recce101

Past and present Tarceva users: Were you ever prescribed a steroid-impregnated tape such as Cordran tape to treat perionychia (inflammation of the folds of tissue surrounding the nail)? If so, did it work? A recent OncTalk post by Dr. West... http://onctalk.com/2007/12/07/lacouture-rash-mgmt/ ...links to an excellent CME panel discussion (with streaming video, mp3 audio, transcript, etc.) on many aspects of Tarceva rash management: http://www.cmediscovery.com/EGFR/index.html In discussing perionychia, Dr. Mario Lacouture (Department of Dermatology, Northwestern University) states that "one particularly useful item is a tape that is impregnated with steroids. This provides protection against trauma while delivering high-potency steroids." He mentions Cordran tape in the video and audio, though brand names were generally omitted from the transcript. My other Tarceva side effects are now fairly well controlled, but this fingertip thing hasn't been fazed by Neosporin, Mupirocin, tea tree oil, or anything else I've tried. Aloha, Ned

Hey, Missy, thanks for checking in. I think of you often, usually in that snowbunny outfit. And what a cute kid! Much Aloha, Ned

That's what I would have done in your situation. Aloha, Ned

That's great, Lilly! Sounds like you have a good office crew. Aloha, Ned

I see, sort of like saying "you're BAD" when you mean "you're awesome." I was going to say "terrific" but realized that's one too, coming from "terrificus" (frightening or frightful) but now having a positive connotation. Language sure is weird. Aloha, Ned

What, wrong country? Aloha, Ned

Hi, Patti. Super! I left a comment too. Aloha, Ned

Hey, Lilly, make it an event! Go in with a flourish and say "okay, gang, what do you think?" You could even have a friend precede you by a few seconds to announce the new look -- an advance man, so to speak. My Tarceva rash has prompted me to stop shaving, for the first time in my life. One of these days I'll be faced with a situation similar to yours when going to some function where I'm known. But I don't yet have that problem, since Tarceva has everything growing so slowly. So for now and probably a few more weeks I'll simply look scroungy. But it sure feels nice! Aloha, Ned

A few days ago someone was asking about the left vs. right choice and we came up with all sorts of reasons and opinions, but I think the explanation given to you makes the most sense. Good luck with chemo. Let us know how it's going and we'll help you through the side effects. Aloha, Ned

I hope your relationship with Aaron's mom continues to strengthen. What you both do and say from this point forward is the key, and there may be no benefit in discussing the argument. If she brings it up on her own, fine, but if not, you might want to just let it go. Some people, some very fine people, have great difficulty actually apologizing and saying "I'm sorry, I was wrong" about something they've come to realize was wrong and hurtful. Instead, they simply treat the disagreement and the events that led up to it as if they hadn't happened, and move ahead with a better understanding and respect for the other person's point of view. Maybe that describes Aaron's mom. Best wishes and Aloha, Ned

I get dry nostrils quite frequently, occasionally with a small amount of blood. It started when I was on taxol/carbo/avastin last year, then decreased during the 8 months I was on avastin only, and has increased again now that I'm on tarceva. It doesn't seem to be directly related to atmospheric humidity, at least not to a large degree. I sometimes use the nasal saline spray, but seem to get more relief by putting a bit of vaseline up each nostril once or twice a day. Aloha, Ned

Spicy: It was Neurontin (generic: gabapentin). I describe my bout with neuropathy about 3/5 through my profile. I'm still on a reduced dose, and there's still a small amount of residual numbness in the toes but no more tingling or loss of leg muscle control. It's the worst side effect I had with Taxol, and I feel very fortunate that the Neurontin worked quickly for me. I believe supplements can help too, but they probably work slower and may need to be started early for best effect. Also, mega-doses of some supplements/vitamins are said to interfere with the action of some chemos. Good luck and Aloha, Ned

Hi, sweetiegirl, here's another friend on your side! Aloha, Ned

Hi, Starr, welcome to the group! The fact that you've responded well to the chemo with minimal side effects is VERY encouraging. It indicates to me that your body processes are working pretty much as designed, but for some reason they got a little behind in taking out the trash (Google "apoptosis"). They got some temporary help, and now there's good reason to think they're about ready to start handling the job once again on their own. Hence your oncologist's use of the word "cure," a word that is not thrown around indiscriminately in the cancer world, that's for sure. Even though the existing facts in your situation are encouraging, I believe you're viewing them in a "half-empty glass" manner, which is very common and normal at the beginning of anyone's cancer journey. Perhaps you could somehow transition to a "half-full glass" approach to the same facts. Easier said than done? Maybe, maybe not. The mind can do some amazing things. For many, the diagnosis of cancer has served as a wake-up call -- to repair damaged relationships, to live each day to the fullest, to renew friendships and family ties, to help others less fortunate. Some have made such seemingly outlandish statements as "my life didn't truly begin until I was diagnosed with cancer" or "cancer was the best thing that ever happened to me." Bravado and hype? No. Best wishes and Aloha from one who is much better at giving advice than taking it! Ned

Ned (short for my Czech last name), age 74, Hawaii resident the past 37 years. Live in Mililani (Central Oahu). Grew up in Texas, received two music degrees from North Texas State College (now the University of North Texas), entered the Air Force in 1957, stayed in 21 years. Duty stations in Florida, Oklahoma, Georgia, and Okinawa (with deployments to Thailand, Vietnam, Korea, and Japan), then West Virginia and Hawaii. Flew for Hawaii commuter airlines 1978-88, owned and operated a small offset printing shop in Central Oahu 1989-2003, still do some digital (laser) printing in the garage for longtime customers, and handle the website for the Central Oahu Caregivers' Support Group which my wife co-founded in 1997: http://centraloahucaregivers.org/ Married to a local Hawaii girl (Japanese heritage) for 32 years, and we have one grown son living in Hawaii. I also have two daughters from my previous marriage -- one in Michigan, and one who alternates between Florida and Tennessee. Also a granddaughter who is a senior at Michigan State University. The photos show my two favorite airplanes: The first is a picture of me in an RF-101 photo reconnaissance ("recce") jet on a training flight near Okinawa in 1965. These reliable machines took me safely from our Thailand base to various parts of North Vietnam and back 100 exciting times. "Alone, unarmed, and un..." -- well, let's leave it at two out of three. The other photo shows a Cessna 402 belonging to Royal Hawaiian Air Service, where I worked for 8 memorable years. In addition to local residents and tourists, we flew many celebrities -- sometimes on special charters, more often just mixed in with the regular passengers. Our flights were usually "single pilot," and we allowed a responsible passenger to ride in the copilot seat. One day my copilot was Jimmy Doolittle!

My port was placed on the left side, and there was no reason given for the choice. I'm left handed, but I don't recall being asked, so that may not have been a factor. My tumor is in the right lung. There's been no effect on my left side mobility, just a little soreness the first week after surgery. The only accommodation I need to make is to change the position of the shoulder strap when I'm driving, so it goes under the left arm and rides below the port instead of over the arm and riding directly on the port. Maybe not the best configuration in case of an accident, but that's the way it goes. If the port was on the right side, I'd have a similar situation in the passenger seat. I see no reason why they couldn't put it on whichever side you prefer. Aloha, Ned

Hi, Mike, thanks for posting! I don't think I've run into you before, but as a fellow IIIB'er I'm delighted to meet you. Love your picture -- well, not yours so much, but of your beautiful wife. I have very pleasant memories of Thailand from years gone by. Aloha, Ned

Hi, Ken: Keep in mind that x-number of months is an average (median?) for a very large number of people. A few will get no benefit at all and may even be harmed, a considerable number will get somewhere around x-number of months benefit, and another group will get far more benefit and some of them may still be alive when the study ends. Expectations count, so expect to be in that third group! Maybe you can't avoid seeing/hearing the statistics, but with more complete knowledge of how they're determined and who actually needs them (Medicare, FDA, etc.) you'll realize they can't be directly applied to any one individual such as you or me. Aloha, Ned

Roger that, Max!! Aloha, Ned

Hi, Bruce, welcome to the LCSC! Nicole mentioned onctalk.com as an excellent source for the type of information you're seeking. I went there just now, typed "adjuvant" in the search box, and found a number of pertinent items by Dr. West that mention Stage IB in the context of adjuvant chemo: http://onctalk.com/?p=32 http://onctalk.com/?p=829 http://onctalk.com/?p=837 If you register (many of us have the same usernames there as here) you can ask a specific question, and Dr. West will normally answer within 24 hours. Of course he won't give you medical advice as such, but he is very good about laying out the pros and cons in an understandable manner. When you make your decision about the chemo, we'd appreciate hearing about your decision and the factors that led to it. Best wishes and Aloha, Ned

Hi, Brian: I'd say your request is VERY appropriate, and I applaud you for it. With your research on the "did you smoke" question you've probably heard many angles, and they've all been discussed here at one time or another. The motivations for such a question range from a callous "you should have known better" or "you deserved it" through simple curiosity and the inability to come up with a better comment to a perhaps unconscious desire to feel safer -- "Everyone I've asked so far has said yes, and I don't smoke, so maybe I won't get lung cancer." Of course we know that's not true, and it seems to be getting less true every day. One thing that's different about lung cancer compared to many other cancers, and many other serious diseases, is that we seem to be in a fuzzy transition zone between a practically automatic death sentence and a fairly high probability of cure. You can find many examples of diseases that were generally fatal years ago which today can be effectively treated if and when they do occur. This can be said of some cancers as well. But someone faced with lung cancer has a bewildering variety of information thrown at them. They read statistics which are dismal at best. They also read of people who are said to be cured, and others who were already Stage IV at diagnosis but are alive and doing well years later. They read that we're at the point, or almost at the point, where lung cancer can be treated as a chronic but not generally fatal disease. Some day lung cancer may be in the same category as smallpox, typhoid, or early-detected skin cancer, but we're not there yet, and that's what I mean about the fuzzy transition zone. People want to have hope, but it's hard to know if their hope is well founded or misplaced. I believe you'll get lots more comments, and please ask follow-up questions as well. Thanks again and Aloha, Ned

Cy: Your message conveys a great amount of strength along with your very understandable despair. I can only guess how I would have reacted if faced with advanced lung cancer at age 31 instead of 71. We have an increasing number of young never-smokers joining our group. The number seems out of proportion to other new cases, and I haven't heard a reasonable explanation as to why. Perhaps an environmental factor not yet identified? Tarceva has been practically a miracle drug for many, and I hope it does great things for you. Please post as often as you can, and let us know how things are going. My best wishes to you and your family with much Aloha, Ned

Hi, Jackie, I'm really glad you joined our group. I remember reading your daughter's posts about your role in Illinois' Lung Cancer Awareness Month proclamation and how proud she was of you. I'm sure you feel the same about her -- sounds like a wonderful daughter. I hope the Gemzar gets you feeling better soon. The WBR, though necessary, must have sapped your strength -- that plus the unsuccessful pleurodesis. My best wishes and Aloha, Ned

I'm THANKFUL for the simple things in life that I can still enjoy -- things that I used to take for granted and never will again. I'm THANKFUL that I've come to accept the limits that have been placed on me by age, illness, and personal circumstance. I'm THANKFUL for the unconditional support I've received and the understanding, compassion, and perspective I've gained since being diagnosed with cancer. I'm THANKFUL for the Internet, this marvelous website, and all the friends I've met here. I'm THANKFUL that I live in Hawaii where it's still morning on Thanksgiving Day and my dear wife's yummy meal is still a few hours in the future. I'm THANKFUL that my Taxol taste buds have recovered enough for me to enjoy that yummy meal. I'm THANKFUL that my Tarceva fingertips are beginning to heal. I'm THANKFUL that I live in a country where regime change is done peacefully and on schedule. Aloha, Ned

Hi, Nick, welcome to the LCSC! From your well-written post I'd say you have approached your situation in a balanced, intelligent manner and have received excellent medical assistance up to this point. I wholeheartedly agree with the advice of others who suggest onctalk.com as a primary source of authoritative medical information on lung cancer and its treatment. It's the only place I've found where people like you and me can get our individual questions answered by an internationally recognized lung cancer expert, usually within 24 hours. OncTalk complements this site, which excels in emotional support, coping skills, and the first-hand accounts of various treatments and side effects from those of us who have been there, done that. You'll recognize a number of LCSC members over at OncTalk, as we tend to go by the same usernames there as here. By the way, I'm intrigued by your username. Are you a Puccini enthusiast? Aloha, Ned