recce101

I've been sitting here trying to recall the most memorable examples of stupidity directed at me over the years -- not so much about cancer, but in general -- and the thing that struck me the hardest is that I've NEVER been able to come up with just the right response at the time. Oh, a few seconds or minutes or hours later, sure, all sorts of neat comments flow through my head, but by then the moment has passed. So I turned it around and tried to recall (this was much easier, unfortunately) some of the most idiotic things I myself have said to others -- never with hurtful intent, more usually as a little joke that wasn't taken as a joke -- and what responses were most effective in cutting me down to size. It turns out that the most thought-provoking responses, those I'm still thinking about years later, were actually all the same -- total silence, along with a stare of disbelief, followed by a parting of the ways with no verbal pleasantries at all. Next time one of these unbelieveable comments comes my way, my challenge will be to summon enough mental agility to avoid saying ANYTHING that will dilute the effectiveness of my silent stare. Aloha, Ned

Hi, Kerri and/or Patty: I'm glad the first chemo session went well. You too, huh? Now you'll know what to expect and what sort of books/magazines/DVDs/etc. you want to take next time. You mentioned Biotene -- I assume you're talking about the mouthwash. They also make a toothpaste that is very soothing. Even now, over 7 months since I finished the Taxol/Carbo, my mouth is still too tender for the rest of the family's standard Colgate. I think that's because I'm still on Avastin, which really slows down the healing process. A little baking soda mixed in water is also good for brushing. You'll need to stay ahead of the constipation, which many people experience a few days into each cycle. Plenty of fruit and fluids now, before it starts, may help you avoid stronger meds which can take you too far the other direction. It's a real balancing act. At some point, maybe week 2 or 3 of even this first cycle, various foods might become difficult to eat. Everyone is a little different in this -- some find that certain foods, even favorites, start to taste really yuk and even sickening. Others (like me) find that the taste buds and sense of smell essentially shut down, and while nothing tastes "bad," the mouth and throat are so irritated that many of the foods we're accustomed to eating become painful to swallow. With a little experimenting it's possible to find a few things that actually feel good going down -- cold canned fruits, cool or luke warm soups with no solid chunks, milk shakes, ice cream, Ensure, etc. At this point it's more important to pack in the calories than to maintain a perfectly balanced diet -- you won't be on chemo forever. Most people need MORE calories to maintain weight than before, since the body is burning calories faster than normal. A good slogan for this phase is "eat what you want, when you want." Any time you have more questions, don't hesitate to post them. You'll get a better response if you start a new topic thread with a descriptive title each time you have a new question or comment -- if it's buried toward the bottom of this introductory thread many people will miss it. Anyway, you're not a newbie any longer! Continued best wishes and Aloha, Ned

Mary Colleen, I know what you mean. I have the same tendency (some people don't, it seems) to look for a common factor when a couple of unusual things are going on simultaneously, even if one started considerably before the other. I think I've always been that way, though it probably jelled during my years as a military and commercial pilot, which included a mid-career assignment as an Air Force flight safety officer / accident investigator. I thought of myself as the "big picture" guy and felt that specialists, whether trying to fix minor problems on an airplane I'd just flown or whether assigned to help with a major investigation, sometimes focused too exclusively on their individual areas of expertise. On occasion I was wrong and had to accept that two seemingly unrelated but simultaneous conditions were, in fact, unrelated. That's happened once so far in my cancer ride. During the 4 months that my treatment included taxol and carboplatin, I kept a detailed log and was able to detect a fairly clear 3-week pattern of side effects, including a rather troublesome foot rash (probably hand-foot syndrome) that lasted for several days starting the second week of each cycle. Then during cycle 5, a rash developed on the ankle and calf of each leg, and this new rash didn't go away on schedule like the foot rash and other side effects continued to do. It became very itchy with large scaly areas that broke loose occasionally, it seriously interfered with sleep, and none of the medications/lotions I tried helped. My onc didn't recognize it as a chemo-related condition, and he suggested I check with the dermatologist I see periodically for pre-cancerous skin lesions. The skin doc took one look and said "that's just a bad flareup of your stasis dermatitis." He reminded me of the little brown splotches on my calves and ankles that I'd asked about years ago, when he advised me to continue with the diuretic I was already on for Meniere's syndrome and to elevate my legs whenever possible. He attributed the flareup, which resembled the worst of the textbook photos he showed me, to my lowered resistance and reduced circulation brought about by the chemo. He prescribed a potent steroid ointment, I slept through the night for the first time in many days, and my legs were back to pre-flareup normal (for whatever that's worth) in 2 weeks. That's a much-too-long way to express my opinion that (1) you may be right that your husband's recent problem is a byproduct of the cancer, or (2) you may be wrong and it's a completely unrelated thing (as unlikely as that may seem), or (3) you may be half-right and it's an unrelated pre-existing problem that's been off the radar up to now but has finally come into the open because of his lowered resistance, decreased circulation, or the like. Whatever it is, I hope it gets sorted out very soon. It must be doubly discouraging for both of you, since he was starting to do so well. Much Aloha, Ned

I just love UNREMARKABLE! They said my skull and brain were unremarkable when I had my MRI a year ago. I was happy, but my wife said she's known that for 30 years! Congrats and Aloha, Ned

I've seen several people here post about sudden allergic reactions to Taxol, and some of them may have chimed in by the time I finish this. The reason it's given so slowly is to reduce the likelihood of such reactions, but it still happens sometimes. It's said that most reactions are due to the solvent the drug is dissolved in, not the Taxol itself. I guess nothing better has been found that will dissolve the stuff. Those who do have a reaction to Taxol can usually be switched to another drug that is similar in effectiveness but easier to tolerate. I imagine Navelbine is one of them, but I'm not personally familiar with it. Aloha, Ned

Debi, I'm really glad you added your perspective to this discussion. It gives me more to consider, preparing for if (optimistically) / when (realistically) I begin my own downhill slide. I'm wondering if this explanation for your withdrawal is something you realized at the time, or something you didn't figure out until later? Aloha, Ned

Maggie, they must teach that line in medical school. As I was waking up from my exploratory thoracotomy a year ago, the surgeon came in and said "you do have lung cancer, adenocarcinoma, and it doesn't look very good." Within an hour the pulmonologist came in and said "I talked to Dr. X -- did he tell you it doesn't look very good?" Well, that little bit of "information" was not helpful. Our family physician was more upbeat, and he gave my wife a list of 4 oncologists he described as "caring physicians who are up-to-date on the latest treatments." We picked one on the personal recommendation of friends, had a very positive meeting, and I'm still here. Your Dad can be too. Best wishes and Aloha, Ned

There's a similar running joke between me and some of the nurses/technicians at my oncology clinic. I've been going there every 3 weeks for a year, so they know me pretty well by now. When they check my vitals before every Avastin session I usually get comments about my stable weight or normal blood pressure, and I'll say something like "oh, I'm just a picture of health." The first couple of times I got some puzzled looks, but now we all have a nice chuckle. Seriously, being in good general health will serve you well as you go through your treatment program, especially since you'll be getting chemo and radiation concurrently. It will help you tolerate the various side effects without needing to interrupt your treatment schedule, and that will increase the likelihood of a positive outcome. My best wishes and Aloha, Ned

This has been SO HARD to read. When I got to the part where Nova's 14-year-old son gave up football to spend time with his dad... What a wonderful kid. I like what Rich had to say, also Jackie's description of what worked for her situation. Maybe others will post with their ideas on how things might be turned around. Though I'm still doing well, I can tell you this -- if I ever started withdrawing from family and friends, I'd catch holy hell from my dear wife no matter how sick I was. Bless her! Aloha, Ned

Yep, mine too, again, just now... Your words made that possible. Although your mom and I never met, knowing her through you has enriched my life. Aloha, Ned

John: Great oprep -- made me feel right at home! I think you'll feel at home with the Taxol, and I hope it does a good job for you. Rather old-fashioned, nothing fancy, round dials, no digital gadgets, sort of rough around the edges, but straightforward and reliable. A chemo with gusto! Aloha, Ned

Nick, over the months I've read your "Mom's timeline" on at least a dozen occasions, and each time I've come away with an even greater appreciation of how special she was. I'm not saying that just to help you through these next few weeks, but because I seriously mean it. They want me to have a full body CAT scan? Fine, let's make eggplant parm! The CAT and bone scans look bad? Okay, we'll go to the beach and I'll talk parenting with Keri! Radiation? Bring it on, but I can't forget Nick's birthday cake!... Really, I can't read it without hearing Sinatra's classic rendition of "My Way" in the background. Like Sharon, it hadn't registered on me that it was only 30 days. But what your mom packed into those 30 days was nothing short of amazing. With much Aloha, Ned

Hi, Trudy, a big welcome to the LCSC from the "other" Ned! As you can see below, I also have NSCLC IIIB and received the same chemo combination as you. Since February I've been on Avastin alone and feeling better each month. My most recent Avastin infusion was yesterday, and in a couple of weeks I'll have another CT scan to see if it's still working or if we need to go to Plan B. The longer I can stay on Avastin, the happier I'll be. If you know your cell type (adenocarcinoma, squamous cell, etc.) and what factors resulted in your IIIB staging, you might add that to your profile. It's great that surgery may be a possibility. Another site I highly recommend is onctalk.com, which is run by Dr. Jack West, a Seattle oncologist specializing in lung cancer. He's just returned from an international conference on lung cancer held in Korea and when he gets his days and nights figured out will be giving detailed updates on what transpired there. Browse around onctalk.com and I think you'll be impressed, especially with the question-and-answer forums to which he devotes a considerable amount of time. You'll be getting more responses from our mainland friends when they wake up in the morning. Aloha, Ned

Hi, Patty, welcome to the LCSC. There are a good number of people here in the community successfully fighting stage IV, and there's no reason you can't be one of them. Anger is a normal reaction at the beginning, and it's fine for a short time -- just don't let it consume you, and make sure it's not pointed the wrong direction (at loved ones)! You should get excellent answers and treatment at Sloan-Kettering, a highly regarded institution. In the meantime, it would help us help you if you start a "profile" like you see at the bottom of our messages. Will save you a lot of typing in the future. Click on My Profile above, scroll down to the Signature block, enter/update your information, scroll down further, ensure Always attach my signature is marked Yes, and click Submit at the very bottom. Best wishes and Aloha, Ned

Hi, Mike, welcome to the LCSC. I imagine one of the first things to be determined is whether the lung nodules are (1) mets from the kidney cancer or (2) a new primary lung cancer. That's important to know because the cells are different and therefore the treatment is different. The type of cell can be positively established with a biopsy of the lung nodules, but there may be a less invasive way to reach a conclusion on the nodules' origin -- I simply don't know. These would be good questions for the oncologist, and perhaps the nephrologist too. I have read that the lungs are one of the favorite metastasis sites for renal cell cancer, and I believe you are justified in being skeptical of the surgeon's "got it all" statement. She may have removed all traces of cancer that were detectable, but there can be "micrometastases" in the blood that are too small to detect with current technology. Chemo, which is systemic, is designed to zap these cells as well as established tumors. Best wishes and Aloha, Ned

This morning I crawled out of bed around 6:30, and with coffee and roll in hand soon stumbled into our cozy computer den where my wife was already browsing the news on cnn.com. I cranked up my machine against the opposite wall (we're about 3 feet apart back-to-back -- like I said, it's cozy) and when awake enough to talk, I asked, "Do you recall what we were doing on September 1st last year?" Without missing a beat she said, "Of course! You were in the hospital coming out of surgery." Then, a step ahead of me as usual, she continued, "Remember the potted orchid that [our next-door neighbors] brought you later in the day? I've had it in the back yard since you got out of the hospital, and it's been just sitting there all this time because it blossoms only once a year, and guess what -- it's blossoming today! Here, I took a picture, download it from my camera." So I did a composite in Photoshop to email to the neighbors. I don't remember much about the earlier parts of that morning except that I was extremely groggy for a very long time (I learned I'd been under anesthesia for over 4 hours) and I was overwhelmingly thirsty (was told I couldn't have water, but I eagerly accepted the sponge stick and ice chips). I was pretty much awake when my surgeon came in and said, in his pleasant but matter-of-fact way, "You do have lung cancer, adenocarcinoma, and it doesn't look very good." I made some noncommittal response, and he proceeded to check my dressings as we discussed mundane things such as pain (essentially none), medication, breathing exercises, and the like. It wasn't until later in the day that I realized "hey, I'm not worried, I'm calm as can be!" and wondered "what the heck is going on?" I still haven't figured that out, but I do distinctly recall that, as the surgeon was giving me the news, I felt as if I'd somehow shifted positions a few inches and started viewing everything from a slightly different perspective. How weird is that? Since that day I've been completely at peace with my condition and whatever may happen in the future, and I've felt connected with all that exists like never before. But I must say that all of this is internal, and that it hasn't translated into any improvements obvious to others. I'm still thoughtless at times, not very intuitive (very left-brained, for sure), still slow to pick up on new situations, and still unable to cook without a recipe (it's like when I was studying music in college -- I could sight-read better than practically anyone but couldn't jam or ad-lib at all). So what's there to say? Instead of trying to make sense of it all, I should probably just admire the orchid. Aloha, Ned

Hi, and thanks for the update! It's good to hear that Char is doing well in her taxol/carbo/avastin program. As she moves through the cycles you'll start to notice a pattern developing, especially if you keep a daily log. Occasionally I look back over mine for old times' sake, as it were. After a month on Avastin alone I stopped keeping daily notes -- nothing to say except that the taxol/carbo side effects slowly disappeared as time went on. Best to you both! Aloha, Ned

Mary Colleen: I know of one person who was receiving radiation for cancer of the esophagus, a pretty tough guy with plenty of willpower, who became unable to eat or drink because of the taste ("mixture of turpentine and lye") as well as pain. He had a feeding tube inserted through his abdomen which he used for a while, until able to eat normally. From his description it wasn't a big deal, it wasn't noticeable under his clothing, and it kept him nourished through this phase of his treatment. Here's an article with a good description and photos: http://www.oralcancerfoundation.org/den ... eeding.htm Hopefully your husband's problem can be resolved without resorting to this, but it's something to keep in mind. Best wishes to you both. Aloha, Ned

I agree, this is sort of an odd situation. Maybe the explanation you were given was too sketchy for you to have a good understanding of all the factors. Lots of us could "manufacture" scenarios that might make sense, but we'd have to make some assumptions that may or may not be valid. For example, I might offer that perhaps the resection was done with a minimally invasive scope procedure (video-assisted thoracoscopy) for diagnostic purposes only, pathology confirmed cancer and also concluded that some cancer probably remained in the lobe, your team believes that removing the lobe is now advisable, and at the same time that's done the lymph nodes can be evaluated for more accurate staging. That scenario might be totally off the mark, but it's probably less of a stretch than their wanting to remove the rest of the lobe "just so they can check out" the lymph nodes! So essentially I'm hitchhiking off of Donna G's post, and I agree with Tom K's recommendations. You deserve a full explanation of what they've done and why, plus all of your options from this point forward. If they can't or won't do that for you, get a second opinion -- true, that can be a hassle, but it's your life we're talking about. And never forget that these guys are working for you, not the other way around! My best wishes and Aloha, Ned

The relatively small percentage of cancer research funds devoted specifically to lung cancer doesn't really bug me that much -- the "rising tide lifts all ships" principle seems to apply pretty well here. My personal favorite example is Avastin, which was developed for colon cancer. Once a drug is approved by the FDA for a particular purpose, physicians are permitted to prescribe that drug for other conditions. There can be problems with private insurance coverage, but (from what I've seen) Medicare coverage policies are fairly enlightened and consistent with treatment guidelines of the various medical specialty professional organizations. Here's more on off-label use from Wikipedia: The smoking stigma is another issue -- I'm trying to make my own little dent one person at a time. Aloha from Ned

***Your Brain is 47% Female, 53% Male*** Your brain is a healthy mix of male and female You are both sensitive and savvy Rational and reasonable, you tend to keep level headed But you also tend to wear your heart on your sleeve Aloha from Ned

Hi, Chesney: Here's a good article on Alimta by Dr. West along with some discussion: http://onctalk.com/?p=274 You can also use the Search box on practically every page of the onctalk.com site and get a long list of posts regarding Alimta. When I was on taxol/carbo I had Neulasta injections to boost the white blood cell count, but not Procrit, which does the same sort of thing for red blood cells. I'm sure lots of people here have had Procrit and can answer your questions on that. You can also use the LCSC search feature -- click Search at the top of the screen, type "Procrit" in the top box, change Display results as to "Posts," change Return first to "All available," and click Search. Best wishes to you and your mom. Aloha, Ned

Hi, Mendy: Boy, I really sympathize with your husband -- shingles plus a construction engineer job in horrendous heat! I hope those both get resolved in a hurry. Aloha from Ned

Candy, that's great. I'm sure that meant a lot to her -- I know it would to me. Aloha from Ned

Hi, Chesney, welcome to the community! It's not uncommon for a parent with cancer to want to "do it alone" and shield their children from the details. Their intentions are the best, wanting to spare their offspring inconvenience and disruption to their own lives, but (as in your case) it often has the opposite effect. In spite of that, your grasp of the essential facts is quite good, so your mom must be willing to share a lot of the details with you and just doesn't want to dwell on the subject. And from what you're written, she seems to be getting excellent medical evaluation and treatment. I think this past week you've been suffering from a condition familiar to all of us -- one of our members came up with the perfect word for it, SCANXIETY. Please let us know what you find out today. You know what? I just realized that my oldest daughter is within a year of your mom's age! How do you think that makes ME feel?! My best wishes and Aloha, Ned