recce101

Heather -- that's great news! Next thing you know you'll be finding that card, then you should take the rest of the week off... Aloha, Ned

This guy agrees with Lori's John and you ladies. And the idea of helping him avoid trouble with the new wife sounds like a good approach (you might not even need the other shoe)... Aloha, Ned

Hi, Heather! Glad it all worked out. This morning I told my wife about your predicament and my suggestion, and she thought the homegrown card was a good idea but the "something interesting" out of the trash was a bit over the top. So if you didn't do that part, it's probably just as well. I would have thought it cute and put it in my "keeper" box, but I've heard that not everyone is like me... Standing by eagerly for your next predicament with much Aloha, Ned

Any time I see tylenol (acetaminophen) and liver in the same message, alarm flags go up. About 10 years ago my mother-in-law, who was living with us, was in a lot of pain from a compression fracture and was taking a number of prescription meds for that and other problems. She developed dementia, which steadily became worse and worse until she was hospitalized to prevent self-injury and to investigate why her liver test numbers were so far out of whack. It turns out that she had continued to take OTC tylenol, which combined with the acetaminophen in one or two of the prescription meds to put her well into the zone for risk of liver damage. After a period in acute care she improved to the point that she could be moved into long-term care. After several months she regained most of her mobility (with the help of a three-wheeled walker, a marvelous device) and all of her mental faculties. She's still living with us at age 92, still has minimal mobility, and is fine mentally. Although your mom's mental and physical problems might be due to the cancer alone, there could be other factors too as your question implies. I suggest you find out how much OTC tylenol your mom is taking, what else she's taking that you might have overlooked, then ask your pharmacist to plug that data into his computer along with all her prescription meds and see what sort of drug overdose/interaction warnings pop out. Best wishes and Aloha, Ned

Heather: Write him a note on brightly colored paper expanding on the above, and include something interesting you found in the trash. He'll treasure that more than any store-bought card! Aloha, Ned

I believe the simulation you mention relates to the radiation, not the port. My port was tested during the implant surgery and was useable immediately -- the few days' delay before starting chemo was due to the availability of the oncologist I had requested. But while I haven't had or needed radiation as yet, I did have a consultation with the radiation oncologist and his staff. I think they used the term "simulation" when describing a first and rather lengthy session (without radiation) which involved detailed measurements of the body, marks on the skin, and construction of shields for areas to be protected. If that's the simulation you're referring to, it shouldn't have any bearing on when chemo starts as long as radiation can start in the same general time frame. Though I'm a veteran, I haven't had any dealings with the VA medical system myself -- since age 65 I've depended on Medicare/Tricare -- but we have friends who use the VA facilities here and who seem relatively satisfied with their treatment. Maybe your husband needs to get involved again. There should be someone there (maybe the doctor he spoke to earlier) or a veterans ombudsman (often a state employee) who understands the VA bureaucracy and is willing and able to bird-dog this issue until it's resolved. My best wishes and Aloha, Ned

I imagine any competent psychologist could write a book on that question. It's asked after natural disasters, terrorist events, aircraft accidents, wartime losses, and across the spectrum of human experience. Part of the conflict may be that we feel an intense need to celebrate our own good fortune (or lack of misfortune) but are inhibited from doing so out of consideration for those not as fortunate. Another part may be that we don't want to "push our luck." A smaller scale example here on the LCSC forums is what we do after getting a good scan report. We might make a separate post about it and enjoy reading the responses from others, or we may simply make an addition to our profile without bringing attention to it otherwise. I've handled it both ways, and that's probably typical of most members. A lot depends on how we're feeling at the time and what accounts from others -- upbeat versus heartrending -- we've read recently. Every time we deal with this conflict we make a small but cumulative adjustment to our "new normal." That's like saying "live and learn," and it's important to do both. Aloha, Ned

Suzy, I really don't have an answer for you on the liver enzymes. Every 3 weeks when I go in for chemo I get a blood test first thing, and when the onc comes into the exam room he's looking at the printout from the in-house lab, but I don't know what if anything it says about the liver. He always says the blood test numbers are good, and I've never asked for a copy. I'm a lot more inquisitive when it comes to scan reports. About the cold, yes, I've been noticing it too. Don't know if it's from the chemo or just the fact that I've lived here 35 years and am accustomed to warmer weather than we've had recently. If it gets below 60 at night, which it has several times this year, I certainly feel it. All right, I'm not expecting any outpouring of sympathy from Montana or New York -- I have a daughter in Michigan who's been keeping me informed of the blowing snow and brutal wind chill. She (along with another daughter who alternates between Florida and Tennessee) is coming out next month, usually Hawaii's coldest month because of the northerly winds. But I know they'll be dashing about the island in shorts and bare feet, looking funny at their hairless dad bundled up in heavy jacket and hood! Aloha, Ned

Missy ROCKS!! Aloha, Ned

Suzy: A good place to start would be the websites of the major cancer centers such as M.D. Anderson (www.mdanderson.org) and Sloan-Kettering (www.mskcc.org). Aloha, Ned

Hi, and welcome to the LCSC. In spite of a 2+:1 age difference and some minor details such as gender, our situations have a lot in common (see my profile below). My latest CT scan was after 6 cycles of Taxol/Carbo/Avastin -- the masses/densities/lesions had stopped decreasing while the side effects (primarily from Taxol) had continued to build, bringing me to a point of diminishing returns. As I understand it, for patients who have good early results from this combo therapy (e.g., you and me), the crossover of no further response to the chemo but steadily increasing side effects commonly occurs after 4 to 6 treatment cycles and signals the need for a change at that point. In my case the onc recommended stopping the Taxol/Carbo but continuing the Avastin at 21-day intervals, in hopes the Avastin would at least keep things stable for an extended period while I recovered from the toxic effects of the other two drugs. Other possibilities included switching to another IV drug such as Alimta or to an oral medication such as Tarceva. But we'll be holding those options for later, when and if follow-up scans show the cancer has started to progress on the Avastin-alone treatment. In your case, the choice of Tarceva makes a lot of sense because you're in a patient group (female never-smoker) that's had excellent response from Tarceva. You didn't mention your NSCLC cell type, but if it's adenocarcinoma, so much the better. Here's a discussion on Dr. West's onctalk.com website about that: http://onctalk.com/2006/11/18/is-tarcev ... nt-groups/ I'm not familiar with how your pneumothorax relates to the delay in starting Tarceva and what could be done if it doesn't resolve quickly. That might be a good question for Dr. West (he replies very promptly) and would give you good background for your next discussion with your own onc. My best wishes and Aloha, Ned

Hi, Julie: Since your mom is in good health (other than the cancer) and has a positive attitude, I think she'll do just fine on the chemo. I recently finished 6 cycles of Taxol/Carbo/Avastin at 21-day intervals and now am on Avastin only. You can check my profile at the bottom for a description of the side effects I experienced, and as you can see, nausea was never one of them. At one time nausea was a common side effect of chemo, and it brought on all sorts of serious complications such as rapid weight loss and severe dehydration. But today, with new antinausea medications and a proactive approach by oncologists, chemo nurses, and patients, nausea can usually be controlled or avoided completely. It's very important to stay ahead of the game and take the prescribed medications on schedule "whether you need them or not" and to promptly call the onc if a problem is developing. This is not the time to be heroic -- make the call! Though I never needed to call about nausea, I did for a couple of other problems, and I was never given cause to feel I was overreacting or being a nuisance. On the contrary, they seemed to be glad I called when I did so the problem could be handled before it got worse. Aloha, Ned

Wendy -- three cheers for stable!!! Aloha, Ned

Jen, that's great news -- gives us all a lift! Love your photos. Aloha, Ned

Hawaii is go for launch! Aloha, Ned

Hi, and welcome to the LCSC -- undoubtedly the finest place on the Web for lung cancer information and support. While I can't answer your specific questions, I know there are others here who have had first-hand experience, probably as caregivers, with chemo/radiation/dementia issues. Some of them should be answering your post soon. But for the most complete and authoritative answer available, I'd like to point you to one of our professional members, Dr. Howard (Jack) West, a medical oncologist based in Seattle, Washington. Dr. West sometimes answers questions posted on this site (click "Search" at the top of the screen, type "DrWest" without quotes in the "Search for Author" box, and hit your Enter key for a list of LCSC topics containing responses from him), but he spends more of his online time working with his own website, onctalk.com. He actually prefers answering questions on one of his onctalk.com discussion forums, and from what I've seen, posting there will assure you of a very fast response -- amazingly fast for a busy physician. As you'll discover, providing information in this manner carries a very high priority with him. I always check the left-hand column on onctalk.com for new items before coming here, and I'll be watching for your question and Dr. West's answer! Best wishes and Aloha, Ned

I had the same experience with my thoracotomy last year. The medical descriptions and some of the personal accounts I'd read on the Web had me prepared for the worst, but it was a piece of cake compared to my expectations. There was never any pain when I was lying or sitting still, just when I moved in certain directions or had to cough. Even laughing was no big deal! I tossed my Percoset a couple of days after coming home and found that regular OTC ibuprofen was more than enough (I should add that I'm not particularly stoic or blessed with a high threshold of pain). I think a lot of the credit for good surgery outcomes should go to the anesthesiologists and the modern tools/medications available to them. They're an underappreciated group in my opinion, and their preoperative consultation is at least as important as the surgeon's quick visit. Glad you're doing well, and remember that pillow! Aloha, Ned

Hi, Linda, and welcome to the LCSC. I continue to be amazed at the wealth of information, compassion, and support offered in such abundance by the members here. Now that you're a member too, I can see that many will be learning from YOU rather than the other way around. You're what folks in Hawaii would call "akamai," which means something like intelligent, perceptive, or "with it." Your mom and dad are lucky to have you nearby. While you already have an excellent grasp of the big picture, over the next few months you'll probably encounter specific events and situations which have never crossed your mind before, and here's where the other members can really help. No matter what it is, there's bound to be someone here who's "been there" either first-hand or as a caregiver, so ask away! One of my daughters, who lives near Kalamazoo, says winter is really doing its thing out your way. The other daughter is in Florida, which has escaped wind chill and blowing snow in exchange for tornadoes. They're both coming out in April to visit their hairless dad... It's been unusually cold out here in Hawaii too, but I'll spare you the details! Aloha, Ned

Amy: I was reading through your earlier posts just now, and it seems you have a pretty good relationship with your dad's girlfriend. Has she given you any details about the "quality of life" treatment he's getting at home? Has the subject of hospice ever come up? Your dad's pain control may be inadequate, and pain control is a major objective of hospice care, whether it's done at home or elsewhere. With some patients (and others) the mere mention of hospice raises major psychological issues that are difficult to overcome, but I believe it's a subject that must be addressed when quality of life has become the primary purpose of further medical care. It's completely understandable that you're feeling helpless, trapped, torn, and totally overwhelmed. To feel otherwise would not be normal. Your husband probably feels a lot of this as well, being torn between the demands of military service and concern for the family at home -- I can understand that too, having been there myself. All I can suggest is to keep in mind that your main responsibility right now is to your children. The best you can do for your dad may be to work with his girlfriend to ensure he is as comfortable and free of pain as possible. Beyond that, if you can speak with your dad on the phone, tell him you love him, fill him in on the things his grandchildren are into these days, and reminisce about some of the happy, fun, and even embarrassing moments you two have shared in years gone by. You may never get him to "open up to me and tell me the truth" as you put it, even though you both know the truth and figure the other person knows it too. Sometimes putting these kinds of thoughts into words is very, very difficult, and it's not really necessary. Also, he may be hesitant to acknowledge that he's misled you in the past, and that's not necessary either. Neither one of you needs a guilt trip on top of all your other burdens. Have a fun, loving, lighthearted conversation and you might be pleasantly surprised where that leads. My best wishes and Aloha to all, Ned

We're watching the current season (#6), commercials and all. Episode 6 coming up Monday night. Aloha, Ned

Frank, you were the first person to answer my very first LCSC message, just 26 minutes after I posted it in the predawn hours of a quiet Sunday morning back in September. And since that time you've only gotten better in my eyes. This latest project of yours will be a marvelous gift to everyone struggling with lung cancer, both now and in the future. Your words, as always, will be that perfect combination of humor, class, and true grit. They deserve a more secure and permanent place than the hard drive of a discussion board web server somewhere out there on the fringes of cyberspace. Maybe a few community stalwarts can come up with ideas to make that happen. Frank, get those pain meds sorted out more skosh -- you've got work to do! With an abundance of Aloha, Ned

Heather: I just recovered from a 4-to-5-day episode of neuropathy (feet and, to a lesser degree, hands) which began a few days into my sixth Taxol/Carbo/Avastin cycle. The numbness, pins-and-needles, and leg weakness were very different from the sore and itchy rash which has bothered me on and off since cycle 2 and which I still have on my left ankle and calf. [uPDATE 2/2/07: Learned that the calf/ankle problem is not a side effect of the chemo per se, but a more severe version of the stasis dermatitis which I've had in mild form for several years and which recently became worse probably due to lowered resistance, poorer circulation, etc. brought on by the chemo. Dermatologist prescribed a steroid ointment which immediately relieved the itchy soreness and is slowly returning the skin to a more normal appearance.] By the second day of neuropathy I had started using an old walker we had around the house -- the alternative would have been to do a lot of crawling if it continued to get worse! I searched this board and elsewhere on the internet and found some real horror stories about neuropathy. Seems it can start some time after chemo has ended and peak weeks or months later, may or may not go away by itself or even with medication, and can become disabling. I called my chemo nurse (20 years doing this) who said the culprit was most likely Taxol (which I've now completed), that the only drug she's seen work reliably is Neurontin, and that I should call the oncologist to see if he would call in a prescription for me. I reached him at his other clinic, and he agreed to call in a supply of 100mg capsules to my local pharmacy. He cautioned that although the label would say 2 capsules 3 times a day, to diminish the significant side effects of Neurontin I was to take only one of the capsules per day just before bedtime and not increase until we talked or met again. He wanted assurance, almost like Scout's Honor, that I understood this and would comply. I took one capsule that night, got up the next morning feeling about the same, and while the neuropathy was still there, at least it wasn't worse, and instead of getting worse throughout the day as it did the previous day, it was somewhat better by evening. Another capsule, and the next day I was able to get around quite well without the walker, with just mild pins and needles. By the third morning the neuropathy was essentially gone, and I was left with only the "nornal" rash, sores, and blisters to deal with. I'll still take the capsules on the same schedule for a while. Of course it's possible the neuropathy would have gone away by itself without the medication, but having had 6 full treatments of Taxol since October and knowing about the delayed onset feature, I wasn't inclined to take any chances. So my advice, especially if you're getting new and/or worse sensations, would be to call your onc now, even though it's the weekend. That's why they get the big bucks! Aloha, Ned

But if they ever write Chloe out of the script like they did poor Edgar, I'm outta there! Last year I saw an interview with the actress (I forget her name) who plays Chloe. She seems a natural for the part, but admitted she's a complete novice at computers and it takes a great deal of effort to learn all those fast-paced high-tech lines that are a mainstay of Chloe's role. Aloha, Ned

When I run into someone I haven't seen for some time and they see my bald head, or if an old friend (not just an acquaintance) calls me on the phone and asks in a sincere way how things have been going, I steer the conversation toward chemotherapy rather than cancer. For some this is good enough. If I sense they genuinely want to know more but may be hesitant to ask, I'll tell them I don't mind talking about it, it's been quite an education for me, I have lung cancer and it came as a real shock since I quit smoking 43 years ago, but I've learned there are lots of things besides smoking that can cause it and that's happening more and more these days, then end with the clincher "You could have it too and not know about it till next year, because there are no symptoms until fairly late in the game." After they respond (perhaps with only silence) I'll say that there are lots of new treatments available, and cancer, even lung cancer, is not the automatic death sentence that it was just a few years ago. So basically I cut 'em off at the pass and provide some unsolicited education before they have a chance to say anything stupid and insensitive. Aloha, Ned

Hi, Lizabeth: I've had some trouble with my vision the past several weeks -- I'm on my 6th cycle of Taxol/Carboplatin/Avastin. The left eye has developed "dry eye syndrome," which can be caused by chemo and a number of other things. The eye senses it isn't getting the lubrication it needs, so it signals the brain to send more tears, but the tears don't contain enough of the lubricating chemical, so it still feels dry and asks for more tears, and the result is trying to look through a constant waterfall and the inability to focus. This cycle continues until the cause (probably chemo in my case) has been purged out of the system and the body has had time to recover. In the meantime, this condition can be helped to a degree with lubricating eye drops available over the counter in your pharmacy. So if your father is getting a lot of eye watering, chemo-induced dry eye syndrome might be the cause. The excess tears can also cause more drainage in the nasal passages and throat, but there can be other causes for that as well. If you father does not have a lot of tearing, then I don't have any ideas to offer. He might get a better answer when he goes to Sloan Kettering later this month. It's tough to be unable to read when one can't do much of anything else except vegetate in front of the TV. My best wishes to both of you. Aloha, Ned