, doesn't it? And thanks to Connie B for her eagle eye! Aloha, Ned

Ken: Dr. West's website onctalk.com has a post on complementary/alternative medicine and supplements by a naturopathic physician at the same cancer institute: http://onctalk.com/2007/08/08/cam-intro-by-dr-labriola/ According to Dr. West, "People should feel free to submit questions to Dr. Labriola in the Q&A forum here [onctalk.com]. Just start a new thread and put it in the folder labeled “Naturopathic Medicines and Supplements” on the pull-down menu. He’ll check in and will try to provide the best information he can." Aloha, Ned

Hi, welcome to the LCSC -- hoping for good news from that scan! It will help us give you more useful answers and also save you some repetitive typing if you'll start a profile of diagnoses, treatments, side effects, test results, etc. like you see below most of our messages. Here's how: Click on My Profile above, scroll down to the Signature block, enter/update your information, scroll down further, ensure Always attach my signature is marked Yes, and click Submit at the very bottom. Best wishes and Aloha, Ned

Hi, Christine, welcome to the group! We're all in a place where age and stage form no barriers, and we all learn from each other. Give us more details on your condition and treatment when you have a chance. Aloha, Ned

Welcome, Lorie! I second/third the recommendations to check out onctalk.com. You'll recognize a number of us there, as most of us use the same usernames as here. Aloha, Ned

Max, any place you are will be golden! You are and will remain ahead of the curve. Here's a description of my thoracotomy -- not nearly as bad as I'd been led to believe: http://onctalk.com/bbPress/topic.php?id=460&replies=3 Aloha, Ned

That's great news! As far as statistics are concerned, I think half the people on the planet are fully aware of my disgust when I read of doctors quoting such statistics without being very specifically asked and without any caveats, or "giving" someone x-number of months. The gall! But I've posted enough on that subject here and at onctalk.com, and I don't want to get started again. I agree, your mom is awesome! Aloha, Ned

Hi, Ken: Fourteen months ago, when I was in about the same situation as you (ready to begin chemo), I wrote a rather long post about my reaction to the cancer diagnosis and the uncertainties that lay ahead. I was rather surprised at my reaction initially, but after a while came to see it as a logical consequence of the views I've been gradually adopting over the years. You might find parts of it interesting: http://lchelp.org/l_community/viewtopic ... highlight= If you want to discuss any of these ideas, please send me a PM. Best wishes and Aloha, Ned

Connie, the surgeon sounds very thorough and I'm sure you'll be fine. Let us know the date and time, and we'll be there cheering you on! Aloha, Ned

Hi, Leslie: Probably the first step is to try and understand WHAT it is about going back to work that's making you so anxious. The only thing in my own experience that comes close was when my first marriage fell apart nearly 40 years ago. Very few people knew that we were having problems, and I dreaded returning to work not because of the job itself, but because I didn't want to keep rehashing the story when someone I hadn't seen for a while asked "how's [wife's name]?" Even worse was when I went on a trip and ran into a friend, actually a former roommate, who had been in our wedding 9 years earlier. He wanted me to come over to his place for dinner, but I made some lame excuse and sort of brushed him off. At the time I didn't really care what he thought -- I just didn't want to tell him about or discuss the pending divorce because the edges were too raw. I can't say I did anything to "cope" -- but I did sort of operate on autopilot for a long time, dealing with my job intellectually with no enthusiasm or drive since my emotional well had run dry. It was like I was wearing blinders, focusing only on the tasks straight ahead that I absolutely had to do. What I really wanted to do was go to a place where no one knew me and start over from scratch. So, two very different situations, and yours had a satisfying conclusion, but maybe you'll see some parallels. My best to you. Aloha, Ned

Ken: Mine is the double chamber type, about 1-1/2 by 1 inches, located about 6 inches below the top of my shoulder, and the skin is raised slightly (maybe 3/16 inch) compared to the surrounding area. It's not visible under any of my shirts, and I no longer enter wet T-shirt contests. There was slight soreness in the shoulder for a week, not much more than I have with the annual flu shot. For the implantation, I asked for local anesthesia instead of general, and there was no hesitation by the surgeon or anesthesiologist. Took about 15 minutes, and since there was no recovery to do in the recovery room, the only delay there was waiting for the guy with the portable x-ray machine to verify placement. It's the way to go! Aloha, Ned

I think that's the basic reason. Most of us respond quickly and with great generosity when a friend or relative suddenly encouters a family emergency or health crisis, but when it appears that they're doing "okay" we tend to turn our attention to the next thing or person in need. We never seem to have the time or resources to meet every need we see and have to set priorities, often imperfectly. Now the people who make definite promises and don't follow through, or can't accept that someone on chemo can't take care of their sick child even when it's been explained to them -- they're in a different category entirely and I won't go there at all. A complicating factor is that we tend to put our best face on for others, possibly with the exception of immediate family. There are many motivations for this -- our realization that others with far worse infirmities than ours are active and even cheerful, our desire to appear strong and worthy of respect, our need to be a positive example for others just starting on this path, the knowledge that positive expectations and a good attitude are themselves therapeutic, and many others, all valid and commendable. So if we're in the "good face" stage, what can we do? [This is generic, not custom designed for Patti B or me or anyone else.] (1) One thing, difficult for many, is to be assertive and clear about what we can and cannot (meaning "will and will not") do. Friends will graciously accept your explanation, and those who resist can be crossed off your list of friends, at least for now. (2) Try to repay, somehow, to some degree, those who were most supportive in the early weeks. Do something within your capabilities, something a bit original, something that shows you've been thinking of them. (3) Don't wait for others to call, make the call. Express an interest in the other person, ask how they and their family have been doing. When the conversation gets around to you, be candid about your condition, your side effects, what may be next in store for you, in a matter-of-fact way without dwelling on it and without displaying a hint of self-pity. Some people will truly be blown away by this! As you're talking they'll think about their own problems, realize yours are much worse but that you're handling them well, and the proverbial light bulb will go off. Well, the Tarceva Kid has to make his one sun-baked outing for the day, this one to Wal-Mart. Aloha, Ned

Carol -- good show, super, so happy for you!! Aloha, The Other Ned

Will someone (perhaps you) being going to the various tests and other appointments with your dad? The first few weeks are very hectic, there are a lot of unfamiliar terms being thrown about, and it's easy to misunderstand something that was said. A second set of ears and an extra hand to take notes and jot down questions that come to mind would be a great help and IN NO WAY a reflection on the mental competence of your dad or any other patient. Your oncologist went to school for years on this stuff, he knows the jargon, he does this kind of work every day, and look at how many people he has to help keep track of all the details. Shouldn't your dad, who's doing this for the first time, have at least a staff of one? Now would be a good time to scroll back up to bunny's post and read it again -- she has it exactly right. My best wishes and Aloha, Ned

Note to all: Jasmine has a more detailed post in the NSCLC forum. I responded there. Aloha, Ned

Hi, Jasmine, welcome to the LCSC! I would find this sort of runaround unacceptable, and it appears that you do too. If this is the best your local area has to offer, your dad really needs to get to a comprehensive cancer center, where all necessary services are under one roof, the docs are on the same page, and things move quickly. After a treatment plan has been determined, it's possible to get the actual treatments (chemo or radiation) closer to home under the supervision of an oncologist at the center. Since I'm stuck out here in the middle of the Pacific (not complaining!) I'm not very familiar with the centers on the mainland. But when the folks over there wake up, you should get some good info. If you can post your location, you might get some specific recommendations based on members' first-hand experience. I know it's a hassle to make a change, but it's still early, and treatment hasn't started yet. A number of our members credit the fact that they're still alive to their determination to seek a second, third, or even fourth opinion. You may hear from some of them too. My best wishes and Aloha, Ned

That sounds like a good plan. Maybe you could switch to another onc at MD Anderson, one who is more aggressive and positive. Your local onc could probably help you with that -- there's a good chance he knows many of the docs at Anderson and their general approaches to oncology. If the local doc seems open and responsive to your preferences, perhaps he could be given more authority to make treatment decisions in coordination with someone at Anderson, if that's where you would still want to have surgery. I haven't been through the doctor-changing exercise myself, but I imagine there are all sorts of hybrid arrangements that can be made. You seem to be handling this very intelligently, so I probably don't need to tell you this, but it never hurts to...Keep in mind that these guys work for you, not the other way around. Aloha, Ned