recce101

Hi, Kg! Looks like you've got things under control, as any Kaneohe girl would. The fact that you're living somewhere else now doesn't change that a bit! [For those who don't know, Ka-ne-o-he is a town on the windward (northeast) side of Oahu. There's a Marine Corps base there by the same name.] You should put some of that great narrative into a chronological "profile" of symptoms, diagnoses, treatments, test results, etc. so you won't have to repeat the background every time you post. Click "My Profile" 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. Welcome, best wishes, and a big Aloha from out this way!! Ned

Good question, one which I don't recall seeing before. But I'll still make a stab at an answer! This gets into semantics, but to me "denial" is when someone refuses to recognize that a problem exists, or to recognize that an existing problem is a serious one. I don't think there's any danger of you falling into that trap. To be strong is to face a problem head-on, acknowledging the difficulties ahead, but confident that you and your team have the wherewithal to win. If you get behind, redouble your efforts and regain the momentum. There are obvious parallels with a well coached athletic team that gets some bad breaks for a while but never gives up and eventually becomes the victor. Here's a little mental technique that I find helps me, or at least I think it does. I don't know how valid or accurate it is biologically, and if I'm found wrong I'll replace it with something else, but here it is: Cancer is not something foreign that's invaded my body. It's not like a flu bug or snake bite. It's some of my own cells which, for one reason or another, stopped behaving according to the rules and, for one reason or another, were not adequately curtailed by the body's natural defenses. We need to eliminate those wayward cells (which should have died a natural death anyway before now), then strengthen the body's defense mechanisms to better deal with that sort of thing in the future. Hoping the CT/PET results give you more clarity about what you're facing and the best course of treatment. Aloha, Ned

A couple of months ago, when I was still totally bald, I was returning to the oncology clinic waiting room from their lab when through the entrance on the other side of the room walked a GORGEOUS young lady who also happened to be completely bald with no hat, scarf, or other typical head covering. A real knockout for sure. As if drawn by an invisible magnet I walked over and sat down next to her (my wife was chatting with someone at the time, but even if she hadn't been occupied, I don't think I would have been deterred). I came up with something brilliant like "why do you look so much better than me?" and she said "oh, it must be the lipstick." We had a good laugh over that and talked for a while, then all too soon the receptionist called her over to give her the records she'd come for and she departed with a wave. We did talk long enough for me to learn that she was a leukemia patient and was heading to the mainland for a bone marrow transplant, but that's about the extent of our short conversation. Anything more than that I wouldn't have known what to do with anyway, right? But I must admit that the encounter did stir my imagination in various directions for a few days. I'll leave it at that before Kasey activates her delete finger again. Welcome to the LCSC, Sherry! Can we look forward to a photo soon? Aloha, Ned

Hi, Leslie -- good question, good answers! You've probably read my profile before, so I'll try not to repeat much of that or what others have said so well. For the Taxol/Carboplatin/Avastin combo my IV premeds were Benadryl, Aloxi, and Decadron. The day following chemo I went back for a Neulasta injection. This was my general pattern for all 6 of those cycles: The Benadryl was toward the beginning of the all-day session, and it's the only thing that ever gave me any sort of effect during the infusion itself. Our head chemo nurse is a terrific gal (originally from Canada) who's been doing this kind of work for 20 years, and she's seen it all. My first day she said "Okay, Ned, this is the Benadryl -- you'll get drowsy and slur your words." I kind of shrugged it off, and she asked me some small-talk question that required an audible response, and we both cracked up. The rest of the room got a kick out of it, as they'd been newbies too not long ago. Some used the Benadryl as a prelude to a nice long nap, but I tried to shake it off as soon as possible so I could get to my reading or the portable DVD player that my son had surprised me with. Some drowsiness persisted through the rest of the day and evening. The next day I always felt great and arrived back at the chemo clinic for my Neulasta injection in fine spirits. That evening the Decadron wore off as the Neulasta was taking effect and it was "good night" without question by 10pm. The third and fourth days were usually the worst for fatigue and muscle aches but ideal for some serious napping. Toward the end of the first week my energy level started to improve and the various weird side effects would make their presence known in a somewhat random manner. By the end of the third week I was feeling much better, but then it was time for the next fun day at the clinic. I had been advised not to eat acid foods such as pineapple on infusion day since that added to some patients' nausea, but I found that restriction to be unnecessary. I never had the slightest tendency toward nausea, and I adopted the chemo patient's mantra "eat what you want when you want." The chemo was continuous throughout the day, but we were free to move around within the general area. The IV pump gadgets are on rolling stands and have battery backup, so there is no problem unplugging from the wall and going to the restroom or walking over to chat with someone. I found the restroom trips to be rather frequent because there's lots of saline solution accompanying the drugs and, well, I'm at that age... Some of the chemo clinics here have taken great care to make their infusion room a cheerful, pleasant place, and I hope yours is similar. Though I'm afraid you won't have our view -- corner suite, wrap-around windows, panoramic view of Central Oahu and the Waianae Mountains to the right, Pearl Harbor to the left. Aloha, Ned

So you're the OTHER one Kasey was talking about a day or two ago. Welcome to the LCSC, Kathy! There's an amazing amount of solid information and personal support here. No matter what your question, there's bound to be someone who's "been there done that" to give you a first-hand perspective. And please do take the time to write a reasonably detailed profile. If you're sort of busy right now, start with a sketchy one, then fill in the details later. It will save you time in the long run. Whenever you want to post a new question or comment, there's no need for a lot of background -- just plunge into the subject at hand. To create a profile click on "My Profile" at the top, scroll down to "Signature," enter/update your information, ensure that "Always attach my signature" is marked "Yes," and click "Submit." If you want to include a photo, you can do that with the Avatar feature. Best wishes and Aloha, Ned

Congrats!! How's the neuropathy? Aloha, Ned

Hi, Leslie and Adrian -- a big welcome to the LCSC! Let's see if I can give you some perspective. I'm four years older than your dad, quit smoking 43 years ago (compared to your dad's 33), healthy lifestyle including regular exercise. Pretty even so far. I was diagnosed IIIB NSCLC (maybe IV depending who is asked), same cell type (adenocarcinoma, one of the more common, better studied, more treatable types). I had two separate nodules in the right middle lobe, one of which was resected during an exploratory thoracotomy (not actually for curative purposes, but if some was to be taken for biopsy, it made sense to try to take it all if possible). There was also direct invasion into the chest wall, mets in the parietal (outer) pleura, and a real mess (pleural effusion/hydropneumothorax, loculated fluid, not responsive to pleurodesis) in the lower half to two-thirds of the right lung. You dad has nodules in three lobes (I gather from your writeup that these are in the same lung, which must mean it's the right lung, since most people have only two lobes on the left slde because of the heart). You don't mention a pleural effusion or cancer cells in the pleural fluid, so I'm assuming and hoping there is none. I'm not sure who's ahead now, but I have a feeling it's not me. Mets to the brain, bone, other organs? Your dad hasn't had all his tests yet; mine were negative, but that was back in September. So I'll mark down "unknown, probably not" for both of us. Planned treatment? Appears to be identical to mine (see my profile below). The taxol/carboplatin/avastin combo is quite common for adenocarcinoma -- my onc says it's one of his favorite treatments and he's had a number of patients do very well on it. It's proved beneficial for me, and now that I'm on the avastin-only part of the program with essentially no side effects, I'm feeling really good again. I'm also encouraged by the fact that if and when the avastin stops working (as it most likely will at some point) there are other approved drugs such as alimta and tarceva that I can move to, and even better treatments are in the pipeline. My expectation is that I can keep this thing beat back and have a good life until I'm old enough to die of something else. Your dad can do just as well and probably better -- he doesn't have a major surgery to recover from before starting chemo, and as I read your post he hasn't lost a large part of his lung function as I had (and most of my loss is probably unrecoverable). I sincerely hope my general tone hasn't seemed cavalier. It's certainly not my intent to minimize the seriousness of your dad's condition or the shock you're all adjusting to right now. Keeping things a bit on the light side helps me to maintain a positive attitude and not obsess over cancer or some other problem in my life. If I took a turn for the worse I'd probably still talk the same way. You'll hear lots from this community about positive attitude and expectations, and it's true, regardless of one's religious, spiritual, metaphysical, or other beliefs. My very best wishes and Aloha, Ned

Wonderful! The best to both of you. Aloha, Ned

Hey, Jimbo, Howzit!! I was wondering when somebody else from Hawaii was going to show up here. We do have a reputation as one of the healthier states, but... Our profiles have some similarities but also some differences, as you can see. From your message I gather you're on one of the neighbor islands? I live in Central Oahu, just under 20 miles from Honolulu, but it does seem like a different world down there. I've had most of my tests and the one hospitalization at Pali Momi, next to the Pearlridge Center, and my oncologist's clinic is in the Bank of Hawaii building next to Pearlridge. Boy, I know what you mean about the peripheral neuropathy -- that hit me rather suddenly at the beginning of my 6th taxol/carbo/avastin cycle, not in the hands so much but definitely in the feet. My wife dug up an old walker that her father had used years ago, and that's the way I got around for a while -- tried to swing through the air and avoid touching the floor as much as possible. I tracked down my onc at his Queens office and he called in a prescription for Neurontin, which did the trick within a couple of days even at minimum dosage (one 100 mg capsule a day), much to my relief and amazement. Now I just get a tinge of it in the evening, when it's been almost 24 hours since the last capsule. When I see him next week I might ask about adding one during the daytime as well. Send me a PM if you like. Welcome to the LCSC and Aloha, Ned

As you might guess, I'm another vote for keeping Capullo!! Aloha, Ned

Hi, and welcome to the LCSC! Most of us don't use that word, not because we're trying to sugar-coat a life-threatening condition, but because it means such different things to different people. In a manner of speaking, aren't we all terminal at birth? No one can say that with certainty. At a very minimum, "may" should be substituted for "will." I think of it as "living with cancer" and managing it as any other serious chronic disease -- or "dying with cancer but not from it." Good for you! Such prognoses are more than meaningless to any individual patient. They're supposed to represent the average survival time of a large group of people who received the same diagnosis, so of necessity they're based on historical data -- and this 6 months stuff sounds to me like rather OLD historical data. But even if you were told a year, 18 months, or whatever, that's still an average and not relevant to you or me as individuals. No one can reasonably say that you or I "have" or have been "given" x-number of years or months. It just doesn't make sense. See, now you've got me started!! Please keep us posted. I think you've done very well so far! Aloha, Ned

THREE CHEERS (at least!) for your dad and tarceva -- an unsurpassed combination!! Aloha, Ned

Jan, that's TERRIFIC! Enjoy every day!! Aloha, Ned

WAY TO GO, HEATHER!! Aloha, Ned

TERRIFIC, Jamie -- good reason to keep smiling!! Aloha, Ned

Hi, Jen, and welcome to the LCSC! I too migrated from another site. While the content there was good and the people were helpful (a number of them are here too), the mechanics of how the site was put together simply didn't match up to the near-real-time responsiveness of lchelp.org. The LCSC "profile" feature is especially useful. It's really great that your mom has done so well. She'll be an inspiration to others who come here thinking Stage IIIB is close to hopeless. How times have changed! When you do the profile, try to give some details about the post-surgery pain your mom is having (where, when, etc.), also her difficulties adjusting to life with one lung. There are plenty of folks here who have "been there, done that" and they'll probably have some good tips to offer. Best wishes and Aloha, Ned

Hi, Loretta: When you see your onc tomorrow you might ask him for a referral to a good dermatologist. During the latter part of my taxol/carbo/avastin combo therapy I developed a red, scaly, itchy rash on my legs which greatly interfered with sleep. I tried all the remedies you listed and more, all without success. My onc had previously suggested a specific dermatologist for another condition, coincidentally the same doctor I'd been seeing for years to follow up on a skin cancer problem 10 years ago. He quickly recognized it as a relatively severe outbreak of stasis dermatitis, which I'd had in mild form for several years. It was not a side effect of the chemo as I'd assumed, but a pre-existing condition that had become much worse because of the reduced circulation and lowered resistance brought on by the chemo. He presecibed a strong steroid ointment, which immediately stopped the itching and gave me the first good night's sleep in days. Within 2 weeks I was back to the previous mild form of the skin disorder. Because your husband's itching extends to the back and stomach, I doubt if it's the same condition I had (have), but it could be some other recognizable skin problem not caused by the chemo but allowed to become worse because of it. I hope it gets resolved quickly. Aloha, Ned

Dr. West has a good number of items about alimta on his onctalk.com website. You might start with this one: http://onctalk.com/?p=274 Aloha, Ned

Dear Flowergirlie: The fact that in the midst of your grief you're reaching out to help others speaks tons about your strength of character and compassion. It's therapeutic for you as well. Any other thoughts I could offer, pewjumper has already said, and better. I just hope it's not too painful for you to continue displaying that beautiful photo of you and your dear husband in happier days. I feel a warm, loving glow every time I view it. My fondest Aloha, Ned

Sometimes it FEELS like we're giving...giving...gone!! Aloha, Ned

Well, Lynne, don't let it! It makes him feel useful to know he's contributing to your recovery. Tell him how much you appreciate his help, and he'll want to do even more. Years from now, you'll both look back on this as a time that truly strengthened your relationship. It's GREAT to hear that you're doing so well! Aloha, Ned

Hi, Graham, and welcome to the LCSC. It's the best group I ever joined that nobody ever wanted to join in the first place. You'll find the responses fast and plentiful, based on first-hand experiences of lung cancer patients and family members. As you've already heard from Ernie (and perhaps others before I finish this), we need more details about your wife's condition before anyone can make other than very general suggestions -- a chronology of symptoms, diagnoses, tests, treatments, results, side effects, etc. It may take some time to put it together, but it will not only help us help you, but may also let you see patterns that you may have overlooked. To create a profile, click on "My Profile" at the top of the screen, scroll down to "Signature," enter/update your information, ensure that "Always attach my signature" is marked "Yes," and click "Submit." It can be rather sketchy at first, then you can include more details when you have time. Also, if you like, you can include a photo using the Avatar feature. As a general comment, we don't often use the word "terminal" around here -- not because we want to sugar-coat anything, but because it means such different things to different people. You'll find some interesting discussions on this using the LCSC search feature. Click on "Search" at the top, put "terminal" in the first box, change "Display results as" to "Posts," change "Return first" to "All available," and click "Search." Please post often and ask anything that comes to mind. There are no dumb questions. My best wishes and Aloha, Ned

Well, that's certainly a relief. You won't be seeing any can-you-top-this contributions from this corner! Aloha, Ned

Debi, I probably wasn't supposed to read this, but who cares -- it was very entertaining. You obviously have a bright future as a fiction writer. That WAS fiction, wasn't it? Please tell me it was!! I just hope you're not into candling... Aloha, Ned

Ernie, that's terrific! Will this be mainly on corporate aircraft? I know the beneficiaries of this great program will love your stories!! Aloha, Ned