recce101

Hi, Michelle, and welcome! As Randy said, everyone reacts differently to chemo. What you read will give you a feel for what is "possible" but not what "will" happen with 100% certainty. A lot depends on your dad's general health other than the cancer, as well as his attitude. I had Taxol and Carboplatin along with Avastin over a 4-month period -- 6 cycles at 3-week intervals -- and now am continuing with Avastin only. You can read my profile below for details of the various side effects, which I now know were attributable to just the Taxol and Carbo, since with Avastin alone all the side effects I had experienced and accumulated over those 4 triple-agent months have essentially disappeared. The overall intensity of my side effects was about average, or maybe a bit lighter than average, and the only one that was genuinely worrisome (not just uncomfortable or bothersome) was the neuropathy, which came on suddenly quite late in the program but responded unusually well to medication. Since your dad is getting radiation too, his chemo doses may be somewhat less than full strength, and that may account for the weekly versus every three weeks chemo schedule. That's just a guess on my part, as I didn't have radiation. But I do know from what I've read that radiation can really add to the fatigue factor. Plenty here have had radiation along with chemo and can advise you better. Hope to hear from you often as you help your dad through this. Ask any question that comes to mind. There are no dumb questions. Before you know it you'll be answering the "newly diagnosed" yourself! Aloha, Ned

Hi, Michelle, and welcome to the LCSC! There is a "blood-brain barrier" which acts to protect the brain from chemicals in the blood, and this blocks or greatly dilutes most chemotherapy agents. I believe there is some research going on to develop chemo agents which will cross that barrier, but at present radiation (which has become very precise) is the main tool for dealing with brain tumors, including brain mets from lung cancer. I'm not aware of any other place in the body with a similar barrier, but there could be, I simply haven't heard of it. Here's an article on the "BBB" in Wikipedia (which I'm liking more and more as an up-to-date resource): http://en.wikipedia.org/wiki/Blood-brain_barrier By the way, our members uniformly recommend that patients take a family member or other close associate with them to appointments, especially if they'll be seeing an oncologist, surgeon, etc. This has nothing to do with the mental competence of the patient -- one can be sharp as a tack 24-7 and still miss something important, possibly because of thinking ahead to the next question. Voice recorders are also a great idea, and I've never heard of a physician who objected (wouldn't be my physician for long, I'll tell you that!). I also have a notepad lying on the exam table which I use to make notes or jog my memory about things I wanted to ask. Again, welcome, and Aloha, Ned

One of my favorite lines from "Laugh-In" (1968-73) was "Thanks, I needed that." Then my wife, when we were still dating in the 1970s, wanted to make sure I knew how to spell "assume" -- she said it's spelled "A-S-S, U and ME." More often than not, since I learned that fact, it's been the "ME" part that applied. Obviously, I should have waited for answers to some of the questions I asked instead of assuming I knew what the answers would be and launching into phase 2 of my post. It seems that some of us never learn. Just so you know, though you may find it hard to believe, I do understand what you mean when you say "Me has been suspended for the duration." My wife says the same thing in somewhat different words: "Caregiving defines my life." It's been that way since 1995, when both of her parents suddenly needed 24-hour care. She closed her business and they moved in with us. Her father passed away in 1997, about the time my own father took a turn for the worse. I moved in with him until he required hospitalization, and he passed away in 1998. Her mother has been in and out of the hospital for the past 12 years and is still living with us. Since 1995 my wife's main "outside" activity has also been framed around caregiving. She co-founded the Central Oahu Caregivers' Support Group, which has been meeting monthly at our local hospital since 1997. Although she's tied to the house most of the time, she spends hours on the phone explaining options to new caregivers referred to her by government agencies and charitable organizations, people thrust into the caregiver role with no warning, not knowing who to ask or even what to ask. In May 2005 we attended a function at the State Legislature, where she gave a talk about these experiences, including this in her opening: "When people who I haven’t seen for a while ask me, 'What are you doing now?' I answer that I am a caregiver, because the role defines my life." Of course this was all before my own problems began! I won't begin to pretend that my burden has been anywhere close to hers, even now. I was intensely involved with my dad, with her dad and now her mom to a lesser degree, have helped with various caregiver support group projects, and still do the website, but of course nothing is the same as having the primary responsibility on your own shoulders. Fortunately I'm not much of a drag on her now (I hope), though I was for a time after my surgery and could be again in the future. Time to go pick up pizza for dinner. Aloha, Ned www.wvpress.com/care/

Teri: I've never known anyone quite like Bill. One of a kind! And you, Teri -- words can't describe your grace, strength, and compassion for others while under such unrelenting pressure these past months. Those little snapshots of Bill and the nurses and the family in those last days are priceless. Thanks so much for sharing them. With love and Aloha, Ned

Hi! Just to make sure everyone is on the same page, the procedure which was explained in excellent detail by Carleen, karlalong, and Welthy is a thoracentesis or "pleural tap," which removes fluid (pleural effusion) from the space between the lung and the chest wall (pleural space). The needle does not go INTO the lung. Pleural effusion is a very common condition, and thoracentesis a very common procedure, for people with lung cancer. On the other hand, there is also a procedure known as lung aspiration or "lung tap" which removes fluid from INSIDE the lung for analysis. Two common causes of fluid IN the lung are pneumonia and congestive heart failure. Lung aspiration or lung tap is a century-old procedure which at one time was a standard diagnostic tool in cases of childhood pneumonia. It is used less frequently today. To add to the potential for confusion, some doctors refer to a thoracentesis or pleural tap as a "lung tap." The thoracentesis I had last August did help with my shortness of breath, but just to a degree. What appeared to be a continuous body of fluid on the CT scan was partly "loculated" fluid trapped in small sacs separated by fibrous tissue. I believe some of this was cleared out later during my thoracotomy. Best wishes for next Tuesday! Aloha, Ned

So the doctor is going to "give you" 12 months! How sweet! There are some words in my special occasions vocabulary that would come in really handy about now, but I'm afraid Katie wouldn't permit it. Who is this guy? Since he knows it all already, he probably hasn't felt the need to get any updates on cancer treatments for years, but what may have been true 10 years ago is no longer true. I agree with Sheri -- post the specifics on onctalk.com and see what Dr. West has to say. He's a patient advocate in the best sense of the word and no shrinking violet. Aloha, Ned

Hi, Lonely, and welcome to the LCSC! As I read through your posts and the very thoughtful responses, a few things came to mind. If any of my questions seem a bit too direct, please think of them as rhetorical, just something to be considered if relevant or dismissed if off the mark. I get the impression that your husband is no longer getting treatment for the cancer, just palliative care via the steroids and the morphine capsules. If that's the case, was stopping treatment his own decision, or was it his doctor's decision in accordance with NHS policy? You said he's not in pain and is not having any problems except general fatigue and some shortness of breath on exertion. Was he in a lot of pain before starting the Zomorph? What sort of prognosis has he been given? (In this group we place very little weight on prognosis, but what he was told might have some significance.) Maybe I'm missing something, but it just seems to me that he's being treated (by you, by the system) as if he's a lot sicker than he actually is. Is he still getting scans which show continued progression of the cancer? As you probably know, spontaneous remissions, while rare and (in medical terms) unexplainable, are not unheard of. To hitchhike on Leslie's Ativan comment, I found this on the cancerbackup.org.uk website: Ring any bells?But regardless of how valid or invalid any of that turns out to be, there's one thing I'll say with certainty: now, and into the future, more of the focus needs to be on YOU. Not all of it, not necessarily most of it, but more of it. The shopping trip gave you a chance to "get out," a critical need for any caregiver. And as a side benefit, it was good for your husband as well. Do that sort of thing more often, and get involved in other activities that you used to enjoy but have put on hold for too long. If your husband wants to join you in some of these outings, great, but remember, it's not just about him. You should be equal partners, and he should realize and encourage that. My best wishes and Aloha, Ned

TERRIFIC!! Aloha, Ned

Hi, Mike, and welcome to the LCSC! There's a GREAT amount of variability from one person to another regarding (1) how well one responds to chemo and (2) how intense the side effects are. From reading responses to your posts and by browsing through what's already here, you can get a feel for some of the possibilities. General health at the beginning of chemo, frame of mind (attitude), and genetics all have a role. It helps to keep a daily log so you can detect patterns that repeat from one cycle to the next. For many people, fatigue (partly or largely due to the Neulasta injection) is the most prominent effect felt during the first week, and others begin to show up as the fatigue diminishes. But as we say, everyone is different. Some of the members who answered you before I saw your message (I'm out here in the middle of the Pacific) mentioned giving us more details. What they're referring to is a chronological profile of symptoms, diagnoses, treatments, test/scan results, response, side effects, etc. like you see at the bottom of most messages. To create or modify a profile on behalf of your wife, click "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 hit "Submit." My best wishes and an abundance of Aloha, Ned

The shortness of breath I had experienced last summer (before treatment) disappeared in October during my first taxol/carbo/avastin cycle, but it returned in January during cycle 5. My onc detected no decrease in breath sounds, my blood counts and pressures were still okay, and I was still getting good readings on my plastic "toy" spirometer, so we theorized that the SOB was probably a cumulative effect of being on an intensive chemo program the past 3-1/2 months. It gradually resolved over the next month or so and has not returned, and scans have shown continued stability. It could be that your mom is having a similar cumulative or delayed reaction to the chemo. I've heard that neuropathy can begin months after a chemo program has ended, so why not SOB? I hope your concerns are eased after you mom's Tuesday appointment. Aloha, Ned

If I could set the clock back a few years, I'd certainly opt for the x-ray, even if I had to pay for it -- or in the future, a CT scan if the prices and radiation exposure keep coming down. Although an x-ray is not as precise as a CT scan and the smaller nodules would likely be missed, it would do a very nice job detecting a pleural effusion, which was my first indication of trouble. By the time my August 2006 x-ray was done, only the top third (essentially just the upper lobe) of my right lung was "above water" and useable. The remainder was collapsed and permanently damaged. All this with no symptoms other than what I attributed to old age. I'm convinced something would have shown up if an x-ray had been done the previous year. When I was in the Air Force (1957 to 1978), a chest x-ray was part of a routine physical. What did they know back then that we don't know now? Aloha, Ned

Disclaimer: The following is a non-political comment: Would be a lot funnier if it weren't so true. Aloha, Ned

OUTSTANDING!! I'll bet your canine friend has been all over you both with wet kisses to the max. What a treat for you all! Have a great trip. Aloha, Ned

Outta the park, Slugger!! So what DVDs do you have lined up? I've found some good oldies (that's anything before 2005 ) in the Wal-Mart 2-for-$10 bin, movies I'd heard good things about but somehow missed earlier. Happy viewing! Aloha, Ned

That does sound like a good question for Dr. West, and there's a good chance he will answer before you see your own onc later this week. Be sure to give him most of the background you have in your LCSC profile. First, to post a question on onctalk.com you need to register and login. It's just as simple as registering here on lchelp.org -- in fact, I use the same username there as here. Once you're logged in, click the "Q&A/Discussion Forums" in the left column, and when the forums page opens you should see "Welcome, !" a couple of inches from the top. Pick a subject area that seems appropriate (don't agonize over this -- he will move it elsewhere if necessary), click on that line ("Chemo Queries" is one possibility), and scroll to the bottom of that page to "New Topic in this Forum." Fill in the "Topic title" line with a short, descriptive name for the forum thread you're starting. Enter your question in the "Post" window (a scroll bar will appear if it's too long to fit in the existing box, which it probably will be), then click the "Send Post" button way at the bottom below the formatting codes and the notes to not paste from Microsoft Word. That's it! Your post will appear immediately, and in a few minutes you can refresh the opening page and see your post listed as a new post in the left column. If you're not seeing some of the items I described, send me a PM and we'll try to figure out what's happening. Aloha, Ned

Sylvia: Adrian made some excellent points. Please read this discussion thread on onctalk.com -- all of it, including the questions and answers. It contains some real eye-openers on communication between onc and patient/family: http://onctalk.com/2007/05/29/discussin ... -oncology/ I spend as much time on onctalk.com as I do here. Both sites are top notch, one of a kind, and complement each other remarkably well. Please keep in mind that with recent advances in treatment, lung cancer -- including NSCLC IIIB -- is no longer a death sentence. The fact that they're even discussing the possibility of lung surgery is a positive sign. I doubt if I'll ever be a candidate for lung surgery, yet I expect to be around for a long time and die of something else eventually. Best wishes and much Aloha, Ned

Hey, Adrian, sounds like you've got your dad back, and for his part, he can enjoy basking in normalcy! I know I lost a LOT of muscle mass very fast after my thoracotomy and while on chemo, and only in the last couple of months have I been able to start putting it back on. Now I can do about as much with my 15-pound bar that I could before, which was not all that impressive, I admit. But it sure feels good. Was wondering if the onc said how long he plans to keep your dad on the 2mg of Decadron. My only experience with it was once every 3 weeks in the premed IV bag. I know some who were on the oral form for a while developed side effects and/or had trouble getting off of it, but that was probably a larger dose. Of course some people react to medications at much lower doses than others, so it's probably something to keep in mind. Yep, you guys have caught a nice wave. When it gets close to shore you can avoid a wipe-out by dribbling off the end and paddling out for another one. A few more waves and these treatments will be over! Aloha, Ned

Oh, good. You know how sensitive and shy I am, and I just needed to be reassured. Aloha, Ned

Gee, I thought Donna G was talking about me for a second. What a letdown! Anyway, I just wanted to say that as the resident experts on lung cancer, a lot of us find ourselves in the role of educator for friends and acquaintances who haven't had reason to get updated in the last few years. Usually when they ask me how I'm doing with a look that indicates they've at least heard something about my health status, I first say I had 4 months of intense chemotherapy but now am on a maintenance program with few side effects, let that soak in a few seconds, then launch into the lung cancer / haven't smoked for 43 years / not a death sentence any longer routine to save them the embarrassment of asking a stupid (to us) question about smoking or prognosis. Then I assure them that it doesn't bother me a bit to talk about it and that I welcome the chance to share what I've learned, and end with asking whether they think I should let my hair grow out like it was before or keep it short like now similar to the flat-top that I had in my twenties. They usually vote for the flat-top. Aloha, Ned

Yes!! Whether we call it prayer, meditation, positive thoughts, connecting, the power is flowing already... Bill, you're wanted back on the posting circuit. We need you, I need you, my stagnating vocabulary for sure needs you!! Much Aloha, Ned

Good point, and I'll try to remember that the next time I'm waiting. It was about a year ago today when I started having that persistent cough that led to my chest x-ray and all the other events in this crazy year. Aloha, Ned

That's a riot! And you're so correct, laughter is the best medicine. Helps the body to relax and get those healing forces moving again. Anyone who doesn't understand that probably hasn't faced and successfully dealt with true adversity. But I know exactly what you mean about some of those rolling IV stands -- completely unstable. To avoid looking like a drunk, I've occasionally tilted up the front and let it roll on just the two back wheels. Aloha, Ned

GinnyB, that was terrific! Our Liz is gonna rake 'em over the coals on this one!! With some gutsy and gritty Aloha, Ned

Hi, Valadi, and welcome to the LCSC! I had a thoracotomy last year, and the pain was not nearly as bad as I had expected. I never had any pain at all while lying or sitting in a stationary position -- only while coughing or moving to get off or back on the bed. They took the epidural out of my back a couple of days after the surgery and substituted oral medication. A five-day stay was programmed, but I was able to go home after four days. I do have some suggestions for things you can do NOW to make it easier for you when you go home: 1. Make some advance preparations for sleeping. I found it MUCH easier to sleep in a recliner chair than in a bed, mainly because getting up from or back into the chair did not involve any rolling to the side. If you have a favorite recliner chair you might consider moving it to the bedroom now so any furniture rearranging can be done while you're still able to participate. 2. As you go about your daily routine now, take notice of the items which you are frequently taking from shelves, cabinets, or drawers, and place these items in accessible locations that don't require any bending down or reaching up. When you get home from the hospital you'll be able to carry on many of your normal activities without needing help. 3. Stock up now on the medications, food items, and supplements you and others have found most effective for preventing or relieving constipation. Many (if not most) pain medications tend to cause constipation, and I believe it's as important to stay ahead of that as it is to stay ahead of the pain itself. Just my opinion, of course. Best wishes for an easy surgery and quick recovery -- give us an update as soon as you're able, which should be very soon after you get home! Aloha, Ned

Hi, Barb, and welcome to the group! You can read my profile below, which at the moment is up to date, and in an hour I'll be heading down to my oncologist's office to get the results of last week's CT scan. If it's stable or better, I'll be getting another Avastin treatment. If not, then some adjustments may be made. As you probably know by now, adenocarcinoma is the most common form of lung cancer, accounting for 30-35% of all primary lung tumors. Well studied, and treatable. My best wishes for your dad, and keep those messages coming! Aloha, Ned