recce101

I think it would, but only if the malignancy is large enough to register on the PET. The pulmonologist may be able to give an opinion about any possible connection between the lip cancer and the area of interest in the lung. Small cell carcinoma is frequently associated with the lung, but that's not to say there's any connection here. I have no personal experience with small cell, so maybe I'm barking up the wrong tree and there's no connection at all -- it's just a question I'd want to ask as a curious patient. While waiting for the appointment you might consider presenting your situation to Dr. West at onctalk.com to see what he has to say. Aloha, Ned

Frank: One thing I don't recall you mentioning is, what is the specific type of cancer that was removed from your lip? A follow-on question would be, is that a type that tends to metastasize, and if so, where? Maybe those answers have something to do with the "99% sure it's not cancer" statement. We have a number of "nodule watchers" in the group. I doubt if any of them can give you a magic technique that will eliminate your anxiety. It's human nature to worry, even when we know it's not productive. Maybe the pulmonologist can give you a more complete picture of the situation so you can focus on the half of the glass that's full. Actually, in your case, the full part is probably well over half -- maybe three-quarters or seven-eighths or more! Aloha, Ned

A case could probably be made that as long as the malignancy isn't growing, the chemo is working -- "stable is good." If that's the situation at the end of 6 (or whatever) cycles, then the decision whether to continue the same treatment depends largely on the side effects issue, as you said, and the patient has an input there. Another question would be, what other treatments are available that have a decent track record as a second-line therapy? The answer to that would affect the decision to milk the current treatment for all it's worth or switch to something else. I don't know that much about small cell to offer an opinion -- that's where Dr. West comes in. Concerning your exercise program, have you noticed that little muscle strains that previously resolved within a few days now take a lot longer to heal and tend to accumulate rather than work themselves out? If not, that's great, and I'll spare you a long discussion of my experience, which might be unique to the Avastin which I received every 3 weeks for a full year. That problem is slowly fading now that I've been off Avastin and on Tarceva for 2-1/2 months. Aloha, Ned

Hi, Starr: It's good to hear you're still doing well. If you haven't already, I urge you to visit onctalk.com. There's a wealth of information there, primarily 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 have "dual citizenship" so to speak, and use the same usernames there as here. One OncTalk article you may find of interest is here: http://onctalk.com/2007/01/17/duration- ... ng-cancer/ If you check the Subject Archives under SCLC, you may find other articles that are of interest. You can find a list of Q&A Discussion Forum posts by entering SCLC in the Search box on any page. If those items don't answer your question, I believe it would be useful to present your situation to Dr. West and see what he has to say. Of course he won't give you specific medical advice, but he will do a great job of explaining all the pros and cons of various approaches in situations like yours. Best wishes and Aloha, Ned

The best to you, Pup -- you've had a rough year. Hope you can get some rest over the holidays and that 2008 will be better for all of us! Aloha, Ned

Hi, Antonella, welcome! I'm glad to see Christine rescued your post from another topic thread and created a "New Topic" for your question. Weight loss (though not loss of appetite) is a fairly common early symptom of lung cancer since the tumor causes various changes in the body that cause it to burn calories faster than normal -- so even if you're eating the same as before, you may lose weight. The trouble is, many of us have been trying to lose weight for years, and we're overjoyed to find that our efforts are finally paying off, then comes the bad news. But loss of appetite, nausea, and weakness are not commonly associated with lung cancer initially, and I think there's a good chance something else is going on too. Weakness and shortness of breath (we call it SOB) can be caused by a large pleural effusion (fluid outside of the lung preventing it from expanding out to the chest wall), but that would have been obvious on your CT scan. Nausea and loss of appetite can result from some cancer treatments, but that doesn't fit you either. The good news is, your stage IA lung cancer should be very treatable and is quite likely curable. Best wishes and Aloha, Ned

Frank: Good for your GP. Let us know what the radiologist says on his CT report, but expect that he will hedge his words too. A pulmonologist may be next. Best wishes and Aloha, Ned

Hi, Phil, welcome to the LCSC! Congratulations and a heartfelt thank-you for your activism. A number of us have "triple citizenship" so to speak -- here, LCA, and OncTalk. I hope you'll post often. Aloha, Ned

Unless you WANT to be offended...heh heh! Aloha, Ned

Your sister is certainly fortunate to have you and your expertise on her side, and I hope she does join the group as you suggested. I've also been following your exchange with Dr. West on onctalk.com. Best wishes and Aloha, Ned

Hi, Val, welcome to the group! You've certainly come to the right place for information, support, specific coping tips, and even venting when needed. We are not judgmental, and there are no dumb questions. You have exactly the right idea about managing the disease as a chronic condition and not being dismayed over the inoperable, incurable part. In fact, I wrote a rather personal item titled "Thoughts on incurable, inoperable" in September 2006, shortly after my IIIB diagnosis. You might find it of interest: http://lchelp.org/l_community/viewtopic ... highlight= Please give us as much detail as you can so we can tailor our responses specifically for you. We have a vast number of been there, done that folks in the LCSC covering the gamut of lung cancer subtypes and treatments. To save yourself a lot of extra typing every time you post, you can put the details in a "profile" of symptoms, diagnoses, treatments, test results, etc. like you see at the bottom of our messages. Here's how: 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. My best wishes and Aloha, Ned

Way to go, Connie -- you're amazing!! I wonder if the surgical team is recovering as well? Aloha, Ned

Dick: If Ensure (and presumably its clones like Wal-Mart's Equate) are out of the running, how about Carnation Instant Breakfast? It comes as a powder in several different flavors which you can mix in whatever type of milk you choose. The taste is considerably different from Ensure. Good luck and Aloha, Ned

Hi, Michele, welcome to the LCSC! Please don't hesitate to ask questions. There are no dumb questions! In my 15 months here I have NEVER seen a snippy or condescending answer from a member of this group -- it simply isn't done. After you've browsed the sites Muriel mentioned, I suggest you visit onctalk.com. There's a wealth of information there, primarily 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 have "dual citizenship" so to speak, and use the same usernames there as here. You'll soon be up to speed and able to help your father more than you can imagine. Best wishes and Aloha, Ned

Sandra: I'll bet they're mighty proud of their mom! Gives them a great example of how to meet a difficult challenge head-on. Welcome to the group. Please give us some more details about your condition in a profile like you see at the bottom of our messages. 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

Yes, no doubt in my mind. Hannah knew I was sick before I got the persistent cough that eventually led to a diagnosis. She would stare at me for long periods without a blink, probably trying to communicate something to me, but it takes two to communicate and I was oblivious. I also know of cases where dogs detected imminent seizures, vertigo attacks, and other such events before they happened, and then took action like moving next to the persons if they were standing, or preventing them from getting out of a chair if seated. Many or even most dogs can probably detect these subtle changes, but some are much better than others in doing something about it. Thanks for the post -- what a wonderful species. Aloha, Ned

Bunny: I saw your question and Dr. West's response in OncTalk just now. Here's the older article that I was thinking of: http://onctalk.com/2007/01/18/duration- ... ine-chemo/ Aloha, Ned

Hi, Teresa: From your description and from what the nurse said, I believe the fluid is not IN the lung, but in the space between the lung and the chest wall (the "pleural space"). A collection of fluid there is called a pleural effusion, and if the amount of fluid is large, it can prevent the lung from expanding sufficiently, leading to shortness of breath. It can be caused by the cancer, by infection, or a number of other things. Look through these two articles in OncTalk -- they should answer most of your questions: http://onctalk.com/2007/03/17/intro-to- ... effusions/ http://onctalk.com/2007/03/18/mpe-managment-options/ I see your dad is currently staged IIIA. If he is found to have a malignant pleural effusion (MPE), he would be staged IIIB according to the current staging guidelines (that's my situation as you can see from my profile). The "incurable" aspect doesn't really cause me any concern -- I expect to handle this as a chronic condition along with some other incurable things I've been dealing with for years. Best wishes and Aloha, Ned

I seem to remember a discussion on OncTalk about that several months ago. As I recall, there was no clear data pro or con, but Dr. West thought it made sense to back off the Tarceva before the cancer has become resistant to it -- save it for when it's definitely needed. There was a technical discussion about a particular gene or factor or process or something... If this discussion doesn't show up when doing a search for tarceva, it might have been attached to one of his "Posts" (which are listed in the "Subject Archives" and "Monthly Archives" sections). I believe the OncTalk search feature currently covers the "Q&A/Discussion Forums" only, not the Subject Archives and Monthly Archives posts. A Google search can be configured to limit the results to a specific site, for example: site:onctalk.com tarceva and this DOES cover the posts in the archives. When I get some free time later today I'll see what I can come up with. A couple of years down the road I might be asking the same question (hopefully ). Aloha, Ned

Good show, Sally -- I didn't think you'd be down for long!! Aloha, Ned

Great news, Jim!! Happy Holidays and Aloha, Ned

Sundi: Of course more information is better, but if there's no insurance coverage and cost is a major factor (as it usually is), this question should be asked: Could the results of a PET scan change the treatment that's currently being planned? If your mom is already scheduled for systemic treatment (chemo), then the answer is probably "no" -- discovering via PET that there is a suspicious area somewhere else in the body would probably not change the treatment, since that possibility is already being addressed by the chemo. The bone scan is a different matter. If a bone met is found, it might be treated by localized radiation as a side issue, to reduce the possibility of a load-bearing bone fracture or to minimize pain in a specific area. If you look through my profile below, you'll see that I didn't have a PET scan until October 2007, after I'd completed a full year of treatment for NSCLC IIIB (4 months Taxol/Carboplatin/Avastin plus 8 months Avastin alone). I have standard Medicare, supplemented by Tricare as a military retiree. This is just my opinion. You may get others. Best wishes and Aloha, Ned

Here's a list of what I'm using at the moment (subject to change, of course): Shower: Two main criteria for a soap/body wash are (1) moisturizing and (2) fragrance free. Since my chemo days I've been using Dove Body Wash (Sensitive Skin). No vigorous scrubbing with either washcloth or towel. Shampoo: For what little hair there is, I alternate between T/Sal Therapeutic Shampoo and Johnson's Baby Shampoo. When the T/Sal is gone I'll probably use just the Johnson's, but follow up with Longs Scalp Relief (a clear, nongreasy liquid with the same active ingredient as T/Sal -- salicylic acid 3%). I apply it with a small piece of folded paper towel after the hair is dry. Stings for a couple of minutes if the scalp is tender, but gives hours of comfort. If you don't have Longs in your area, there are other scalp relief products that should work to relieve itching and flaking. After shower: Apply Cetaphil Moisturizing Lotion to exposed areas -- face, neck, arms, etc. -- and to any other areas that are feeling dry or itchy. If much sun exposure is expected, supplant or supplement with a high quality sunscreen such as Blue Lizard (product of Australia). Topical medication: Apply Clindamycin Phosphate 1% gel to any pustules within the rash area. Avoid applying it to a large area, as it's rather drying. Systemic medication: Doxycycline 100mg tablets. Nails and fingertips: As a preventative, rub Vaseline, Bag Balm, or some other lubricant into the ends of the fingers and edges of the nail. If inflammation or splitting occurs anyway, stop the lubricant and apply Cordran (Flurandrenolide) 4mcg per sq cm tape over the inflamed areas. The tape can be cut and shaped to fit over the entire fingertip if necessary. A great product, far better than the Mupirocin 2% ointment plus band-aids and/or finger cots that I used unsuccessfully for a month. Instead of a dose reduction, you might ask about stopping the Tarceva for 3 or 4 days, then resuming the 150mg dose. From what I've heard, the skin problems generally clear up rather fast if the Tarceva is stopped and may come back in a milder form after it's been resumed. The links I provided in the other post have more things you can try. Good luck and Aloha, Ned

Dr. West has a current discussion on the Tarceva rash at: http://onctalk.com/2007/12/07/lacouture-rash-mgmt/ He also gives a link to an excellent CME program on the subject: http://www.cmediscovery.com/EGFR/index.html I've been on Tarceva since Oct. 10 and have been doing a lot of trial and error myself. Later this evening I'll post a summary of what's worked for me so far, but you can get some great info from the CME link -- streaming video, mp3 audio, transcript, or all three. Aloha, Ned

As Missy said, the lack of symptoms is one of the big problems with lung cancer -- it's easy to not realize anything is wrong until you're at an advanced stage. I'd say that general good health enables one to better withstand the stresses of chemo/radiation, and a person who is still feeling relatively well under treatment and doesn't have to take treatment breaks may have a better outcome. Feeling well also helps one have a positive outlook, and that's a big plus too. I'm sorry to say that I'm too lazy this morning to do a search for your previous messages to get more background on your mom's specific condition and treatments. Maybe you could use some of that free time that's so much in abundance this time of year and copy-paste some of the background info a profile/signature block that will automatically attach to your future messages (old ones too if you click "Edit" and check the "Attach signature" box). Best to you and your mom with Aloha, Ned