recce101

Yes, it's the roller coaster effect. You're strapped into this thing, you can't get off, it won't stop, you can't see the track ahead, and when it's going up and everybody else is laughing all you can do is brace yourself for the next time it starts down, and you don't know when that will be since you can't see the track ahead, but when you feel your stomach and heart in your throat and all the dirt is coming up from the floor you know you're heading down, and while everybody else is screaming on the downslope you know there are bound to be better times ahead, but you can't even enjoy that because you know that before you can head back up you're going to be ground into the floor with the weight of the world crashing down on your shoulders, and you don't know when that will be... Nope, kaneohegirl, no horrible persons anywhere in view around here. What you expressed is what most, if not practically all, caregivers have felt deep inside. It's just that most have never had the courage to acknowledge those feelings. I've never said it before, but I had the same feelings when my dad was in the hospital (though not from cancer). I knew down deep that he would never come out of there alive, and that as an outdoor, vibrant person all his life he was miserable being cooped up in there with no realistic hope of improvement, so I secretly welcomed setbacks as long as they weren't causing him pain. Some might be shocked reading this, but probably very few in this group. Aloha, Ned

I was going to answer back and say that didn't sound right, since if it's for anxiety, it would be giving a calming effect or depressing the nervous system, which you don't want to do if you already have depression. But what do I know, so I googled it and came across this in MedicineNet.com: And this: Okay, so it can make you sedated and feel depressed, and if you take it too long and stop suddenly you can become agitated and worse. But then look at this: Doesn't that take the cake! You're depressed, and you get worried and anxious about that, so you take Ativan for the anxiety, knowing that a side effect is depression. That's too much for my feeble chemo brain to comprehend, and the rest of my half-used bottle just went into the trash. Aloha, Ned

Adrian and/or Leslie: I went over to onctalk.com to see what I could find on the subject, then saw your detailed post there and Dr. West's answer. The Ativan part sort of jumped out at me. Is your dad still having nausea, i.e., in the last few days? If not, maybe he should back off from the Ativan as a first step, or (as Dr. West suggested) try something else for nausea. A number of people have had some rather strange side effects from Ativan (search the posts here for examples). I think it's largely intended for anxiety and, as such, helps with nausea too for some people. But I haven't noticed you mention anxiety as a problem, mainly fatigue and even depression, so I'm thinking Ativan is not a good choice and is just pushing him further across the fatigue line. When I first started chemo I was given a prescription for Ativan and was told to take it a few days after each infusion whether I felt nauseous or not, but after a couple of cycles with no nausea I mentioned that maybe I didn't need to keep taking it. So I stopped and the partially used bottle is still on the shelf. Come to think about it, though some of my side effects were at their worst in the later cycles, I only had that gray curtain, gotta-sleep-right-now fatigue during cycles 1 and 2. I wonder if it was the Ativan, which I really didn't need at all? Aloha, Ned

Hi, Linda, welcome from the "other" Ned. I asked my friend Sam Google, and he said in this context NAD probably means "no abnormality detected." So on your CT scan, your head apparently looked okay, or "clear" as some would say. Just for fun I looked up NED in TheFreeDictionary, and for that it listed "no evidence of disease" as Missy said, but also "nuclear event detector" and "non educated delinquent." Maybe I shouldn't have looked it up... Aloha, Ned

Hi, and welcome to the LCSC! We have a number of members here who themselves have (or whose loved ones have) NSCLC Squamous IIIB or IV and are doing very well on their treatments. It's a lazy Sunday morning, but some of them should be responding to you soon if they haven't already, as I'm typing rather slowly in between pancake bites. In the meantime you might want to poke around the site using the SEARCH function or browsing through some of the message threads on the NSCLC & MESOTHELIOMA forum. Be sure to read the chronological profiles at the bottom of the messages, which can be very enlightening. A few comments. First, no doctor can know that, and if he actually said that, I wouldn't place much weight on ANYTHING that doctor said. But, in all fairness to the onc, and hopefully without offending the person who relayed that item, let me just say there's every reason to believe the doctor was misunderstood. Many doctors, unless very specifically asked, will avoid any mention of x-number of months or years because those are simply averages (or means or medians) involving a large number of patients and they know many patients (or family members) are likely to "latch on" to any such number and believe it applies directly to them. Here's a case in point: The quote was from Dr. West, who sometimes contributes comments here but does most of his online work at his own website, onctalk.com. He is on the staff of a large cancer center in Seattle, is an acknowledged expert on lung cancer, and -- amazingly -- finds time to directly and quickly answer questions from patients and family members without stepping on the toes of their regular oncologists. You can read the entire discussion thread about "discussing prognosis" here: http://onctalk.com/2007/05/29/discussin ... -oncology/ Best wishes and Aloha, Ned

Dr. West has some information about that on his website. Here's one item and discussion (there are probably others): http://onctalk.com/2007/01/17/duration- ... ng-cancer/ Much of that reference deals with NSCLC, but Dr. West points out that the guidelines (still informal) generally apply to SCLC too. With each successive cycle of chemo, the effectiveness against the cancer tends to decrease, but the toxic effect on normal tissues tends to build. At some point the chemo starts to do more harm than good, and that's generally 4 to 6 cycles for most patients. When that happens the body needs a break. Wishing you guys the best and sending lots of Aloha your way, Ned

Yes, that happened to me a couple of times until I got the onc's staff "trained." This consisted of calling the day before my appointment to confirm the time, then saying I had such-and-such a scan x-days ago and the doctor will be wanting to have the results before I see him tomorrow, so could you please check. If things begin to slip I'll start doing that again. Aloha, Ned

Hi, Raney: We never like to hear about mets, but you've handled bone mets before, and they (plus brain mets) seem to be a rather common and very treatable development for those of us in the Adeno Club. I haven't had either one "yet," but since I expect to be living with adeno for a good long while, I'll very likely get one or both sometime in the future. If and when it happens, I plan to take it in stride just as you have. The best to you and a big Aloha, Ned

Thanks for the update. Beautiful country up that way! Aloha, Ned

Well, I got choked up as I read it, still am, and I'm not ashamed to admit it. My emotions have been close to the surface ever since I was diagnosed last September, but it's not about me or self-pity or anger or fear or anything like that. It's just that I've been incredibly touched by the thoughtfulness and compassion and goodness that's been welling up around our family the past several months, things I sort of hoped were out there somewhere but had never seen to that degree, things I hadn't motivated myself to provide others to any extent in years gone by. Maybe I'll have a chance to make amends in some small way. Aloha, Ned

Hi, and welcome to the LCSC! The fact that your mom is in good health (except for the cancer) will be a big plus as she begins treatment. Those who are able to tolerate the chemo (and radiation if applicable) without requiring a treatment break to recover from infection, dehydration, and a host of other potential problems seem to have the best chance for a successful outcome. Another factor is attitude and expectations. I believe you're okay there too and I hope your mom has a similar outlook. I don't sense any panic or despair, just mainly shock, which is certainly understandable and which the majority of us also experienced at the beginning. Some years ago a NSCLC Stage IV diagnosis was practically a death sentence, but in 2007 it no longer is -- many new treatments are available, and others are in the pipeline. If the first chemo combination doesn't work or stops working, there are others to bring on line. To help us provide the most appropriate advice and information, you should start a profile of symptoms, diagnoses, treatments ongoing or planned, test results, et cetera on behalf of your mom. There are several different types of lung cancer, and the characteristics and treatment vary from one to the other. Click "My Profile" at the top, scroll down to "Signature," enter/update your information, and be sure "Always attach my signature" is marked "Yes." Best wishes and Aloha, Ned

Hi, Lilie, and welcome to the LCSC! I was distressed to hear about your husband and what value he apparently placed on his marriage vows, but I'm very glad you've moved past that and I'm delighted that you're doing so well. Around here your status is also called "NED" [no evidence of disease] and after I joined it took some time to get accustomed to seeing my nickname used so frequently throughout the forums. But it was always associated with happy thoughts, and it was a pleasant adjustment. We can all benefit from your experience and perspective. Looking forward to reading your profile -- click "My Profile" at the top, scroll down to "Signature," enter/update your information, and make sure "Always attach my signature" is marked "Yes." Best wishes and Aloha, Ned

Hi, kaneohegirl: I believe Missy and Welthy pretty much answered your questions, but if you want any more details on why 4 to 6 cycles of taxol/carbo is about the limit, here's a good discussion on Dr. West's website: http://onctalk.com/2007/01/17/duration- ... ng-cancer/ After first-line treatment is complete, what happens next depends on what the latest scans show along with the general condition of the patient after getting off the "hard" stuff. Some go directly into second-line treatment, while others take a break from chemo to recover some strength. A lucky few might be told their cancer is nowhere in sight and are scheduled for periodic scans to check for recurrence. My best wishes and Aloha, Ned

Hey, Aaron, ABSOLUTELY SUPERB! We knew you'd make it if that panel had any common sense at all, and they did. Sometimes good things DO happen to the good guys. Aloha, Ned

Hi! I see your question was answered a couple of days ago, but as the "other" Ned I'd like to add my welcome to those you've already received. When I joined the group and posted my first message well before dawn Hawaii time on Sep. 10 of last year, I was equally in the dark about the acronym. But as I read through the responses (which were prompt and plentiful) this comment really touched me: That was from Maryanne, who also responded to your post. Never doubt the importance of a great first impression!! Aloha, Ned

Hi, Sonja, and welcome to the LCSC! Yes, your story is all too familiar to those of us battling lung cancer or helping to care for someone who is. It's wonderful that you're committed to helping in some way. There's much to be done, not just funding research, but also increasing public awareness and knowledge, which is a number of years out of date and causes many of us all sorts of problems. I imagine most of the people who bounce in and out of here throughout the day (and make a special point of welcoming new members) are sawing logs about now. It's still your yesterday out here in the middle of the Pacific, but I'll be turning in too very soon so I can get up early enough to have my one cup of coffee for the day and still have the required 4-hour fast before my 9:30 CT scan. My best regards and Aloha, Ned

Those days when everything clicks into place are all too rare, but aren't they nice! Aloha, Ned

Hi, kaneohegirl, absolutely you are doing the right thing. I read your letter (posted on your livejournal.com blog) and it helps to clarify the situation. If your mother reads it with an open mind, she should understand. If she doesn't, then that's her loss, not yours. Your Hawaii roots are intact, and to you "ohana" means responsibility, not party time. [Note to others: Ohana means family and has a special significance to many here, not just native Hawaiians. That feeling was probably common on the mainland some years ago, but a lot of it has been lost since people move around so much these days. In Hawaii, "moving" is more likely to mean to a new home 10 miles away rather than to another state.] Aloha, Ned

Hi, HeartOfGold (I just had to spell it out), and a hearty welcome to the LCSC! Do you have a twin sister or maybe some clones floating around? There are a few more out here who need someone with your devotion and stability. Fortunately I'm not one of them, as my wife is as much of a jewel as you are. I fully agree with everything that's been said so far, so instead of echoing that I'll try to touch on a couple of other points. Of course a lot of our suggestions right now have to be generic, since you didn't mention your boyfriend's age, state of health (other than lung cancer), whether he's experiencing any bothersome symptoms now, etc. And when you see the medical and radiation oncologists and can give us details on his diagnosis, additional tests scheduled, and plan of treatment, we'll have lots more to offer. People react to a cancer diagnosis in different and sometimes unpredictable ways. Some take it in stride, some are devastated, and most are somewhere in between. Some like to talk about it with friends, their doctors, or even casual acquaintances who show an interest, believing it's therapeutic to get it out into the open. Others don't like to talk about it at all, even if they're not in denial, and it becomes necessary for the spouse or companion to take the lead on research and communicating with the doctors and their staffs. If he turns out to be that type, you can encourage him to open up, but don't count on it happening -- just love him, faults and all, as you've learned to do for the past 7 years (and vice versa, I would imagine ). Another individual personality trait might become an issue after his treatment starts. I haven't had radiation, so I'll just limit this comment to chemotherapy, about which I know more than I ever wanted to know. Chemo, along with fighting the cancer, also takes a toll on normal body tissues, to a lesser or greater degree depending on the specific drug and the general health and genetic makeup of the patient. As one example, some of the drugs greatly retard healing, as a byproduct of interfering with the formation of new tissue, which is how they attack the cancer. At the same time, the body's ability to fight infection is compromised because the same mechanism interferes with the formation of white blood cells which do the infection fighting. You can see where this leads. To prevent a serious infection, which could interrupt the chemo schedule and even land the patient in the hospital, it's necessary to take exceptional precautions to avoid cuts and scrapes, and to quickly treat and cover those that do occur. This is not easy for the typical macho male. But the period when one is on a chemo regimen is not the time to be stoic. Even a little hypochondria can be a good thing. I felt silly showing my oncologist the blister on my foot that had opened, or the place where my port incision had become irritated and red, but he took these "little" things very seriously and I was put on a course of oral antibiotics three separate times during the four months when I was on the "hard" chemo. But it paid off, as I never had an interruption in treatment. So those are a couple of things to add to your list. And tell your boyfriend to not worry about this little cancer thing, he's an incredibly lucky guy! Best wishes and Aloha, Ned

Leslie and Adrian: Does your dad say exactly WHY he's not eating and drinking? Doesn't feel like it? Isn't hungry? Tastes bad? Makes him nauseous? Too painful? If it's one of the first 4 reasons or something similar, I can't really add to the list of things you're already doing or that have been suggested. If it's because it's unacceptably painful to chew or swallow, then that's a little different and IV fluids/nutrients or a temporary stomach tube, also mentioned above, might be the best (or only) solution. There's a good chance your dad's oncologist may bring this up if the weight loss continues, not as a threat, but as a temporary solution to a temporary but very real problem. Of course your dad is the final say on this, and there might be a psychological hurdle to clear, especially with the feeding tube idea. That term tends to bring up unpleasant images of semi-comatose long-term care patients being fed through a nasogastric (NG) tube, prisoners on a hunger strike being force fed, or worse. But a gastrostomy (G) tube placed directly into the stomach can be taped to the skin when not in use and concealed under clothing when one is out and about. I don't know that much about it, but enough to know I wouldn't hesitate to have one myself if I was temporarily unable to eat or drink normally because of surgery or radiation. Hoping for better days ahead. Aloha, Ned

Well said, and I agree completely!! Best wishes and Aloha, Ned

Hi, and welcome to the LCSC! The answer to your question is a resounding YES! Adenocarcinoma is the most common form of lung cancer, accounting for some 30-35% of primary lung tumors. Being so common, it's also very well studied, and a number of effective treatments exist for it. In most cases, adenocarcinoma doesn't grow and spread as rapidly as some other types of lung cancer. The "down" side you've already discovered -- there tend to be few if any symptoms until it's been around a good while (several months or more) and has had ample opportunity to spread elsewhere. If you look through the messages here, especially the profiles at the bottom, you'll see that a large number of members who have adeno were already Stage IIIB or IV when first diagnosed. But, many of us in that group (that includes me, as you can see below) are doing pretty well. I echo what Christine said about starting with the NSCLC, Good News, and Survivors forums. Read-read-read, take notes, Google terms that aren't familiar, then come back here and ask questions. There are no dumb questions, and there are lots of people here with first-hand experience as patients or caregivers who will be glad to lend a hand. Also, you can help us help you by creating a symptom/diagnosis/treatment profile on behalf of your mom with lots of details. Click "My Profile" at the top, scroll down to "Signature," enter/update your information, and ensure that "Always include my signature" is marked "Yes." If you're pressed for time right now, you can start with just the basic facts, then fill in the details when you can. My best to you and your mom, and a warm Aloha, Ned

I know it's a relief to finally get started on the chemo. My first taxol/carbo/avastin session was done in 2 days also -- some sort of lab delay -- but all the others were in just one (long) day. That cough sounds like the pits. Throat gets sore and there's no end in sight. My cough was what led me to go to our family doctor in the first place. I don't really understand the mechanism that caused it, but it improved considerably after I got the fluid drained and hasn't been a problem since. But your dad's cough may be something different if he didn't have a pleural effusion and shortness of breath. Give him my best! Aloha, Ned

What a diff’rence a day makes, Twenty-four little hours... My head is still spinning after reading through all this. Amazing! So happy for your mom -- and you! Aloha, Ned

You should've -- I would've!! CONGRATULATIONS!!! Aloha, Ned