recce101

Hi again, Mary. You must have seen that word in my profile before I updated it, which I just now did. If I'm not mistaken, you can credit the coining of "scanxiety" to Adrian, who joined the group several months ago on behalf of his dad. I guess it's possible that someone else in another part of the world has come up with that word too, but that only proves that great minds can create similar innovations even when separated by many miles with no knowledge of one another. Aloha from Ned P.S. Adrian, would you like my PayPal ID?

Hi, Mary, welcome from another IIIB adenocarcinoma. But I prefer to be called Ned, since that's been my nickname for most of my life and it's also the acronym for those wonderful words "no evidence of disease" that people love to hear. I'm not there yet, but maybe someday. This group will become part of your family. My best wishes and Aloha, Ned

Of course not, and I agree with the points in your "rant." I have a specific local group in mind who could benefit from the comparison as I've structured it, if I can find some convincing numbers to put in that don't mix apples, oranges, tomatoes, and zucchini. But it might be about time to modify my approach. Aloha, Ned

With Breast Cancer Awareness Month almost upon us, I'm looking for some statistics from a reputable source to broaden a few horizons in a nonconfrontational way and maybe reduce some of the stigma attached to lung cancer. Something like this: In 2006 [or some other period such as "over the last 5 years"], [xxxx] women died from breast cancer. During that same period, [xxxx] women WHO HAD NEVER SMOKED died from lung cancer. Anyone have any data like that? I'm assuming the lung cancer number will be higher, since we're talking about deaths and not just new diagnoses. If I'm wrong, maybe someone has another way to phrase it that would be just as compelling. In either case, I think it's essential to have a credible source so people can verify the statement for themselves. Aloha from Ned

Hey, Nick, when I saw your subject -- before I opened your message -- I figured you were wondering if your mom had a hand in getting the website back up and running. Well, maybe she did that too, and I don't think I'm a wackadoo either! Aloha from Ned

Wow -- that IS scary! Sounds like an ideal question for Dr. West at onctalk.com -- you should get a pretty fast answer from him. Aloha, Ned

Hi, Heather: Yes, I'd call the doc. You might have been taken off the Decadron faster than your body can handle. They might want to put you on a low dose for a while, then taper down from that. I haven't had radiation or an extended experience with Decadron, but that's what I've heard from others. The sensitive ears I do know something about, since (unrelated to cancer) I've had Meniere's syndrome since 1994. The sudden disabling attacks of vertigo and nausea are finally under control with medication, but the damage to hearing, primarily in the left ear, will be permanent. The hearing loss in that ear is somewhere between "severe" and "profound," but at the same time it's very sensitive to noise, or more accurately, to sound pressure waves. I carry a couple of foam earplugs in my pocket (you can get a dozen for a dollar or two) and stick one in my bad ear anytime I'm in a noisy environment -- helps a lot. If it's REALLY noisy, like a loud movie or screeching kids or a large gathering, I put one in my good ear also. It cuts out the bothersome noise and sound waves, but (surprisingly) allows normal conversation to come through nicely. I doubt if this problem will be permanent for you, but you might want to try the earplugs for now. Aloha, Ned

Hi, Christine: It seems that fatigue is the most common side effect of Taxol/Carboplatin -- just about everyone gets it starting around 2 days after infusion, and things start to get better after another 2-3 days. The fatigue would probably start earlier except for the steroid (usually Decadron) given by mouth or by IV shortly before the Taxol. That's why your dad was hungry after the treatment, and he might feel "up" for part of today also, until the Decadron wears off. In addition to Decadron, my IV premeds included Benadryl (anti-allergy, which always gave me the drowsies for a few hours) and Aloxi (anti-nausea). I also got a prescription for Ativan and was told to take one before bedtime the first 2 nights after infusion, but since I didn't have any nausea or anxiety I quit taking them after a couple of cycles -- some people have reported very strange side effects from Ativan (Lorazepam). Heather answered your question on why weekly chemo instead of every 3 weeks. The side effects other than fatigue vary considerably from one person to the next. My profile below describes what I experienced, and some of them are fairly common, but most people don't have as much trouble with the foot rash and blisters as I did. That was a bummer, since it deterred me from walking when I otherwise felt like walking. I didn't try to tough it out since a broken blister would have been an infection risk, and that's a biggie for someone on chemo. Sounds like your dad is doing fine so far. Aloha, Ned

But if you capitalize only the "N" it's my nickname -- actually, a shortened version of my last name. Welcome to the LCSC! Please give us more details on your mom's situation in a "profile" of symptoms, diagnoses, treatments, test results, etc., like you see at the bottom of our messages. Click on "My Profile," scroll down to "Signature," enter/update your information, scroll down further, ensure that "Always attach my signature" is marked "Yes," and click "Submit" at the very bottom. This will save you a LOT of typing in the future -- no need to repeat all the background every time you post -- just plunge into the subject at hand. Best wishes and Aloha, Ned

Hi, Debbie, welcome to the LCSC! You did fine with your post, and you plus your mom are going to be a tremendous help to your dad. One thing that will save you a lot of typing in the future is to create a "profile" of your dad's symptoms, diagnosis, treatments, test results, etc., like you see at the bottom of our messages. Here's how to do that: Click "My Profile" at the top, scroll down to "Signature," enter/update your information in the box, scroll down further, ensure "Always attach my signature" is marked "Yes," then click "Submit" at the very bottom. Best wishes and Aloha, Ned

Rachel: I saw your post -- and the always captivating photo of you and your two youngsters -- yesterday, before anyone had responded. Since there was still a half hour before I needed to help the wife with dinner, I figured that was ample time to share a bit of the sunny disposition and positive outlook I've been spouting off about in recent days. So, Step 1, put myself in your position... Step 1 was as far as I got. Not only did I see myself at those same Boy Scout meetings, I was also flooded with the uncertainties of the other members less than half my age who are dealing with a diagnosis similar to mine and who, in many cases, have already needed to discontinue first-line treatment in search of the next thing that works. Although I'd "known" it in a left-brain sort of way, I hadn't fully appreciated the fact that my own peaceful acceptance was made possible, in large part, by my age and the satisfying life I've had up to now. While the feelings I've recently expressed are genuine and, I think, sustainable, they cannot be directly transferred to someone 30 or 35. Then on top of that, this is my scanxiety week for the quarter. My next CT scan is Friday, and by this time next week either I'll be happily hooked up to my friend Avastin for the 18th time and good to go until December, or my onc and I will be exploring the pros and cons of Alimta vs. Tarceva vs. something else. I don't think that would have a major impact on my own attitude, but I'm sure it would influence what I say to others, especially the "newly diagnosed," and I think about that. I'm glad I passed up the chance to be first responder last evening. This morning one of the first things I read was Jamie's marvelous post. That's the one I wish I could have written. My admiration and warm Aloha to all you guys, Ned

Donna, the comment of that "nurse" was beyond the pale, but your dad handled the situation well. He sounds like a really sharp guy -- I hope he can minimize the damage to your mom's frame of mind. Best wishes and Aloha, Ned

Julia and Aaron -- CONGRATULATIONS and many years of happiness! Aloha, Ned

Yes, but a careful observer would notice that those kinds of compliments I say only once! Aloha, Ned

Christine, I've seen articles discussing use of the CK7, CK20, and TTF1 "immunohistochemical stains" in trying to determine if an adenocarcinoma is a primary tumor and whether it might be one of the unusual variants like BAC, but I won't hazard a guess on what your FIL's pattern implies. I suggest you post a question for Dr. West, if you haven't already. I've received answers from him even on a Sunday afternoon! If you lay out all the known facts and he comes back with something like "your oncologist's analysis and plan of treatment seem very appropriate," you have cause to relax. But while he's not likely to directly contradict what your oncologist has said, if he hedges and goes into an Alan Greenspan type of on the one hand, on the other hand discussion, that would tell me that a second opinion might be justified. Yes, it's a hassle, but at least one of our members credits the fact that she's still alive to getting a FOURTH opinion! Aloha, Ned

The best to you on the 18th and well beyond! Aloha, Ned

Hi, Christine, welcome to the LCSC! Most of our U.S. mainland members are probably asleep at this hour, but within a few hours you should be hearing from some of them too. It's apparent that your lurking and other reading have been well directed, as you have a very good initial grasp of the situation. Your father-in-law is certainly fortunate to have you as his advocate! You mentioned your father-in-law's positive attitude and your hopes that he can maintain it. I agree -- attitude, expectation, mind-body connection, whatever you call it, is extremely important when faced with a disease such as cancer. Speaking personally, since I was 71 at diagnosis, with grown kids and a granddaughter in college, I've found it fairly easy to keep a positive attitude so far, and I believe I can maintain it if and when I get to a rough spot in the road. If I'd been closer to 30, just starting a career and family, it would have been a lot harder. At 70, I think your father-in-law can take this challenge in stride and that he has a great chance of fulfilling a goal something like mine -- to keep this thing beat back and eventually die with cancer but not from it. Now there are a couple or so things that would be nice to know for a more complete picture: 1. Do you know the specific cell type? The three primary cell types within the NSCLC group are adenocarcinoma (including BAC), squamous cell carcinoma, and large cell carcinoma. Although they're similar enough to be grouped together, they're also different enough to call for some variations in treatment. 2. Assuming the target of the radiation is the tumor in the lower left lobe (I didn't see anything else in your writeup that it could be), what is the reason for the radiation? A typical reason would be that the tumor is on the verge of pressing on some vital part such as the spine, a large blood vessel, the airway, etc., and it's necessary to prevent that even though some good lung tissue may be damaged by the radiation. (I haven't had radiation, so I'm not speaking from personal experience here.) 3. Is there a pleural effusion (fluid between the lung and the chest wall), and if so, was anything said about its characteristics (presence of malignant cells, color, exudate vs. transudate)? You asked about staging. I've provided one of the better references on the TNM (primary Tumor, regional lymph Node involvement, Metastatic involvement) staging system for NSCLC just below, and you're probably in the best position to determine if IIIA or IIIB sounds appropriate based on the discussions you've heard: http://www.emedicine.com/radio/topic807 ... nm_staging The answer to your question on first-line treatment would depend to a degree on the cell type. About the chemo dose, if radiation and chemo are being given concurrently, the chemo dose is generally reduced in strength but given more frequently than otherwise, e.g., weekly instead of every 2 or 3 weeks. I believe there is good evidence that radiation is generally more effective if given in combination with chemo, but most patients simply can't handle them both at the same time if the chemo is full strength. Someone in a weakened condition is less able to fight the cancer than a person who is relatively strong, so giving a higher dose than can be reasonably tolerated becomes counterproductive. There may be other factors I don't know about that caused the doctor to use the words he did. Well, I did it again, got into some areas clearly above my pay grade. For technical questions like these, after you have the other little bits of information I mentioned, you might post a question for Dr. Jack West at onctalk.com. He's a Seattle oncologist, an internationally known expert on lung cancer, who amazingly answers these types of questions from people like you and me, usually within 24 hours. He occasionally posts here too and also hosts a live chat session for our members every couple of months. A lot of us use the same login name on onctalk.com as here. A priceless resource! Best wishes and Aloha, Ned

What a classy lady! Too bad there aren't more people in the world with her compassion and perspective. Aloha from Ned

Leslie: I don't have any personal experience to share on the possibilities already mentioned, but certainly think they should be investigated. From your dad's reaction to the Ativan several weeks ago, I'd say he might be unusually susceptible to medication side effects in general. I don't know why that's the case with some people -- my wife is the same way, quick and rather strong reactions to tiny amounts of some medications and food additives, and she's a pretty tough gal otherwise. Wishing you the best. Aloha, Ned

ABSOLUTELY OUTSTANDING!! I'm not much of a dancer, but if you look over across the floor, I'm the sort of awkward one not caring one bit about the snickers from the sidelines. Now let's go for 4! Aloha from Ned

Hi, Patty, it's good to hear things went okay for you. I had Decadron (dexamethasone) but only as an IV premed, no tablets the night before. Don't know what the dosage was. I just felt energetic and "good" -- wasn't accused of any personality changes -- and started getting tired the evening of the first day after infusion. I also had a Neulasta injection that day (24 hours after infusion) and I believe that contributed to the fatigue I felt for the next 2 or 3 days. Like you, I had flu-like aches along with the fatigue, but that was only during the first cycle. On later cycles it was mainly fatigue and slightly aching joints, not so reminiscent of flu. When you feel like a nap, take a nap! No one is authorized to call you lazy for a while! Aloha, Ned

HOGWASH, in my ever-so-humble opinion. And please understand that I have nothing against hogs (except the human kind). Aloha, Ned

Rich, thanks so much for starting this thread. I've been thinking along similar lines for a while, something to go along with the orchid item I posted a few days ago marking my first year after diagnosis. In one of my first posts to the community last September, I mentioned a friend who became a quadriplegic following a near-fatal accident in a remote section of Kauai, and how successful and happy he's become in the years following that tragic event. He came by a couple of evenings ago to drop off a printing job for me to trim on my large cutter, and after he demonstrated the automatic ramp and other features of his new van we talked for over an hour in my driveway. I told him about the sudden shift in perspective I had in my hospital room last year, and he went into detail about his own remarkable experience more than 10 years ago. He was also eager to share his recent good fortune, some personal and business opportunities that have fallen into place, and we talked about other people we've known or read about whose lives changed for the better after an event that most would consider the worst thing imaginable. Such stories are not just bravado, and they are far more than simply summoning up the courage to make the best out of a horrible situation. They represent a new direction, almost the beginning of a new life. My friend and I used different terms to explain such events -- he with distinctly religious overtones as a born-again Christian, me with more of a non-religious universal frame of reference -- but I see them as the same in essence. Before I'm misunderstood (if I haven't been already), I hasten to add that the positive changes I'm talking about here are in the person with the disability or disease, not their caregivers or other family members. Stories might be found there too, but that's a different ballgame. I'd love to go on, but 1500 envelopes are waiting in my garage workshop, expecting to be printed by noon. Aloha to all, Ned

Sounds like the "telephone" or "pass it on" game -- first someone makes a completely valid comment on the roller coaster aspects of cancer (we've had plenty of discussions on that), the story goes from one person to another without the benefit of any verification, and before long it's distorted and compressed to the version Donna's mom heard. It's almost like...oops, sorry, almost forgot no political statements allowed... Aloha, Ned

As someone I greatly admire once told me, "You can't win a p***ing contest with a skunk." Aloha, Ned