recce101

That was a nice POW. But watch out, 'cause if you get me started you're gonna have some tough competition for first in line! Aloha from Ned

Hi, Brandy, welcome to the LCSC! And thanks for doing the profile of your grandpa's situation. That's usually one of the first suggestions we make to newbies, but you're ahead of the pack on that. What was the target of the radiation treatments -- a lung nodule? Please let us know how his next scans turn out. Now that his treatments are done, at least for the time being, he'll probably start to put some weight back on. Chemo, especially taxol, is hard on the entire digestive system and it takes a while to recover from those effects. Any time you have questions, plunge right in and ask. And since you've already got considerable experience as a caregiver, you'll be able to help others who are just beginning that role. You won't be thought of as a newby for long, I'll guarantee you that! Best wishes and Aloha, Ned

Let's say a hypothetical someone with the power to make it happen gave me two choices: 1. 100% guarantee of stable the rest of my life, or 2. 75% chance of a total cure with the remaining 25% unknown. Yep, you guessed it, my choice would be STABLE!! Aloha from Ned

Wow, Peachy, that's a tough one. So you know where I'm coming from, just before logging in here this morning I spent some time on another wonderful site, onctalk.com, and posted a response describing my own preference for quality of life versus the most aggressive treatment possible: http://onctalk.com/2007/08/19/cis-vs-ca ... mment-2175 But my choice was a subtle one between two rather similar treatment regimens, not as much of an all-or-nothing approach as yours seems to be. Only you, with the help of any family members you choose to consult, can decide what is best for you and your family. And even then, you may later second-guess your decision as things unfold. But I'm going to toss out some random thoughts -- facts, opinions, rhetorical questions -- to hopefully add a few shades of gray to your palette. Relatively few people with adenocarcinoma are diagnosed before Stage III or IV because the cancer can progress for a long time without producing any noticeable symptoms. You mentioned a "routine chest X-ray" in 2005 which was normal, and then a "routine chest CT scan" in 2007 which led to your diagnosis. You were very fortunate that these were routine in your health care situation, because they are not standard or routine for most of us and they are not likely to be done unless there are symptoms to check out. While Stage IV is technically incurable, treatment will probably extend survival and MAY actually improve overall quality of life. Not all Stage IVs are the same, and you may have what I would call an "early" Stage IV which is very treatable, especially if treatment is begun soon. Side effects from chemo are for the most part temporary, and are better tolerated when one is healthy (aside from the cancer) and feeling well. Much progress has been made in reducing chemo side effects, and these days many people complete their treatment program with no nausea, minimal interference with their normal routine, and without being a significant burden on others. Whole brain radiation can be quite fatiguing, but it can also be very effective (I have no first-hand experience with WBR, but many others here do.) Deferring treatment now may prevent some short-term inconvenience to family members, but that may come at a cost later. Now please don't take offense at this, and no answer is necessary, but search deeply and ask yourself, is there some issue other than the cancer that is affecting your thinking on this question? Regardless of what you decide, no one can say you were "wrong." My best wishes and Aloha, Ned

Hi, Hebbie, it's nice to "meet" you. I'm one of the newbies that you mention, although it seems like I've been here a good part of my life! You asked a couple of tough questions, and I doubt if there are any clear answers. I had a talc pleurodesis during my exploratory thoracotomy last August 31, but it was largely unsuccessful since the lower half to two-thirds of the pleural space was criss-crossed with strands of fiber and most of the lung was unable to expand out to the chest wall. I now have a persistent hydropneumothorax there, with the loculated pockets of fluid and air now at about the 50% level, but I've never had any pain associated with it and it hasn't needed to be drained since the day of the surgery. Are you familiar with Dr. Jack West's website onctalk.com? There's an article and discussion here that might be of interest: http://onctalk.com/2007/03/18/mpe-managment-options/ I don't have any experience with the macrobiotic diet, but you might post a question for Dr. Dan Labriola, a naturopathic physician who practices at the same Seattle cancer center as Dr. West. Here's a recent onctalk.com post by him followed by some discussion, including a comment by Dr. West which I've excerpted below the link: http://onctalk.com/2007/08/08/cam-intro-by-dr-labriola/ I hope you reach a decision that gives you peace of mind, which seems to be another important ingredient in our ongoing battle with cancer. Best wishes and Aloha, Ned

Hi, Christine, welcome to the LCSC! It's great that you're going to the doc with your dad tomorrow (today in your time zone by the time you read this). That's an excellent idea for any office visit or consulatation where new information is likely to be discussed. You might also consider taking a small recorder along -- I've never heard of a doctor who objected. As Nina suggested, when you get the specifics of cell type, stage, planned treatment, etc., you can help us help you and your dad by including the details in a profile like you see at the bottom of our messages. Here's how to do it: Click on My Profile above, scroll down to the Signature block, enter/update your information, then scroll down further, ensure Always attach my signature is marked Yes, and click Submit at the very bottom. There are people in this community who have successfully faced just about any cancer challenge imaginable and are ready to help you and your dad every step of the way. Best wishes and Aloha, Ned

Colleen, CONGRATULATIONS from the "other" Ned!! Getting such great scan results so soon after a IIIB diagnosis is remarkable. I gather that you didn't have a pleural effusion and that the staging was based on having a second nodule in the same lobe. Since that lobe has been removed and you had follow-up chemo, I think you have a good shot at a "cure" (which I believe technically requires 5 years without a recurrence, and someone will correct me if I'm wrong on the criteria). Did you have symptoms which led you to have the initial x-ray? Many of us don't have symptoms until it's too late for a "cure" to be possible, and the best we can do is manage the cancer on a long term basis, like some other chronic disease. I hope you'll stick around to lend support and encouragement to others, especially new arrivals to the site. It's also great that you got the good news just before the weekend. Did you realize it's a 3-day weekend? It is in Hawaii, where the 3rd Friday in August is Admission Day, celebrating the day in 1959 when Hawaii became the 50th state. Even if you don't live here, you have my personal invitation to celebrate it with us! Aloha, Ned

That'll teach you to eat after brushing your teeth! You do brush your teeth before going to bed, don't you? By the way, I had a few very minor nosebleeds when I was on the taxol/carbo/avastin combo, but I've never had one on avastin alone. Aloha, Ned

Tom and Macrina... Though I have daughters of my own, I can hardly imagine the depth of your grief. Our love and Aloha as you search for healing in the days ahead. Ned and family

Some years back we had a dachsund who loved sleeping under the covers. As a burrowing animal, he would immediately dig his way to the "bottom" of the bed and snuggle against our feet. Felt pretty good on those chilly winter nights, once we got his fleas under control! Aloha, Ned

That's one way to give him the bird -- priceless!! Aloha, Ned

I'm thankful that dear friends like Raney can enjoy the kinds of days I've been blessed with for a while. And speaking of shave ice, I'm also thankful that we discovered Samurai Brand Maui Style Dessert, which is available in several flavors at our neighborhood Longs drug store. It's the closest thing I've found to standing in the shave ice line at Matsumoto's on the North Shore, asking for a scoop of ice cream in my large paper cone before the finely shaved ice and flavorings are added, and standing in the shade outside biting at the mountain of ice and stabbing with my wooden spoon until I've reached that exquisite mixture at the bottom. Pure pleasure! My wife tells me it's called Maui style because there's a shop in the Maui Mall that's been selling a similar but even better version for years -- "guri-guri," probably a multi-ethnic rendition of "goodie-goodie" from the old plantation days. Here are a couple of articles on guri-guri, one of which has a home recipe approximation that I haven't tried: http://onokinegrindz.typepad.com/ono_ki ... uriem.html http://mmm-yoso.typepad.com/mmmyoso/ice ... index.html Aloha, Ned

Jane: Words are never enough at a time like this, but I want you to know all your posts the past several months have touched a resonant chord in me. They've all been special and somehow a little different. Your mom was so fortunate to have you close by her side. My warmest Aloha, Ned

Great description -- that's exactly it! One thing I've never quite figured out is what muscle or joint pain is trying to tell us. Sometimes it's supposedly a signal to stop doing what you're doing, let it rest and heal, otherwise you'll make it worse. Then other times we're told to just work through it, otherwise it will freeze up and get worse. How do you tell the difference? To me the pain is not the issue, just the concern that I'm causing further damage. Aloha, Ned

Can your mom handle something like Ensure Plus? That's 350 calories in a good-tasting (my opinion) 8-ounce shake -- for several weeks I needed to drink 3 of those or something equivalent every day in addition to my other meals to maintain weight. Cancer causes weight loss in a variety of ways, including metabolism changes, and to maintain or gain weight your mom needs a lot more calories now than she did before cancer became an issue. Some of our members who are familiar with celiac disease may have other or better suggestions. Best wishes and Aloha, Ned

Ves: As several others have said, and probably your mom's oncologist too, preventing excessive weight loss is critically important for someone on chemo. Maintaining a balanced diet is nice, but getting those calories in needs to be the primary goal. And that means more calories than before, because the cancer causes various changes in the body which in turn cause calories to be burned faster than usual. You may have heard the advice to a cancer patient, especially one on chemo, "eat what you want, when you want." Excellent advice, though some caregivers may think it's somewhat indulgent, and that the patient should have enough willpower to eat even if there's no "appetite" or it "doesn't taste good." But I've been there as a patient, and those words don't come close to explaining what was happening to my body and to my digestive system in particular. While the taxol/carbo may affect your mom's GI tract in a different way than it did mine, knowing what it was like from my perspective may help you in dealing with your mom's eating difficulties down the road. The chemo basically fried my taste buds, and most foods had no taste at all -- not bad taste, simply no taste. At the same time, the tongue, mouth, throat, and esophagus became very sensitive and irritated. This meant that the only sensation when chewing, swallowing, or drinking was the FEEL of the food or liquid going down. Any food with a rough or grainy texture (meats, breads, beans, etc.) felt like sandpaper. Any food with distinct edges (celery, carrots, etc.) felt like broken glass if raw, gravel if cooked. I quickly learned which foods were the most irritating and avoided them, even if they were normally my favorites, because I knew the irritation caused by them would make other foods even more difficult to eat that day. On the other hand, some foods actually felt good going down, and sometimes a little bit of the taste would start to come through. Cold fruits packed in syrup were always good, also milkshakes, Ensure and its clones, any ice cream without solid particles, Carnation instant breakfast drinks, and smooth soups without chunks (cold or lukewarm, not hot). If the family was having something for dinner that smelled really good I might try a little, but basically I maintained my own stash of agreeable foods for those months and tried to prevent my limitations from affecting the rest of the family as much as possible. Another factor was what happened when the food hit the stomach. I never had any nausea, but there was a tendency for the stomach (which was also irritated) to reflux certain foods. Usually this was not a problem, since the foods my stomach wanted to reject were the same ones I was already avoiding. But now, 6 months after finishing the taxol/carbo, my stomach is still a little sensitive and there's a slight tendency toward heartburn that I didn't have in the pre-cancer days. I still take antacid pills occasionally and have found that keeping the upper body elevated for sleeping reduces the reflux. I hope this gives you some insight to what MIGHT be happening with your mom, even if she doesn't use the same words to describe it. Best wishes and Aloha, Ned

Hi, welcome to the LCSC! I don't have any personal experience with Alimta "yet," but it and a couple of others are waiting in the wings for the day Avastin stops working for me, as it very probably will at some point. There are a number of discussions about Alimta on onctalk.com, a terrific resource run by Dr. Jack West, a Seattle oncologist who posts here when his time permits and answers several questions every day through his own site. You can type Alimta in the search window on his home page, or for starters you might look at this introductory article and discussion on the drug: http://onctalk.com/?p=274 You don't have to register to browse through the site, but you do if you want to ask a question. A lot of us have registered with the same usernames on onctalk as here. You'll get more responses when our mainland friends wake up. Aloha, Ned

Hi, Leslie: Has your dad started a new exercise routine, or perhaps been doing some work around the house or office, that used chest muscles which have been idle for a while? I know it sounds implausible, but I had something similar (though not in the chest). After I finished my "hard" chemo program and started feeling better on Avastin alone, one evening I noticed a rather sudden and sharp pain or ache near the base of the spine, extending left and right to where the 2 back pockets are normally located. It became continuous and pulsated with every heartbeat, not especially severe on a scale of 1 to 10, but psychologically disturbing because of the always-feared cancer connection. I mentioned it to my wife, who reminded me that I'd just started riding my stationary bike again after a break of several months. At first I discounted that as an explanation, since it didn't feel like other sore/strained muscles I'd had in the past, but it gradually went away over the next 3 or 4 days and I'm now convinced she was right. One of those treasured "features" of old age combined with the slow healing induced by Avastin! I hope it's something like that with your dad. Aloha, Ned

Wow, Missy, don't you ever do things the easy way? I know, you're trying, you're trying! So glad you had that appointment when you did and that things are looking up for you guys. My Aloha, Ned

I know, patience is not my strong suit either. But if you compare your (Char's) chronology to the others here, I think you'll agree that what you folks and your medical team have accomplished in just over a week is nothing short of amazing. There are some very good reasons for a short break at this point. On a PET scan, active cancer sites are not the only things that "light up" -- areas of inflammation do too, and I'll bet there are plenty of those right now. By the 14th, enough of that chaff might be off the radar to give the radiologist a decent chance of determining what is possibly cancer and what probably isn't. A few days' delay will also enable Char to build up more strength before the start of chemo. The better her condition at the beginning of treatment, the better she'll be able to tolerate the chemo without needing a treatment break somewhere down the line, and the better her response is likely to be. With lots of Aloha from Central Oahu, just a few miles south of Schofield, Ned

Welcome to the LCSC! Wow, you had 10 cycles of Taxol/Carbo? Most people can't tolerate more than about 6 before the cumulative toxic effects start to outweigh any remaining benefits of the chemo. It's great that you were able to handle it for so long. I had 6 cycles of Taxol/Carbo/Avastin and have been on Avastin alone for maintenance since February. Your example will give a lot of encouragement to the "newly diagnosed" folks who show up here almost every day. Best wishes and Aloha, Ned

Hi, KHTM, welcome to the community! I agree, you've done very well, very well indeed! With all you've been through the past 5 or so months, it would be surprising if you DIDN'T have a few unexplained things going on here and there. The taxol/carbo combination is very aggressive chemo, and in addition to having side effects of its own, lowers the body's resistance enough to allow long-dormant conditions unrelated to the cancer to erupt with little warning. I'll spare you my stasis dermatitis story. A third factor is the Avastin, which I've been on for 10 months (concurrent with taxol/carbo for 4 months, and by itself for 6 months so far). Avastin fights cancer by choking off the blood supply to newly forming tumor tissue, but there's an apparently unavoidable spillover effect which interferes with the formation of GOOD new tissue, resulting in slow healing throughout the body. So I'm thinking that might have a bearing on your esophagus problems, which I believe you said started while you were on the taxol/carbo. That chemo combination certainly did a number on my entire GI tract, a fairly common situation from what I hear, and I'm still not completely recovered from those effects although I finished the taxol/carbo in late January. But the Avastin seems to be doing what it's supposed to be doing, and I haven't noticed any problems with it other than the slow healing, so I'm not complaining! When our mainland friends start waking up you should get some answers to your other questions. Aloha, Ned

Hi, Mikee, welcome to the LCSC! You've come to the right place for support as well as solid, first-hand information from patients and family members who are in the same fight as you. I see Randy has already given you instructions for creating and updating a diagnosis/treatment/response profile on behalf of your wife. Not only will that help us provide more specific answers to your questions, it will also save you LOTS of time whenever you have a question or comment. No need to give background every time you post -- just plunge into the subject at hand. Congratulations to you and Char on your positive, proactive attitude. It really does make a difference, sometimes a critical difference. The mind-body connection is no longer "just" a primarily religious or metaphysical concept -- it's rapidly gaining a secure place in mainstream medical practice as well. Cedar Park! On Google Maps it seems to be about the same size as my old hometown of West, just north of Waco on Interstate 35. I went to college in Denton, way back when the school was called North Texas State College. But after my Air Force years I settled in Hawaii and have lived here since 1972. Again welcome, and Aloha, Ned

Hi, Ray! I'd like to add my welcome to the others you're received. Several have suggested that you start a diagnosis/treatment profile on behalf of your wife so we can give you more specific information. Here's how it's done: Click on My Profile at the top of the screen, scroll down to Signature, and enter/update your information. Scroll down further, make sure Always attach my signature is marked Yes, then click Submit at the very bottom. Aloha, Ned

Some of these are real gems! I don't have anything of that caliber to offer, since I usually cut 'em off at the pass by launching into my been on chemo, haven't smoked since 1963, nonsmokers get it too, no longer an automatic death sentence routine if someone hesitantly brings up the subject of my health. But what I HAVEN'T figured out how to handle is when I run into someone I haven't seen for a while, we both say "hi," then all I get is a silent, expressionless stare! About the only thing I've come up with so far is to say "you must be wondering about my crew cut" and move into the been on chemo sequence from there. Or a couple of times I've said "and how's YOUR health been?" and followed their lead. Many of us, instead of steering the conversation toward cancer, probably hope it doesn't come up at all. I can certainly appreciate that, and I don't think one approach is necessarily better than the other -- it's an individual thing. Aloha, Ned