recce101

You didn't mention whether he has a pleural effusion (fluid outside the lung, in the space between the lung and the chest wall, aka the pleural space). If so, and if the fluid is determined to be malignant (by finding cancer cells in the fluid or identifying other characteristics that point to the cancer as the source of the fluid), then the cancer is staged IIIB, which is considered inoperable. It's assumed that there are cancer cells in the bloodstream and that even if the lung tumor could be safely removed, the horse is out of the barn so to speak and the condition must be treated systemically (chemo). That's my situation (see below). If he doesn't/didn't have a pleural effusion, that simplifies things somewhat and you can disregard this entire first paragraph! You should ask specifically WHY his condition is considered inoperable. Here's an article on the current TNM (primary Tumor, regional lymph Node involvement, Metastatic involvement) staging system for NSCLC which you might find helpful: http://www.emedicine.com/radio/topic807 ... nm_staging Looking forward to your updates. Aloha, Ned

Hi, welcome to the group! I agree that Nov. 14 is a long time to wait before taking the next step. Whether that much delay would have a significant impact on your mom's medical treatment is hard to say, but for sure it would raise the stress level throughout your family, and that's never a good thing. I know that a delay of that length would drive me absolutely up the wall, and I'm usually a pretty calm guy. When the rest of the crew wakes up in the morning, someone may have a suggestion for a comprehensive cancer center in your area (the Cleveland Clinic may be one of those -- I just don't know) where cases like your mom's are handled quickly, all necessary tests are done on site, and the docs are all on the same page. If surgery is indicated, that could be done there too, by docs who do that type of surgery every day. Follow-up treatments like chemo could then be done closer to your home. Now, how to speed things up, whether it's at the Cleveland Clinic or somewhere else. If you got the referral to the Cleveland pulmonologist from one of your local physicians, then his office would normally make the initial appointment with the specialist. At least that's how it's been with all my specialist referrals, for lung cancer and other problems, and the same with my parents and inlaws. On occasion I was asked to call the specialist's office for the specific time, but the rails were already greased and I was worked in very promptly. On the other hand, if you're trying to get established with the Cleveland Clinic "on your own" and the standard appointments channel seems unresponsive, which is frequently the case, you could ask a local physician who is a caring, proactive type to help you out -- maybe your family physician, or one you've come to know at your local hospital. Or perhaps a social worker at your local hospital (their title doesn't come close to describing what they do). Medical professionals who have been in the field for a while have contacts all over the place, and it's mainly a matter of finding one who is willing to make a couple of phone calls for you, bypassing the appointments bureaucracy. Let us know how it goes. Aloha, Ned

So true, Rich. We see some of the worst in life every day through the media. This community allows us to see some of the best. Aloha, Ned

I get that occasionally, especially when exercising. The most recent time was about 10 days ago, just before I started Tarceva. I figured it was a little twitch that would go away like the others, but after a couple of days it became slightly sore continuously even if I wasn't moving. So I looked at my back in the mirror and was surprised to see a big ugly patch of bright red bumps just below my thoracotomy incision. First thought was insect bites, but I couldn't find any illustrations online that matched. Then I got a couple around toward the front, showed my wife, and she said "shingles!" I said "naw, can't be, everybody I've known who's had shingles said it was really painful!" When more appeared on the back I got our family doc's office to work me into the schedule. He said "shingles!" Gave me a prescription for Valtrex. He thinks one reason it doesn't hurt that much is that I'm already on Neurontin for the neuropathy. I wonder if Katie would allow us to have a "My Scar" photo contest?? Aloha, Ned

Good show, now go have a blast!! Aloha, Ned

SUPER -- that's the kind of news we love to hear!! Aloha, Ned

Way to go, Mary! I'm not much of a dancer, but if you look out toward the southwest you'll see a guy jumping up and down who looks like this !! Aloha, Ned

Hi, Mary: Maybe when the doc said "no more meds" he meant "for now." You've been through the wringer, so to speak, and your body needs a rest, but it sounds like you got really good results. Whatever this new thing is can perhaps be put on the back burner for a while so you can rebuild some strength. That's at least as important as another new med right now, don't you think? Aloha (that's pronounced ah-LOOOWWW-ha in Hawaiian and in lon-GUY-land-ese)... Ned

Hi, Ken, welcome to the group! Waiting for your update... Aloha, Ned

Sounds great to me, Max! Like many others in the group, I'd never heard of Valley Fever. I found a good mayoclinic.com article on the disease here: http://www.mayoclinic.com/health/valley-fever/DS00695 If Valley Fever is confirmed by the smear or blood test, would a needle biopsy still be done? Maybe you could join the Nodule Watchers Club instead... Anyway, very encouraging news! Aloha, Ned

Probably so! I haven't had radiation, but did have a Neulasta injection the day after each of my 6 Taxol/Carbo/Avastin infusions. Fatigue would start that same evening, then the next 2 or 3 days muscle/joint/bone aches would be added to the mix. At the same time, the steroid given with the IV premeds the previous day would be wearing off, so there was a combination effect. But I think most of it was due to the Neulasta. Aloha, Ned

Hi, Pipfitz, thanks for unlurking! I'm also a bit uneasy with the term, but for a different reason. It implies that we're fighting a foreign invader in the same way that we would attack a virus or bacterial infection. Many people find it helpful to think of cancer as an invader, but I don't. Cancer cells are my own cells that have been damaged in some way, possibly but not necessarily by a foreign substance, but which for some reason did not die along with the 50 billion other damaged or "used up" cells in my body that undergo programmed cell death (apoptosis) every day. While we may need some emergency assistance in the form of chemo or radiation to get control of the situation, the long-term solution is to strengthen the body's processes to the point where they can once again dispose of potentially cancerous cells as they're designed to do. A mind game? Maybe, but whatever mental energy I devote to the cancer issue I'd prefer to place on the positive, process-strengthening side, so I can put that part of my life back on autopilot. Aloha, Ned

Hi, Sally, welcome! I had the same digestive system and neuropathy side effects from the taxol as you, but not as severe. Though I finished the taxol/carbo part of my treatment in late January, my GI tract is still not back to normal, probably because the avastin which I was still on through September significantly delays healing. My sense of taste has returned for the most part, but like you, my stomach won't handle nearly the quantity it used to. I still get some reflux, usually with acid, if I eat the wrong thing (whatever that is on a particular day) or eat too much of anything. But it's slowly improving and not nearly as bothersome as it was some months ago. The neuropathy didn't start until my 6th (last) taxol cycle, and I'd been watching for it because of what I'd read and because my oncologist had been asking me about numbness and tingling at every previous checkup. It came on very fast and within 2 or 3 days I needed a walker to get around, but I tracked my onc down at his other clinic and he called in a prescription for neurontin which helped immensely within a couple of days. Since then there's been very slow but constant improvement, and I still have some residual numbness but no tingling. So I was lucky on that one, which can be very debilitating as you well know. Now, about sugar feeding the cancer. I'd heard this story too, so on one of my first meetings with my oncologist I asked about it. He said that story continues to go around, maybe strengthened in some people's minds by what they know of PET scan basics, but there is no good evidence that the amount of sugar in one's diet has any bearing on cancer progression. As a devoted ice cream lover I happily latched onto that explanation and have never looked back! Aloha, Ned

Debi -- I've known very few who have approached, even for a moment, the rare combination of grace and grit that you and Tony lived every day of this difficult journey. Please allow yourself as much time and space as you need to make the adjustments thrust upon you. My love and Aloha, Ned

Terrific, Alisa -- that's great news! Aloha, Ned

Thanks, Peachy. Glad it was of some help. Aloha, Ned

True, not only to confirm the presence of cancer, but also to determine the cell type, which has a bearing on the most effective treatment if it is in fact cancer. Without jumping too far ahead, I'll just say that IF it's cancer, simply maintaining the same caloric intake as before probably won't suffice. Cancer causes various changes in the body which cause it to burn calories faster than normal. For years I'd been holding about 15 pounds above what our family doc said was my ideal weight. Then, a few months before my diagnosis, I started losing weight slowly. I felt fine and was delighted that FINALLY my dieting efforts were paying off and looked forward to seeing how happy my doc would be on my next periodic checkup. Well, if you've read my profile (previous message in this thread) you'll know that my next visit with him was not a periodic checkup. My wife started bringing home large quantities of Ensure and its Wal-Mart clone, and at one point in my treatment I needed 3 cans of Ensure Plus (350 calories per can) in addition to my usual meals to keep my weight from dropping way below what was desired. After the chemo started working I was able to cut back on the Ensure and still maintain weight. Now, 14 months after diagnosis, there's still a small amount of activity in the right lung, but I don't need Ensure to maintain weight. A big bowl of ice cream after dinner does the job! If at some point I start to gain weight and have to cut back on my beloved ice cream, then I guess I should take that as good news. I'll be watching for your next update. Aloha, Ned

Hi, Peachy: I still have a rather detailed account of my side effects from this combination in my profile (below). Was about ready to remove some detail to save space, but didn't get around to doing that, which makes it easier to answer questions like yours. The combo and then Avastin alone worked well for a year, and was still working to a degree but running out of steam, so I just this week switched to Tarceva. The skin problems I had/have seem to be more than is typical, but just about everyone gets the fatigue. Mine was not overwhelming, and I still did productive things every day, but naps were a must starting a couple of days after each infusion, especially during the later cycles. Best wishes and Aloha, Ned

Hi, panicmom, welcome to the group! I haven't been on the site since yesterday, so I'm a bit behind on my reading. First, I agree with everything that's been said above, and I see you took the advice and got a chest x-ray, for which you're awaiting the results. But just to round out the picture, I'll try to explain what my "persistent cough" felt like (that's the reason for my visit to the family doc which started this whole chain of events, as you can see in my profile below). My cough was not prompted by a drip-type tickle in the throat, which I've had plenty of throughout my life and still do. This one, which went on for a month with no change, occurred only when I breathed in deeply. It was a completely dry tickle, as if someone was in there with a feather a couple of inches below the adams apple. And the cough was also completely dry, with no throat clearing sensation and nothing to spit out. After a month of this, there was a sudden change in the sound of the exhaling air during the cough, like the feather guy now had a tiny high-pitched air whistle that he held in the stream of outrushing air. I could produce the same little whistle by breathing in deeply and then exhaling forcefully through the mouth. My friend Mr. Google convinced me that this sound was not something to be toyed with, so I picked up the phone and made an urgent same-day appointment. I don't fully understand the mechanics of what caused my particular tickle and whistle, but it was apparently related to the large amount of fluid (pleural effusion) which filled almost 3/4 of my right chest and significantly compressed the lung on that side. I'm surprised that my shortness of breath was so mild. When the fluid that could be reached was drained (thoracentesis) a few days later, the feather/whistle guy departed and has not returned. Looking forward to hearing about your x-ray results. I seriously doubt if "cancer" will be part of any diagnosis you receive. Aloha, Ned

Wonderful ideas! I almost feel back in control again. Aloha, Ned

Hi, kjude: I don't have any personal experience with Alimta YET, but it's a possibility for me in the future. Here's some good info on onctalk.com: http://onctalk.com/?p=274 Or, you can type alimta in a search box on onctalk.com and get many screenfuls of links to articles there. As others have said, the benefits and side effects run the gamut -- from wonderful results with practically no side effects to very little benefit and severe side effects, primarily fatigue. Let's hope you're in the first group! Aloha, Ned

Welcome to the group! Well, guys get that too. It's been almost 14 months since my right-side thoracotomy, and I still have a strange combination of soreness and numbness starting about an inch below the right nipple and extending down to just below the front of the rib cage. Oddly, the incision area itself feels about normal. During my post-surgery checkup the surgeon said the discomfort in the front was "referred" pain from where the nerves were cut on the side (essentially what Heather wrote) and that it may get better with time but might never go away completely. Since I don't have any kids jumping on me these days, about the only time I notice it is when I'm washing that side in the shower. One more feature of our "new normal." Aloha, Ned

Hi, Dave, 43 years for me. Actually, I think there's a good chance something besides smoking caused my LC, which is the same type as yours and also on the right side. You're starting on the same chemo combination that I had. Mine was once every 3 weeks, and I'm still on the same schedule, except since February it's been Avastin only. If you'll put your diagnosis/treatment/test results info in a profile at the bottom of your messages, you can save yourself a lot of repetitive typing. Click "My Profile" at the top, scroll down to "Signature," enter/update your information, scroll further down to ensure "Always attach my signature" is marked "Yes," then click "Submit" at the very bottom. Aloha, Ned

Leslie and Adrian: I've been following all of your posts and profile updates daily. If I could share some of whatever strength I still have with your dad, I would surely do it. There's plenty out there for both of us, for all of us -- we just have to find a way. My fond Aloha, Ned

Hi, it's me again. You need to close your font size tag by putting [/size] at the very end of your profile. Then the desired size will actually take effect and the 2 tags will disappear. Good start! Aloha, Ned