recce101

Hi again, Deb: Let's hope the Avastin continues to work for you. I was on it a total of 12 months -- 6 cycles (4 months) in combination with Taxol/Carboplatin, then 12 cycles (8 months) of Avastin alone. The 8 months on Avastin alone were like a vacation, as all of the side effects I had experienced with "Toxic Taxol" gradually disappeared. My hair even grew back after a while. The only down-side I could pin on Avastin was generally slow healing (that's part of its mechanism and probably can't be avoided) so any skin abrasions would take a long time to heal. The same was true of muscle strains -- if I pulled something doing exercises or moving stuff around, the little twinges would accumulate rather than resolving. Now that I've been off Avastin for 4 months (Tarceva instead), these little muscle problems have gradually gone away and my right shoulder range of motion is about where it was before this all started. When Avastin started to run out of steam last summer it was very subtle, and when we eventually switched to Tarceva in October, my lung tumor was still smaller than it had been at diagnosis. I'm definitely an Avastin fan, and I hope to become a Tarceva fan too. They're both made by Genentech -- I wonder if they have a PR position open? Maybe I'll see you at the chat session later today (8:00 your time, 3:00 here). I have a computer array in my garage workshop along with remnants of a printing business that we used to have in a nearby town, but I'm frequently rushing to complete jobs that time of day and miss the chat. If I close this down now and get out there, there's a chance I'll be finished by 3:00. Aloha, Ned

Hi, Deb: Like Randy and some others, I also read your whyquit.com blog. What comes through to me the most is your genuine concern for others in spite of everything on your own plate, and the lack of any "why me" self-pity. You must be a very strong, well-balanced person. But I also get the feeling that you're being too hard on yourself: Without downplaying the harmful effects of smoking on oneself or those nearby, let me just say that you don't know for sure, and you may never know for sure, that smoking is what caused your lung cancer. Genetics and environmental factors also play a role, sometimes the predominant role. That's especially true for adenocarcinoma, which has been called "non-smoker's lung cancer." I was diagnosed with adenocarcinoma (stage IIIB) 16 months ago, 43 years after I quit smoking. We have members who never smoked but got lung cancer (usually adenocarcinoma) in their late 20s and early 30s. Realistically, if you had quit smoking as a young adult, or never started at all, you would have improved your odds but could not have been guaranteed that you would never get lung cancer. This OncTalk discussion has some good info: http://onctalk.com/2006/11/21/do-never- ... t-disease/ I doubt if my saying this makes you feel any better right now, and I debated for a long time whether to write anything other than a general welcome to the group, but I did with the hope that you can stop beating up on yourself so much and direct some of that scarce energy to a better purpose. My very best wishes and Aloha, Ned

I asked my oncologist about the sugar issue during my first visit (September 2006), as I had read and heard those same "feeding the cancer" stories. He said that concept is widespread, and while he didn't go so far as to call it a "myth," he did say there's no convincing evidence to support it and that he recommends maintaining a normal balanced diet as much as possible. Of course we could argue about what constitutes a balanced diet, and how much sugar and especially refined sugar is too much. Here's a good OncTalk exchange: http://www.onctalk.com/bbPress/topic.ph ... 5#post-907 I wouldn't be much good to anyone without my nightly ice cream fix! Aloha, Ned

Hi, Rebecca, welcome to the group! I'm another IIIB, as you can see from my profile below. If you can give us some details about your dad -- general health, symptoms that led to the diagnosis, results of various tests, treatment planned, etc. -- our members with first-hand experience as patients or family members can give you a better idea of what to expect. Cancer staging is based on a set of very specific clinical findings and has little to do with how "sick" a person appears to be at any particular time. Some Stage III or IV patients are far more capable of caring for themselves and others than some Stage I or II patients. What I'm trying to say is this: IF your dad is in good condition now except for the cancer, don't assume that the IIIB diagnosis means he is likely to go downhill rapidly. He may respond well to treatment and be able to manage the cancer as a chronic condition for a long time or even indefinitely. Cancer treatments have come a long way in recent years. Best wishes and Aloha, Ned

Glad you have good rapport with your rad onc -- that should be very helpful! Good luck with your treatment. Aloha, Ned

Hi, Sharon: Have you tried any of the over-the-counter scalp relief products at your local drug store? I've had good results with Longs (our local store brand) Scalp Relief, a clear nongreasy liquid that contains Salicylic Acid 3% as its active ingredient, the same active ingredient that's in T/Sal Therapeutic Shampoo. I wash what little hair I have with Johnson's Baby Shampoo and follow up with the Scalp Relief after the hair and scalp have dried. The first couple of times I used it my scalp was red and tender, so there was a pretty good sting initially, but it quickly subsided and gave me several hours of comfort. Now the tenderness has cleared up, so I just use it when the scalp starts to feel dry and itchy, and there's essentially no sting. I drip the liquid onto a small folded piece of paper towel, then pat it on and rub it in. I also take oral Doxycycline, and I put Clindamycin gel on any new red bumps that appear here and there -- but haven't used it on the scalp. One night when I was fairly new to Tarceva (before I had the scalp relief liquid) I developed a horrendous itch which I finally got to subside by rubbing in a large quantity of my regular skin moisturizing lotion. Of course it made quite a mess, so I spent the rest of the night in a recliner protected by paper towels, and it took a long time to wash it out the next morning, but at least a got some sleep. I bought the scalp relief product later that day. Hope you find something that works! Aloha, Ned

A pneumothorax (trapped pockets of air in the pleural space) could be dangerous, because in the event of pressurization loss they might expand to the point of collapsing the lung. I had this for several months following my thoracotomy, but now with just a small loculated pleural effusion I'm considered good to go. Aloha, Ned

Wonderful, very encouraging! Aloha, Ned

Thanks for posting that, Randy -- so much meaning and relevance! Aloha, Ned

Hey Ken, me too! Aloha, Ned

It's "the South" for me, which I guess makes sense since I grew up in Texas -- though after a few years in the Air Force most people thought I was from some anonymous place in the Midwest. Today when I watch the network news I swear I talk just like one of those accent-neutral announcers, but whenever I hear a recording of myself that subtle southern drawl is very apparent! That was a very good test. Aloha, Ned

Hi, Nikky, welcome to the LCSC! Now that your dad has finished "first line" treatment, what happens next will depend on the results of periodic scans (usually CT and/or PET). They will be compared to similar scans done before and during treatment to determine whether or not the malignant areas are growing ("progressing"). When and if that occurs, depending on his general health, he may be offered a "second line" treatment with another drug -- one to which the cancer has not developed resistance. This process can continue into third line, fourth line, and beyond, as you can see from some of the treatment profiles attached to our messages. If you can start a profile on behalf of your dad, giving his specific treatments, scan results, etc., we can perhaps give you a better idea of the possibilities. 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. From now on, your profile will attach to every message you send. Best wishes and Aloha, Ned

That's great to hear, Suzy! Aloha, Ned

Hi, Corinne -- welcome to the group! There's no better place for overall support plus first-hand accounts of various conditions and treatments from the patient's perspective. When you get a diagnosis and treatment plan and start to have more technical medical questions, 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. Dr. West has just announced that a Canadian lung cancer specialist, Dr. Janessa Laskin of the British Columbia Cancer Agency in Vancouver, has joined OncTalk and will also be available to answer questions. Best wishes and Aloha, Ned

I normally use the Firefox browser, but on the occasions I've used Microsoft Internet Explorer I've had a similar problem. Whenever I used the "back" or "forward" button it was a tossup whether I would return to a page I'd previously typed or whether I would see a new blank (wiped out) form. The solution for me if using Internet Explorer was to right-click links and choose "Open in New Window" OR first open a new duplicate window (CTRL-N) and proceed from there. Glad you're getting some of the financial issues sorted out. We middle-classers seem to get the short end of the stick lots of times. Aloha, Ned

Hi, Cynthia, welcome to the group -- I also read your post in the "Introduce Yourself" forum. I'm probably not the best person to answer your questions, but I may be one of the few members awake at this hour (I'm in Hawaii) so I'll make an attempt. By morning you should have other responses which will fit your situation better. If you have no siblings closer to your mom that you can count on to help, the best choice may very well be moving her to California to live with you. And from your other (longer) message, I get the feeling the sooner the better. Getting her to agree to the move might be difficult, especially if she has a lot of personal ties to her Texas home, but you could be pleasantly surprised. We moved my father from Waco to Hawaii after my mother passed away in 1995, and it was easier convincing him to come than we had expected. I don't have any personal experience with GemCarbo, which is shorthand for the "doublet" treatment Gemcitabine (trade name Gemzar) plus Carboplatin. Here's a fairly detailed reference... http://www.cancerbackup.org.uk/Treatmen ... n/GemCarbo ...and you can find many recent posts at onctalk.com (a superb resource) by entering "gemzar" or "carboplatin" or "gemzar/carboplatin" in the search box that appears on every page. Some of our mainland members may know about the clinical trial, or at least have suggestions on how you can find out. I'll be watching for their responses too -- that's something I should know. Best wishes and Aloha, Ned

Hi -- By now you've probably figured it out, but in case it helps, here's a step-by-step: 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. From now on, your profile will attach to every message you send. If you also want to attach it to messages you've already sent, go back to EACH of them, click the Edit button (which appears with all of YOUR messages), scroll down and check Attach signature, then Submit. Aloha, Ned

There are some brilliant answers here. Candidate for a sticky? Aloha, Ned

Maybe we can find a "new happy" -- I'm sure it's out there somewhere! Aloha, Ned

DEAL! Aloha, Ned

Hi, everyone! I don't usually post in the Inspirational forum, and I'm not really a die-hard football fan, but I must tell you that this year's University of Hawaii team AND those associated with it are nothing short of incredible, in the finest sense of the word. Talk about overcoming adversity...well, as an example, please read this: http://www.nytimes.com/2007/12/31/sport ... ref=sports That's only one of the many stories coming out about this amazing group. I hope you can watch at least part of the Sugar Bowl tomorrow -- win or lose against Georgia, it should be a heck of a game. Aloha, Ned

Please don't count her out yet! It's very possible that she WILL get better, and perhaps already has -- her next scan should give an indication of that. In any event, the so-called "prognosis" you were given is not tailor-made for your mom, but simply a historical average (or median) for a large number of patients with a similar diagnosis. Some do much worse (doesn't sound like your mom is one of those) and some do much better (her positive attitude can help her be one of these). Some docs don't take the time to explain what's meant by these numbers, and even if they do, some patients hear only the numbers and think they apply directly to them. I've learned a whole lot about my own cancer in the last 16 months, but one thing I have never bothered to learn is the prognosis associated with my diagnosis (NSCLC IIIB, malignant pleural effusion). If I asked my oncologist next week he'd probably look at me funny, since I'm most likely well past that point already and I'm in better condition now than I was when he first saw me. I think it's absolutely wonderful that your mom has stopped drinking, and I hope it lasts forever. I try not to think of alcoholism (or nicotine addiction, for that matter) as a "weakness," but rather as a chemical imbalance or genetic anomaly. It occurs to me -- although I've never heard or read this anywhere -- that the chemical changes brought about by the cancer itself as well as the chemo and radiation treatments, in addition to the psychological shock, may have actually helped your mom to stop drinking. As strange as it sounds, sometimes a cancer diagnosis can have very beneficial effects on a person's values and perspective. My best wishes and Aloha to you both, Ned

Hi, welcome to the group! I agree that your situation is quite unusual, but it's not unheard of to have a malignancy for which the root cause (primary tumor) is never found. I'm glad you're planning to post the question for Dr. West -- he's an amazing resource and can give you a better perspective on this. I'm also a IIIB who started my cancer journey 16 months ago with a massive pleural effusion, but I do have a primary tumor (adenocarcinoma) in the right middle lobe. Although IIIB is generally considered to be incurable, please don't get hung up on the word. Most of us have other incurable diseases which we manage as chronic conditions as a part of normal daily life, and cancer is starting to be thought of in that way. I think what we're really asking is, am I going to die from this? Probably the answer at this point in time would be "not necessarily," and our odds are gradually improving. I'm in better condition now than I was at diagnosis, and at age 72 my expectation is to die "with" cancer but not "from" it. That's my totally unvarnished response to your very valid concern. My best wishes and Aloha, Ned

Your loss is huge, and there are many, many here who do truly understand. No one in our family has really recovered from the loss of our golden 10 months ago, and I doubt if we ever will. But our love for the species is boundless and we have plenty to lavish on the next dog who enriches our lives. With our family's Aloha, Ned

Hi, Starr: I absolutely agree, and I would never stick with a doctor who didn't accept me as a major partner in my own medical care. The best of them probably enjoy the exchange with challenging (better word than difficult?) patients and try to anticipate what questions and articles will be brought to the next appointment. I think it also helps to be a little bit detached and try to team up with the doctor to address the problem, rather than expecting the doctor to contend not only with the medical issue but with my personality quirks at the same time. By the way, your use of "iconoclastic" compelled me to look up the word. Previously I'd relied on the context for meaning whenever it came up, but this time the "icon" part intrigued me. So if we're image breakers, what image are we breaking -- the image of passive patients who say "yes, doctor, whatever you say, doctor"? Best wishes and Aloha, Ned