recce101

Rosie wishes everyone a Happy New Year and invites you to watch her latest YouTube video! Ned

Don't you just love those 3 letters — especially the all-caps version! Aloha, Ned

Hi, Pamela. I can't add much to what's already been said. The PET scan should give a good indication of your mom's situation and hopefully confirm that whatever cancer is still active (if any) is still confined to her chest. The first priority, of course, is for her to recover from the abdominal surgery. Do you have siblings in Florida or elsewhere who can share some of the burden? Best wishes and Aloha, Ned

You guys have a great day, Denise — you certainly deserve it! Aloha, Ned

Hi, Michelle, welcome to LCSC. I'm sorry to hear about your father's diagnosis, and hope we can help you and perhaps him with any issues you may have. First, as you will probably hear from others, we don't place much if any stock in prognosis statistics. While the average/mean survival time may be a certain number of months for a certain stage of lung cancer, these numbers have essentially no relevance for any individual patient — there are simply too many variables, such as general health, how early or late the diagnosis was arrived at, how aggressive a particular cancer is, and more. What chemo combination was tried with your father? After that was discontinued, were any other options offered? How is he feeling now? Please read through some of the personal stories here, either in the My Story forum or in the profile section of most of the messages in any forum. Perhaps you'll see a parallel in some that will give you and your dad a better perspective and some hope. Much Aloha, Ned

That's good — I would have wanted to know too. Knowledge is strength. Aloha, Ned

You're right, Shelley, it's a wonderful present! And the best to you all in the New Year. Ned

Scott, go to cancergrace.org (GRACE - Global Resource for Advancing Cancer Education), go to the Forums section, and post a question. Provide your information similar to how you did here, and within 24 hours you should have a response from Dr. West (a medical oncologist) or Dr. Goldberg (a radiation oncologist). They don't have a thoracic surgeon on the GRACE faculty at present, but I'm sure they've seen patients post-surgery who have had ribs removed. Someone here who's had that experience may jump in too. Aloha, Ned

About 67 right now, but it's just an hour after sunrise and we're at an elevation of about 1000 ft. Will be around 80 most of the day. Nothing chattering too bad here. Ned

Can you see Cancun from your house? Ned

Hi, Jenn. It really burns me up too when doctors are careless with their choice of words. With just a little extra effort they could explain things in a way that would save families a great amount of anguish. It's great to hear that Steve's back pain is not bothering him so much now (the radiation must have helped), and that in spite of some problems with chemo he's managed to bounce back reasonably well. I hope the next scans show good shrinkage of the lung tumor. Do you know what chemo drugs were used for the 4 cycles? Did the oncologist mention any options for additional treatment after the scans are done? I've been on one treatment or another for the past 28 months and I'm feeling pretty good now, certainly better than I did at diagnosis or during those initial months on the "hard" chemo. When my current treatment stops working, which it probably will eventually, I'll switch to something else. Truthfully, I don't consider my cancer a death sentence, but as one more chronic condition that I'll need to deal with for the rest of my life, just as I've been dealing with a couple of other incurable maladies for many years. So I think of my cancer treatment as prolonging my life, but without the "only." A lot of docs may not see the difference a word makes, but I think most of us on this side of the stethoscope do! Aloha, Ned

Hi, Scott, welcome to the group! I started with two tumors in my middle right lobe, but I also had a large pleural effusion that pushed the lung to the side and allowed one tumor to invade the chest wall. I was therefore not eligible for a lobectomy, but the area was cleaned up surgically as much as feasible. Now, after nearly 28 months of treatment, I still have a small amount of active tumor in the right chest, but it hasn't settled anywhere else and I'm doing much better than I ever thought possible when I was wheeled into surgery the summer of 2006. If your surgeon is able to remove all visible traces of the cancer via lobectomy, then subsequent chemo (and perhaps radiation too) should give you a realistic chance of a cure — 5 consecutive years with no evidence of disease, often referred to as NED. I was intrigued by "magic" as a kid and had all sorts of paraphernalia which I used to entertain the neighborhood and indulgent groups in our town. But I was too klutzy to do much with sleight of hand and decided to fly airplanes for a living instead. Best wishes and Aloha, Ned

And the corollary is: Don't ever get into a p***ing contest with a skunk. Ned

The message board was a separate site (Lung Cancer Support Community) until 6 or 7 months ago, so when you first came across Lungevity, perhaps it didn't have the board. Even at a distance of 800 miles, you can still be a lot of help to your parents and sister. How is your dad doing right now? Is he currently on treatment? Another terrific website, for more technical medical questions, is cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). The site has a wealth of information, 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 online. A lot of us are "dual citizens" and have the same usernames there as here. Best wishes and Aloha, Ned

Yep, that first anniversary is a biggie, and you'll like the second even more! Have a great party and holiday. Aloha, Ned

Hi, Peg. I'm sorry you had need to join us, but welcome. May I suggest that you visit cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). There's a wealth of information on the site, 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 are "dual citizens" and have the same usernames there as here. The GRACE Q&A forum on SCLC is: http://cancergrace.org/forums/index.php?board=44.0 After you've read a few of the posts, I believe you'll be impressed and perhaps even amazed at the quality of the resource Dr. West is providing. Of course he can't give actual medical advice to someone who's not his patient, but his responses lay out the various considerations and options of an issue in a way that is thorough, balanced, and very helpful. If you choose to post a question for him, you might give a bit more detail on your husband's situation and what treatment he received previously. Best wishes and Aloha, Ned

Ditto on most of the above. Long, curly, out-of-control eyelashes are just one feature. There are also those thinning, will-it-ever-grow-again spots, certainly not helped by occasional scalp sores. Sandra, I think it's time for your next organizational project, the Tarceva Weird Hair Club. Ned

Ree, I don't often read posts in the Grieving forum, but I saw yours and knew it would be special. My fondest Aloha, Ned

Hi, annepeyton, welcome to the group. I doubt if you can get any better advice than what Sandra and Judy have already given — they're two of the best. I especially like the suggestion to try some reverse psychology. Since your MIL was a ball of fire before this ordeal, I seriously doubt that she's just goofing off looking for attention and sympathy. If she gets the idea that any of you think that she is, that could be counterproductive. Did she lose her hair during the chemo? That can hit some people rather hard. As a guy I didn't mind becoming bald, but I did miss my eyebrows! Good luck, and let us know how it goes. Aloha, Ned

I'm surprised too. Maybe your onc thought he heard a question and responded accordingly. But basically I agree with Sandra. Wishing you the best. Ned

Hi, "other" Sandra, welcome to the group! Your very good news is just in time for the holidays. Best wishes and Aloha, Ned

Hi, Richard, thanks so much for your post. It's great to start the day on such a positive note. Are you still on Tarceva? Since you asked about where to post, let me suggest this: First, write a more detailed account of your cancer history and post it in the My Story forum. That forum is not designed for responses and discussion, but as a repository of personal stories covering initial symptoms, tests and diagnosis, treatments, side effects, results of subsequent scans, etc. You can edit it in the future whenever you have something to add. Next, go to the Profile link above, scroll down to the Signature block, enter a link to your My Story post and any other information you want to include (it will appear below the short horizontal line in all your messages), ensure Always attach my signature is marked Yes, and click Submit at the bottom. Then, read the new messages as they appear (the View posts since last visit feature is quite handy) and respond as you see fit. Your experience will be very encouraging to many new members. If you have a question of your own, post it as a new topic in whatever forum seems most appropriate. Best wishes and Aloha, Ned

Hi, Ellen, I see you've been busy! The only worrisome symptom I've had the past 2 years was the stiff shoulder, which I attribute to many months of Avastin (slow healing of everyday wear and tear). It resolved after I changed to Tarceva. Actually, I've been a picture of health ever since I got cancer, like it's running the show and won't allow competition! You definitely have my sympathies on the stomach problem, as my wife also had intestinal adhesions about 20 years ago as a complication of a hysterectomy. It required a second surgery a week after the first to get everything unstuck and straightened out, but it was successful and she's had no further problems. Occasionally (a few times a year) I have what appears to be a MASSIVE floater in my right eye which blocks out half of the field of view on that side for a couple of minutes. But that's been going on for many years, even before I had cataract surgery, and my ophthalmologist doesn't see anything amiss. I'm thinking it may have something to do with the optic nerve or the brain, which may or may not be comforting. Aloha, Ned

That's interesting, Barb. Maybe Bill has his own personal barometer of how well a treatment is working, even if "the bulge" is of no concern in and of itself. My own personal barometer is the amount of extra calories I need to consume in order to maintain a steady weight (the fewer extra calories needed, the better). In each case so far it's correlated with the results of my next scan. But then, I'm one who always tends to overanalyze stuff. Keeps my mind occupied, I guess. Aloha, Ned

Hi, Tom, it's good hearing from you! I've always enjoyed reading your posts, and I especially remember getting a lot of encouragement from them when I joined the group in September 2006. By then you'd already received your NED award, and I was still learning the terminology and wondering what the future held for me. Well, 27 months have gone by and here we are. All of my blood counts have stayed in range, assisted on the WBC side from automatic Neulasta injections while I was on Taxol/Carbo, but lack of stamina has been the most pervasive side effect of my treatments. Like someone said recently, I feel fine until I actually try to do something! I don't think I've ever had clinical depression, but I know for a fact that my mental attitude has been lifted by writing to others in the group and trying to help them with the shock of diagnosis or some particular side effect. Every minute I spend trying to help someone else is one less minute for me to dwell on my own condition. Now don't get me wrong — I would never want to imply that you're not doing this already in some form, maybe volunteering at a homeless shelter in Jacksonville or doing something else to help those less fortunate. Maybe a small adjustment is all that's needed. When it comes to charitable and service organizations, I know that for myself at least, it makes a big difference what role I have in the organization. Dealing with administrative matters as a board member, while necessary, is a lot less satisfying than working directly with those receiving the help. Congratulations on the 3 years! Aloha, Ned