recce101

Love it!! Aloha, Ned

I don't know what the "standard" is, but I had my bone scan the same day as the brain MRI, both before starting chemo. Aloha, Ned

As you said, it's fortunate that you have a choice about work. Here are some random thoughts to put into the mix: At this point you don't know how your mom is going to do. She could do quite well and need very little assistance from you other than going with her to appointments to lend a second set of ears and to keep on top of what's happening. The initial weeks are hectic with multiple tests and consultations, as you've seen. After treatment starts things will settle down, especially when the radiation phase is complete and she has only the chemo and an occasional scan. Your two boys will continue to need you as much as ever. If you have enough control over your workload, you might consider cutting back instead of stopping entirely. That would keep you up to speed on new developments in the fundraising business in case you want to continue doing this type of work into the future. But, if it's more of a job than a career, and you can make do on your husband's salary, and you're already spread pretty thin, quitting completely probably sounds very attractive. Your own health is important too and has to be one of your considerations. Best wishes and Aloha, Ned

Welcome! I've noticed that a good number of the LCSC forum discussions run off the screen when I'm using my Firefox browser (which I prefer because of security and a few other advantages). But with Internet Explorer they all behave properly, so that's what I use here. Are you using Firefox or one of the other alternatives like Opera? Aloha, Ned

This is great! I hadn't really thought about some of these points before, but looking back to last year when all this was new to me and lots of people were coming by the house, I now understand why I was so much more comfortable with some than with others, regardless of how long I'd known them. I nominate this post for "sticky" status! Aloha, Ned

That's a good point, Karen. If people firmly believed that smoking is THE thing that causes lung cancer, their question or comment would be rather different, I would think. I doubt that you're in any danger of being flamed for expressing such a reasonable view, but if you are, I'll gladly come to your defense! Aloha, Ned

Hi, Shirley: Hypochondriacs are welcome! I think all of us with or near cancer develop tendencies in that direction. I believe genetics does play a role, but I doubt if anyone knows for sure how much. There was no cancer in my family, except my father, who died "with but not from" prostate cancer, not uncommon for guys in their 80s. My advice would be to enjoy life to the fullest, make every day count, be health conscious but not obsessively so, be vigilant about any respiratory problems that come up, push for a chest x-ray and/or CT scan if you're not satisfied (many docs don't even think of lung cancer if a young nonsmoker comes in with a cough or shortness of breath), and realize that with every passing day lung cancer becomes more of a manageable chronic condition and less of a death sentence. Aloha, Ned

At the very end of your profile text you need to close the size tag with . Then the size will actually take effect and the 2 tags will disappear. Your profile will also accept the other formatting tags you see at the top of the "Post a reply" window I'm using right now -- for bold, italic, colors, etc. Aloha, Ned

Ken, go back to each of those previous posts, click the "Edit" button, scroll down and put a check mark next to "Attach signature," then click "Submit." That will do it for each of those messages. For your new messages, that block will be checked automatically if you have "Always attach my signature" marked "Yes" below your "My Profile" input window. And welcome to the group! Aloha, Ned

Hi, Pam, welcome -- that's an amazing story. Please stick around, 'cause we need people like you to sort of balance out the numbers, if you know what I mean! Aloha, Ned

Debi, take all the time you need, and then some. You might even do a few things that are blatantly self-indulgent -- will feel "good" and your core values will not be endangered, I assure you! When you do start to post again more regularly, I don't think you need a "new" perspective as such. Don't limit yourself to comforting the grieving, cheering the depressed, or educating the new and confused. You don't need to respond to every post in any particular category. I see your strength as that of a firm anchor in an ocean of turmoil. Pick and choose where seeds of that anchor might best be planted. My Aloha, Ned

Thanks for the tip, Wendy. I've done that on small areas as a test, and it does seem to prevent the burning-itching I had with the clindamycin alone. So now I put the gel on the worst areas, then put the Vaseline Intensive Care lotion on the other semi-affected or sensitive areas, and finally go back to the worst areas and apply lotion as a second coat. At least I now have a plan. Thanks again! Aloha, Ned

Bummers, Mary, sorry to hear that. It does seem that way too many companies who make such a point of being one happy family and having great employee benefits do a fast Jekyll-Hyde switch when they decide to terminate someone for bottom line considerations. Maybe there's a self-employment opportunity within reach...? Aloha, Ned

Welcome! You've both got a great attitude, which will serve you well. Keep us posted, and maybe do a profile so you don't have to type a lot of background every time you post. Best wishes and Aloha, Ned

Leslie, I'm really sorry you folks are having such a rough time. Let's look at the strictly physical part of the problem first. Getting to and from the bathroom: Do you have a walker that your dad's been using or could use? A wheelchair? In his weakened condition I think he should probably use one or the other, hopefully on a temporary basis. Without one of those for security he might have a (fully justified) fear of falling with the possibility of injury and the certainty of embarrassment. The shower: Is there a seat in the shower, and is everything he needs within reach without having to stand? Grab bar(s) conveniently located? If all those aids are in place, then something else must be going on which might be hard to identify. I'm sure you've considered possibilities such as new brain mets, drug reactions, insufficient oxygen, etc. One thing my dad had was "mini strokes" sufficient to affect his vision and his mental processes without any of the one-sided muscle weakness typical of more extensive strokes. My father-in-law would become totally debilitated (unable to stand, talk, or respond at all) with a relatively small elevation of temperature. Bring it back down a couple of degrees and he was fine again (fine for age 92). And I believe it's common that with some degradation of mental capacity (mild dementia), one of the first things to disappear from a person's radar screen is personal hygiene. Not saying that's where we are, but it's a possibility. Though I doubt if laziness or stubbornness is part of the picture, your comment about "four hours of begging" makes me wonder. All I can do is put myself in his position. If it was clear that I had lost some mental capacity, I would be matter-of-factly escorted to the shower and assisted until finished. If I was resisting for some unknown reason, I doubt if there would be any begging. My sweet wife's eyes would flash and bore laser holes into my skull, and if that didn't work, she'd get the help of our 300-pound neighbor who got frostbite in the Korean War and is still tough as nails (though a real softie when it comes to kittens, puppies, and injured birds). Gosh, Leslie, I don't know what else to suggest. Maybe one sponge bath would cause him to realize the old-fashioned way is best... 2-3 hours later: I read this over after returning from an appointment and thought wow, Ned, those last couple of paragraphs were a little blunt, don't you think? Yes, I guess so, sort of like talking to a family member, but I'm sure you'll take it in the same spirit as given. Aloha, Ned

Hogwash, IMHO. It would be interesting to know who the "researchers" were and to see the full report. And I wonder if the BBC story is an accurate summary of the report. I'm not persuaded. Connie, thanks for the YouTube link. That was really something. Aloha, Ned

Update from previous post above. After a shower last night I used only the Vaseline Intensive Care on my face, neck, etc. Very comfortable sleep. Still have alligator skin, but it's a happy, calm alligator. Rachel, about the straight Vaseline, I also use that on my legs, but for another condition, stasis dermatitis -- which flared up severely when I was on Taxol but is now back to the way it was for years prior to cancer or chemo. Seems to be the best thing for long-term, daily use. Now, about eating. That was becoming very difficult the past few days and my weight was starting to drop. It actually felt like the Tarceva rash was on all the surfaces inside my mouth and covering the tongue. Everything I ate burned if it had the slightest bit of texture to irritate the mouth and tongue. I had plenty of Ensure Plus on hand, which felt good going down, and my wife and son had a simultaneous brainstorm -- put the Ensure in a bowl and mix with a large glob of poi! Now if you've ever tried poi, especially if it hasn't been jazzed up with sugar and other stuff, you probably thought it had the taste and consistency of wallpaper paste. But it's a treasured staple of ethnic Hawaiians and other Polynesian groups (made from the tuber of the taro plant) and it's said to be one of the few foods that could be lived on indefinitely. It mixes easily with anything, and with Ensure tastes really good. Feels soothing, too. So if I'm unable to eat "regular" food, poi and Ensure will see me through! Aloha, Ned

Lenny, that was a wonderful story. Our precious golden retriever Hannah was also 12-1/2 when we had to put her to sleep this past February. I believe she knew I had cancer even before I started the persistent cough that eventually led me to see our family physician. For weeks she spent long periods looking at me intently without blinking an eye, something she hadn't done before to that degree. At the time I thought she knew her own time was limited and was trying to fix my face in her memory, but now I think she sensed something in me that gave her concern. Sorry, can't write any more right now. Aloha, Ned

I'm a strong advocate of second hand exercise! Seriously, I've read about studies where one group of people sits and flexes a particular muscle for a certain period every day for a few weeks, then the increase in muscle size is measured. A second group does the same thing except they only THINK about flexing the muscle, which stays relaxed. The thinking-only group increased their muscle size also, though not as much, maybe a third as much if I remember correctly. It's like observing an extremely active person and saying "just watching you makes me tired!" That article did have some rather curious phraseology, I agree. Aloha, Ned

Hi, Tom: Well, as of now I don't have any answers for you, just questions of my own. I started Tarceva Oct 10, I guess a little after you. Rash (about average), diarrhea (not too bad), and fatigue (unexpected) all came on within a week. For the alligator rash (mainly forehead, face, behind ears), I've been using OTC Hydrocortisone 1% cream with moisturizers, which has been working pretty well. For areas on the face, neck, arms, etc. that don't have a rash but do feel sun-sensitive and itchy, I've been using Vaseline Intensive Care lotion (got that idea from onctalk.com). Neither of these did anything for my appearance, but I was comfortable, and that's what mattered to me. Then yesterday I saw my onc for the first time since starting Tarceva, and he gave me a prescription for Clindamycin 1% gel which he believed would be better than the hydrocortisone. So after a shower with Dove sensitive skin body wash (been using that since doing the Taxol scene a year ago) I put some of the new gel on my face and got ready for bed. It felt pretty good going on, then started to get a little itchy, but I was tired and fell asleep reading. A few hours later I awoke with a raging itch and very tight skin everywhere I'd applied the gel. I quickly washed all that stuff off my face and forehead, which I have to admit did look a lot smoother, and smeared the Vaseline lotion on everywhere that was dry and itching. Quick relief. As an interesting aside, the main side effects listed on my info sheet for the clindamycin are "burning, itching, dryness, redness..." Isn't that what I'm trying to avoid? Go figure!! I wonder if it comes down to a choice between looking halfway decent and feeling comfortable. You already know my preference on that. Let's keep this thread going. Since Tarceva has been so great for so many, let's make it tolerable too! Aloha, Ned

This staging thing is an inexact science at best, and all Stage IV folks are NOT equal, not by a long shot. A number of our own Stage IV and IIIB members are doing very well, better than some who carry the label Stage I or II or IIIA. In the case of Stage IV or IIIB, cancer cells are either known or assumed to have traveled beyond the lung area, so systemic treatment (chemo) is needed and lung surgery or radiation with curative intent is usually not in the cards. Current technology cannot accurately determine if chemo has killed all of those wandering cells, some of which may start to grow somewhere else even after a successful lung surgery. From what I've seen, NSCLC staging is useful mainly towards the beginning, sort of like triage after a major accident, and provides guidelines on what initial treatments are most appropriate (and likely to be covered by private insurance or Medicare). After a while, treatment becomes more individualized. It takes into account the patient's response to previous treatments, and "stage" becomes less of an indication of how "sick" a person may be. I tend to think of my stage in the past tense -- that I was diagnosed IIIB in September 2006, but that's not as important as how I'm doing right now and my treatment plans down the road. Aloha, Ned

Hi, welcome to the LCSC! I've seen your posts at onctalk.com and know that both sites will benefit from your professional expertise and perspective. Best wishes and Aloha to you and to your sister. Ned

First time I've used this response, but here goes: (((((Candy))))) With my Aloha, Ned

Yes, I think so. Every "yes" answer to the smoking question helps the have-never-smoked or the quit-smoking-long-ago person feel a little more assured that they won't get lung cancer. I don't recall ever asking the smoking question directly, but I do remember thinking about it and figuring I was pretty safe. Aloha, Ned

Wonderful advice from some of our best and brightest. And one other thing -- your mom is extremely fortunate to have you as her advocate! Best wishes and Aloha, Ned