recce101

I believe that's a good approach, and it stops short of pushing through what used to be a normal day or keeping up with what used to be regular activities. Your dad knows his own body better than anyone else, and if it's telling him to rest, he should rest! He doesn't sound to me like the kind of guy who looks for any kind of excuse to goof off, physically or intellectually. He has an inner drive that's guided him to this point in his life, and he's not going to lose that. I haven't had WBR myself, but from what I've read, the fatigue tends to build, and there will be days when what he feels up to will be WELL short of normal. Chemo is a different animal. The side effects are somewhat cyclical, but there's lots of room for individual variation and a few surprises. For me, the second, third, and sometimes fourth days after infusion were definitely nap days, and I never "planned" to do much else. For the remainder of the 21-day cycle, fatigue was not a problem, but other side effects (especially sores on the feet) often limited my activities. The days when fatigue or some other problem prevented me from doing what I wanted or needed to do were quite frustrating, and the frustration built up over time. I think your dad is and will be the same way, and an outside push to do what he already wants and needs to do but can't manage physically will not help. One thing I'll guarantee -- when he eventually does start to feel better, there will be no holding him back! One last thought. I get the impression that your dad's teaching duties are quite important to him, and that's great. Having to curtail his teaching significantly would probably be a major disappointment and add even more stress into the equation. Is there anything you folks can do to help him conserve energy for that particular activity? Like driving him to and from class if he's driving himself now? Or if the driving thing doesn't apply, maybe there's something else. Just a thought. Best wishes and Aloha, Ned

Thanks for the additional info. I'll add the chest xray to your "lucky" list -- that's not always done on a routine physical. I've had scores of exams over the past 30 years -- a colonoscopy screening, CT scan for a kidney stone, MRI for an inner ear problem, bone density screening, blood tests for almost everything imaginable including periodic PSAs, and probably some I've forgotten, but not a single chest xray since I left the Air Force in 1978. I'm convinced that if I'd had an xray in August 2005 instead of August 2006 when I was already short of breath, something would have shown up even then on the right lung and I'd be somewhere close to where you are right now. But that didn't happen, and I'm just happy I'm doing as well as I am. You might also want to add the names of the chemo drugs you're on. Side effects might become an issue in a few weeks if they haven't already, and it's good to know someone who's had first-hand experience with the same medications. Aloha, Ned

Right on! Or in other words, "eat what you want when you want." Adrian, in case you missed this discussion, take a look here -- it has some interesting angles on the issue: http://lchelp.org/l_community/viewtopic ... highlight= When I was nearing the peak of my chemo side effects, I was joking with some of the members that this "eat what you want when you want" thing was fantastic and was a dream come true, since I'd had to watch my weight all my life. So I was chugging 1000 or 1500 extra calories a day in Carnation instant breakfast, Ensure, and milkshakes as well as eating as much as I could of what didn't hurt too bad, but still just barely holding on to a weight 5 pounds under my target. My onc explained that difficulty eating and the resultant shortage of calories is not the only factor -- the presence of the cancer itself tends to cause body changes leading to weight loss. Now that my chemo side effects have almost disappeared, my hair is growing back, and my April scan was pretty good, there's been a disturbing development: in spite of cutting out those 1000 delicious extra calories, I'm almost back to the point of having to watch for weight GAIN! My dream has evaporated! I'm joking, of course. We all long for normalcy, even if normalcy was not quite perfect. Glad your dad is doing well and that he's still eligible for the trial. I'll be PMing you for the details. Aloha, Ned

Hi, and welcome to the LCSC! You don't say in your profile what symptoms or chain of events (like getting scanned for some other problem and "accidentally" being found to have lung cancer) led to your diagnosis. But if you're like a great many of us, it came as quite a shock. Most people don't show any noticeable symptoms unless the cancer has metastacized to the brain or bones or other organs, or has caused fluid to build up in the chest resulting in shortness of breath -- that's why so many of us started this cancer trip already in Stage IIIB or IV. You may not feel like believing this right now, but among those diagnosed with cancer, you're one of the lucky ones. First, yours was caught early, presumably before it had spread beyond the left upper lobe. Second, you were a candidate for surgery, which has been successfully completed. Third, you've started chemo, which must mean you have an aggressive oncologist who knows you may have a few cancer cells floating around in your bloodstream looking for a place to land in spite of the surgeon's "clean removal" statement. Some people don't get chemo after a so-called clean removal and later regret it. There are two statements I especially mistrust: "Take this road -- you can't miss it!" and "I got it all." If you need any other reasons to feel fortunate, one would be that you're starting this journey at a time when some remarkable advances in cancer treatment have recently come into use, and even better treatments are in the pipeline. So if something else crops up in a few years, the medical community will have even better tools at their disposal. Yes, it's a shock, and it might be difficult to plan ahead to the degree that you'd like. Depending on your family situation and employment, you may (or may not) need to make some changes you've never considered before. What I'd suggest now is that you spend a good amount of time browsing this site to see what challenges others have faced and how they're dealing with them. When you feel comfortable doing so, beef up your profile with more details and there will undoubtedly be some in the group who have "been there done that" and are ready to give you some tips along the way. Aloha, Ned

Dana, I'm so sorry for the pain your family has had to endure in recent months. Your mom is one of those I especially connected with when I started my own cancer journey last September, and part of her will remain with all of us who were touched by her presence. My deepest condolences and fond Aloha, Ned

Amazing. It must be that quantum reality thing again -- we're all connected! Aloha, Ned

WONDERFUL -- A HUGE CONGRATULATIONS!! Aloha, Ned

Raney, you know it's funny, I've got something very similar. Right upper arm, same side as tumor, chest wall mets, and hydropneumothorax (though port is on the left). It feels like a pulled muscle, and if it weren't for this cancer thing, I'd "know" that's what it was. I don't think it's bone pain, though I'm not actually sure what bone pain feels like. I guess bone pain is something like I had a day or two after my first couple of Neulasta injections, and this is different, not as deep. It hurts only when I move the arm into certain positions, mainly during exercise routines. I modified my routine to work up to where the pain just starts and then back off. After a few days of that I'm able to move further into the region that was hurting the most, another reason I'm pretty sure it's muscle pain. I've certainly had my share of pulled muscles and sprains over the years, and it's minor compared with some of those, and it's really odd I'd think it might be something else. But since a diagnosis of late stage lung cancer came as such a shock to many of us (with few if any symptoms), we're understandably attentive to the slightest little thing. A casual observer would undoubtedly label many of us hypochondriacs of the first order!! Aloha, Ned

Hi, Yirol: If you haven't yet visited Dr. West's website at onctalk.com, I strongly recommend that you do. In a couple minutes of browsing some of the "tarceva" search results, I found this recent discussion which might be of interest to you (there may be others): http://onctalk.com/bbPress/topic.php?id=117 Here's an excerpt: The discussion board software on onctalk.com has been modified recently, and there are still some problems in date stamping (i.e., the "7 years ago" is clearly erroneous), but the correct timeframe is usually apparent from the posts themselves. Best wishes and Aloha, Ned

A superb post! Brought out some additional nuances that were certainly news to me. The "worked out long ago" part is significant -- I hope the Canadian health service is periodically reviewing its policies in light of current treatment options. It's wonderful that your dad is finally getting good medical treatment and seems to be responding to the Tarceva. Please keep us posted on his condition. And thanks for being here, though like all of us, it's the last place you'd choose to be. Aloha, Ned

Rhonda, that's terrific! Very happy for you and your mom. You asked about being from WV. I'm not "from" there -- grew up in Texas and have lived in Hawaii 35 years. But during my Air Force career I spent 3 years at WVU in Morgantown as an AFROTC instructor. Looking at a current map, I see a lot of expansion has occurred since I was there (1969-72). For one thing, the football stadium used to be on the downtown campus, next to Woodburn Hall. Our offices were on the top floor of Woodburn, and we had almost a Goodyear blimp view of the playing field. But we usually didn't take advantage of that on game weekends because of the horrendous post-game traffic. Oh -- the Army ROTC staff was in the basement, which we thought was very appropriate. Aloha, Ned

Yes, it's semantics, but I'd leave out the "just" part. It can be a big deal to a patient who may not know in what context the doctor or nurse is using the term. I've ranted about "palliative" and some other easily misinterpreted words before, but this time figured I'd take a different approach. I found an article in Wikipedia which does a good job of explaining the evolution of the term, the different meanings it carries in hospice versus non-hospice settings, and some other points that go a long way toward explaining why there's such confusion today: http://en.wikipedia.org/wiki/Palliative_care No, I don't think your oncologist is holding anything back from you. He knows "palliative" automatically brings up end-of-life thoughts in many if not most people, even if such is not the case, and simply explains things to the patient and family using other words. In that regard, he's a cut above a lot of oncologists. Neither do I think the other doctors and nurses are jumping the gun. They're probably using the word in its non-hospice context and are not aware of how much unwarranted concern it can cause. I hope your mom does well on the tarceva. It's done wonderful things for a lot of people. Aloha, Ned

Hi, Barb: I think it's great that you're getting back to feeling normal, or as close to normal as you can. Though it may not show on the surface, the wisdom and perspective you gained during those roughest days are still with you and help make you a deeper person than you were before. The same is probably true of anyone who has faced a life-threatening or extremely abusive situation for an extended period of time. Some years back our neighbor across the street was a Navy officer who not long before had been released from six years as a POW in North Vietnam. He rarely talked about his experience there, and he carried no apparent hatred for his captors, but one could tell there was something different about him. He seemed to be more appreciative of the ordinary things in life, never got upset about the everyday hassles and disappointments that cause so much stress for many, appeared to have more empathy than most people I knew, and was very much "together" and "with it" (we use the word "akamai" in Hawaii). So Barb, I'm coloring you akamai, and hope you won't push your cats away any more! Aloha, Ned

Leslie and Adrian: Boy, it just never stops, does it? The old adage "when it rains, it pours" was never truer than for you guys right now. But I guess the main question is, how's your dad taking all of these on-again off-again surprises? Many folks his age can be remarkably resilient and unfazed by adversity. WBR is getting to be quite common, and I would imagine that's somewhere in my future too. When your dad does start chemo, will it be the clinical trial you mentioned on Monday? Aloha, Ned

Hi, Lisa, and welcome to the LCSC! This is a perfect question for Dr. West at onctalk.com. He's especially good at answering this type of question, about the pros and cons of various approaches. Browse his site for a while and you'll see what I mean. Best wishes and Aloha, Ned

I believe the young doctor said he was in the oncology fellowship program, which should mean that he was under close supervision. The powers-that-be at Johns Hopkins must have felt confident enough in him to allow his participation in the special, which they must have known would be generating a lot of interest. And maybe they thought he did great! If so, that in itself is a bit disturbing. As patients and family members, we know that what goes in the ears can be just as important as what goes in the veins. Physicians, especially those at teaching hospitals, need to realize that too and ensure the young docs under their wing fully appreciate that fact of life. Aloha, Ned

Teri: Hubby has no corner on writing in your family! Aloha, Ned

I thought the Koppel show was well done. Probably most of us who watched were hoping something would be brought up that wasn't, but on the whole it seemed balanced. It was sort of neat that the young oncologist with a full year's experience under his belt had to backtrack from his earlier categorical statement that Leroy was going to die from the cancer. That still may happen, but it's far from a certainty. Leroy's blog: http://www.npr.org/blogs/mycancer/ Aloha, Ned

Leslie and Adrian: I'm delighted to hear the good news. And if in fact your dad is able to start the taxol/carbo/avastin shortly after the SRS, I'd upgrade that to VERY good news. Traditionally (albeit a short tradition since things are moving so fast these days), avastin was not given to patients with a history of brain mets. But recent studies and clinical trials have led many oncologists to believe it is safe under certain conditions. That's encouraging, because avastin has been very beneficial to many patients. Here's a recent quote from Dr. West on the issue: I think you'll agree that things are looking a lot brighter now than a week ago. Pretty soon I might be willing to trade places, but your dad has to move to Hawaii first! Aloha, Ned

Hi, and welcome to the LCSC! Don't worry about your English. It's fine, and your good heart is evident in every word. Please post often. My very best wishes for you and your sister, and a warm Aloha -- which will have no problem reaching Turkey! Ned

When I was on the more toxic part of my treatment program (the 4 months that included taxol and carboplatin), I had considerable trouble eating and there were some family misunderstandings until I was able to satisfactorily explain my food problems to the others. Harsh chemo drugs really do a number on the digestive system, from top to bottom. Statements like "I don't have an appetite," "I don't feel like eating," or "nothing tastes good" can leave the impression that the person is being difficult or too particular and could overcome the problem with a bit more willpower. But such explanations don't begin to describe what was going on in my body. My mouth, tongue, throat, esophagus, stomach, and bowels had been damaged by the chemo. The mouth surfaces were raw and tender, and the taste buds were fried. So it wasn't a question of something tasting good or bad -- for the most part there was no taste at all. About the only sensation left was the feel of the food contacting the tongue and gums while chewing, then sliding down the throat and esophagus while swallowing. Food with firm edges, either cooked or uncooked, was irritating and even painful. Food with a grainy texture, such as beans and most meats, felt like sandpaper. Soft fruits, creamy soups and puddings with no solid chunks, ice cream (again no chunks), milkshakes, Ensure and its clones, and many other beverages actually felt good going down, and a little bit of the taste frequently came through. When the food reached the stomach, other things happened. Generally the foods that caused pain or discomfort going down were not welcomed by the stomach either, and they tended to bounce back out, along with some stomach acid, in the form of heartburn or acid reflux. So "I don't feel like eating" doesn't quite tell the story. Foods that went down pleasantly usually did okay in the stomach as well. Then too, for some reason the stomach simply didn't have the ability to accept as much food as before (or after) the chemo. Small, frequent snacks were much easier to handle than three "normal" meals, parts of which were usually left untouched. As we know, everyone is different, so another chemo patient's reactions to various foods may differ from mine. Clear communication is essential. Only the patient knows which foods feel good, which are irritating, and which are actually painful. The statement "eat what you want when you want" may sound indulgent to someone who hasn't been there, but it's good advice for those undergoing treatment with the "hard stuff." Aloha, Ned

Peg, I'm really sorry to hear of your mom's passing. Please know that you did everything you possibly could under very difficult circumstances. I don't think anyone could have done better. I hope you find the peace that you so need, and that your brother responds to treatment. Many people are inoperable, but there are usually other options available. I know it's very taxing for you to change focus so suddenly. Probably no one is looking after your health, so you must. Please do. With much Aloha, Ned

Adrian: About an hour ago I sent Leslie a PM in response to hers earlier. You seem to be in different locations, probably with different schedules, so I'll send you a duplicate. Check "My Mail" at the top. Aloha, Ned

Hi, Leslie and Adrian: It's a bummer that this complication had to crop up right now, just as you were getting a handle on some of your lung cancer and chemotherapy concerns, replacing the unknown with solid information and first-hand experiences of others who have been there. If I had received a finding of brain mets before starting my first-line chemo program, I'm sure my confidence and attitude would have become quite frayed at the edges -- it would have been a big unknown that I hadn't prepared myself for. If I got such a diagnosis now, I would see it as a setback but not necessarily a disastrous one. I know a lot more about the subject now than I did last September. I know that mets to the brain are a very common complication, perhaps the most common complication, of lung cancer. I know that about 50 percent of all adenocarcinoma patients will have brain mets at some point. I know that effective treatments are available now, and even better ones are in the works. And from my reading here, I know that many people have overcome the brain mets obstacle with success. The presence of the brain mets might change the planned chemo program (i.e., eliminate the avastin component), but the involvement of two lungs vs. one may not be particularly significant in terms of treatment options. The current staging system has been described as outmoded, but I guess it's the best we have for now. Please spend some time on Dr. West's site at onctalk.com. It's a marvelous resource and might help you deal with this unwelcome turn of events. Aloha, Ned

Hi, Steve, and welcome to the LCSC! Please help us help you by starting a chronological profile of your wife's symptoms, diagnoses, treatments, test results, etc. Click "My Profile" at the top of the screen, scroll down to "Signature," enter/update your information, and ensure that "Always attach my signature" is marked "Yes." The collective experience of this group is unparalled. No matter what it is, if it's something related to lung cancer, someone here is certain to have "been there done that" and ready to lend a hand. My very best wishes and Aloha, Ned