recce101

Please see this current article on MSNBC.com: http://www.msnbc.msn.com/id/27283197/ Aloha, Ned

Ain't that the truth! Welcome to LCSC, LadyHarley. And of course we'd like to know a bit more about you. From your username, I'm wondering if you're a biker — we have a few here. Best wishes and Aloha, Ned

Hi, Steven, welcome to the group. I guess you'd say I'm an "ex" Texan — though born and raised and schooled in Texas, I've lived in Hawaii much longer than anywhere else. If you haven't already, may I suggest that you visit cancergrace.org (the previous onctalk.com has been folded into GRACE, Global Resource for Advancing Cancer Education). There's a wealth of information there, especially on lung cancer, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions from people like you and me. A lot of us are "dual citizens" and have the same usernames there as here. My best wishes and Aloha to you and your mom, Ned

Congratulations on another year, MaryAnn! But don't be a stranger — we miss you and your floppy-eared companion. Aloha, Ned

Congratulatons, Katie — well deserved!! Aloha, Ned

Hi, Jenn, welcome to the group. I can't give you any first-hand advice on the back problems, since I haven't been down that road myself (at least not yet). I see Sandra has responded, and since you've been browsing the site for a few weeks I'm sure you've read many of her helpful posts. If you haven't already, may I suggest that you visit cancergrace.org (the previous onctalk.com has been folded into GRACE, Global Resource for Advancing Cancer Education). There's a wealth of information there, especially on lung cancer, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions from people like you and me. In addition to Dr. West, there is a radiation oncologist on faculty (Dr. Goldberg) who frequently responds to posts. Although they can't give specific medical advice to someone who isn't their patient, they present the various pros and cons and considerations of a situation in a way that can be very helpful. A number of us are "dual citizens" and have the same usernames there as here. Best wishes and Aloha, Ned

Congratulations for making it happen! Aloha, Ned

Tammy, sorry to hear the disappointing news. Do you know the specific cell type of NSCLC? Adenocarcinoma? Squamous? Other? Perhaps the cancer was actively mutating, and while the initial tumor responded well to the first line treatment, the somewhat different cells that were circulating in the blood were immune to that particular chemo and this allowed them to get established in the right lung. There should be plenty of other treatment options available. Aloha, Ned

Sandra! I found Clindamycin 1% gel was very helpful on the red bumpy pustules (clears them up in a few days), but don't use it on the relatively normal skin in between the bumps, since it's very drying. Dab it on the pustules, let it dry for a while, then put your lotion on the smoother areas. Yes, I say go off the Tarceva for a few days. I took a 3-day break, and there was a noticeable improvement after the first day. When I resumed after 3 days it never got as bad as before. Good luck! Ned

Hi, Liz. We have one more thing in common. I'm very familiar with Fukuoka City, at least as it was in the late 1960s — our reconnaissance squadron from Okinawa was deployed to Itazuke Air Base for several months. Many pleasant memories! Aloha, Ned

Marci, I suggest you post your question at cancergrace.org/forums. You should get an answer within 24 hours from Dr. West, or from the radiation oncologist on the faculty, Dr. Goldberg. Aloha, Ned

Molly: I had the same IV premeds that Denise described — Aloxi, Benadryl, and Decadron. Those are rather standard for the Taxol/Carbo combination, and the Aloxi seems to do a good job of preventing nausea in most people. The Zofran is an antinausea medication to take at home. Instead of Zofran I was prescribed Ativan and told to take a tablet the first three nights after chemo even if there was no nausea (which there wasn't), and I followed those instructions the first two cycles. For later cycles I just kept it available, and I never had the slightest tendency toward nausea during or after any of my treatments. The Neulasta injection which Tom and I received the day after each infusion was to boost the white blood cell count. That may be what your grandmother got too and someone misheard red for white. If it was Neulasta, she can expect some deep muscle and bone aches starting Wednesday, adding to the fatigue which is probably setting in about now. Some people feel that more than others and even describe bone "pain," but mine wasn't that bad, and since I had been told to expect it, it didn't cause me any particular concern. I didn't feel the aches so much during the later cycles. Sounds like she's off to a good start. Her energy level should start improving towards the end of the week, then you can start watching for some of the other side effects that vary a lot from one person to another. Many (probably most) people get some mouth and throat irritation and changes in taste which cause difficulty with certain types of foods, and we'll have lots of advice for you if and when that starts to happen. I didn't have radiation, so can't help you with that question. Aloha, Ned

Was 5'10" at my "peak," now 5'9" or a fraction less. Ned

Hi again, Lisa. Many of us have a port. It makes the infusion SO much easier, especially since veins start to get hard to find after being subjected to chemo. It's a simple outpatient procedure, and there will be some soreness in the shoulder on that side for a few days. Mine has been in 25 months, and was used every 3 weeks for the first year. Since then I've been on oral medication and just go into the clinic once a month to have it flushed out with a small amount of saline so it's ready to go if and when needed again. When I was on my Taxol/Carboplatin program, I was told to not get a flu shot since the vaccine gives something like a mild case of the flu, and they didn't want that while I had a chemo-compromised immune system. But I've heard others say the opposite — maybe it depends on the type of flu vaccine that's being given in a particular year. Or it could be the timing, since I started chemo before the annual flu vaccine was available. The day after each of my 6 Taxol/Carbo/Avastin infustions, I received a Neulasta injection to help keep the white blood cell count up to a satisfactory level. My onc did it automatically, but some wait until there's evidence of a low WBC count before giving the shot. Maybe it's an insurance issue — it's a rather expensive injection. Aloha, Ned

Hi, Molly, welcome to the group. Your grandmother certainly has the right attitude for dealing with this unfortunate development, and I'll bet she has plenty of baseball games and dance recitals in her future. I was diagnosed with adenocarcinoma IIIb over 25 months ago, and I figure I'm almost as active as most 73-year-olds without lung cancer. I didn't feel all that great during parts of my aggressive chemo treatment around the end of 2006, but I was never so debilitated that I was bed-bound or unable to do something productive every day. What chemo is she getting? Some fatigue usually sets in the afternoon of the day after infusion, when the premeds (which may include a steroid like Decadron) start to wear off, then after another 2 or 3 days the energy level typically starts to recover. You'll probably have more questions when some of the less predictable side effects start to appear, and no matter what it is, someone here will have experienced the same thing and will have some tips to offer. Best wishes to you both with Aloha, Ned

I found the GRACE thread I was thinking of: http://cancergrace.org/forums/index.php?topic=572.0 Gloria's last post was September 5 and she didn't comment on whether the cooling items helped — it appears some other issues took over the discussion. Ned

A couple or three months ago someone asked about them either here or on cancergrace.org and was planning to place an order, but I never saw an update on the outcome. It sounded like a reasonable idea to me, and I believe the product line included items for keeping the hands and feet cool too. Aloha, Ned

Hi, Lisa, welcome to the group. We've all experienced the shock that you feel, and a lot of us are familiar with the anger part as well. Every few months somebody starts a thread on the unfair stigma associated with lung cancer, the causes and results of the stigma, outlandish questions and comments we've received, and effective ways to respond to those who are both clueless and inconsiderate. We all jump in — smokers, nonsmokers, and neversmokers alike. But since my blood pressure has been behaving very nicely, I will not start that discussion tonight! Just know that we understand. If some of your apprehension about chemo comes from stories of people who had it 10, 15, or 20 years ago, keep in mind that significant advances have been made recently, not only in the chemo drugs themselves, but even more so in the "premed" drugs, both IV and oral, that are now routinely given just before the actual chemo agents are infused. Nausea is not nearly as common as it once was. The one side effect that almost everyone experiences, to one degree or another, is fatigue. This typically sets in a couple of days after the infusion and lasts for maybe 3 or 4 days. On those days each cycle I found an afternoon nap was a must, but throughout my chemo treatment I never had a day when I was completely "out of it" and unable to do something productive. Read some of the personal stories on the board and you'll see that the other side effects vary considerably from one person to the next. The different chemo agents have their own characteristics, so when you find out which ones you'll be getting, let us know and we can be more specific. Your main job right now is to recover from your (soon to be) two surgeries. The better condition you're in when you start chemo, the better you'll be able to tolerate it, and the better you tolerate it, the more likely you'll be to have a good result. The fact that you were a candidate for a lobectomy means there's no evidence the lung cancer has spread beyond your chest and you therefore have a good shot at a cure. The chemo is like an insurance policy, with the aim of zapping any stray cancer cells that were not visible during your surgery and may be circulating in the blood. Best wishes on your thyroid surgery, and keep posting with updates and more questions. Aloha, Ned

That's terrific, Bobbie -- glad you're enjoying life! Aloha, Ned

Hey, Jim, welcome to the group! Congratulations on catching the LC early enough for surgery, which probably means you have a shot at a cure. Let us know what sort of side effects you're getting from the chemo so we can add to our collective pool of knowledge. Aloha, Ned

Dolphins are such amazing creatures -- thanks for the great photos! Aloha, Ned

I've been on 150mg, the maximum standard dose, the entire year — except around week 4 or 5 when I took a 3-day break for bad-to-worse rash. The severity dropped quickly, I resumed the 150mg , and the rash never got that bad again. A good number of people do have their doses adjusted down, like to 100mg, or to 75mg by cutting a 150mg tablet in two, and still get good effectiveness from that dose with much easier side effects. Sounds like you might be a candidate for that. Aloha, Ned

Sandra: I did a search for "tarceva" and "survival" on cancergrace.org and found 13 pages of links to articles on the GRACE site, starting here: http://cancergrace.org/yahoo-search/?se ... al&start=1 Many of these articles discuss significant survival benefits for certain subgroups, such as patients who have never smoked, or patients who have tested positive for specific mutations/markers. The policy which you set in bold in your post may be the best that can be said for the entire lung cancer group when comparing Tarceva with cheaper IV drugs — I just don't know, and I didn't read every article looking for that info. I think the best way for you to get an authoritative, properly phrased statement to support your argument is to post a question to Dr. West at cancergrace.org/forums. This might also elicit a response from Dr. Janessa Laskin, a medical oncologist at the British Columbia Cancer Agency in Vancouver who volunteers time to GRACE. Tell 'em "Ned sent me!" Aloha, Ned

It depends on how much fluid is present. If there's a lot, it can completely obliterate the view of everything else in that location. My first x-ray looked much like the second photo in this article: http://en.wikipedia.org/wiki/Pleural_effusion except my effusion was on the right side and part of my right upper lobe was visible above the fluid. A CT scan provides view slices in three dimensions, so the structures are visible in addition to the fluid. Ned

Judy, my heartfelt condolences on the loss of your friend Jim. It's wonderful that you were able to spend time with him before his passing. Though he couldn't respond, I'm sure he heard you and was comforted by your presence and the stories of your good times together. With much Aloha, Ned