recce101

Sandra, I can assure you that "bottoms up" is not an exclusively Canadian saying. And instead of doing a separate anniversary post, I'd like to just jump in and announce that this is my anniversary too! It was exactly TWO YEARS ago today that the thoracic surgeon came into my hospital room, sat down, and said, "You do have lung cancer, adenocarcinoma, and it doesn't look very good." While I can see one or two new clouds way out on the horizon, things still look a lot brighter than they did that first day of September back in 2006. Hey, Sandra, here's an idea to really expand your September 13 party without adding to your bar bill. Get one of your tech-savvy friends to project your computer display onto a big screen, log into LCSC Chat (which is always "open"), and receive greetings and good wishes from across the globe! Aloha, Ned

Compromised appetite is just part of the eating problem. Here's something I wrote to another member a year ago on the same subject: http://lungevity.org/l_community/viewto ... 878#316878 You're right, you gotta pack those calories in one way or t'other. Aloha, Ned

I developed a similar symptom about midway through my 6-cycle Taxol/Carboplatin program. I never fell, but did feel light-headed and a bit wobbly anytime I stood up from a sitting or prone position. This would last maybe a minute, then I'd be okay. I first suspected a blood pressure or circulation problem causing the brain to be temporarily deprived of sufficient oxygen-rich blood when I first stood, but my onc didn't detect any deficiencies in blood pressure or circulation and felt it was probably a cumulative side effect of the chemo. Though your father started the Taxol just a month ago, he did have other chemos before that, and it all adds up. After I finished the Taxol/Carboplatin program, this problem went away and didn't recur during my 8 months of Avastin alone and hasn't happened during my 11 months on Tarceva. About your second question, I'm not aware that age has any effect on the rate that cancer might spread, but I can say that with most cancer patients there will come a time when chemo does more harm than good. Exactly when that point is reached depends on age, general health, the aggressiveness of the cancer, and other factors -- some of them very personal and subjective. If you suspect that point is getting close, the best approach might be to tell your dad the decision to continue or stop treatment is his to make, and you will support his decision completely. There's no right or wrong here -- some people are determined to fight all the way no matter what, while others decide to stop treatment while they're still feeling well enough to take a long-awaited trip or tie up some loose ends. My Aloha, Ned

That's the first thing I noticed. I went back through the photos looking for a date stamp, thinking they may be from a couple of years ago, but no, Tom just looks GOOD! Thanks and Aloha, Ned

Welcome to the group. I can fully understand your mom's problems with eating, since I went through some of that myself. At one point liquids were about all I could tolerate, and I was drinking three 350-calorie cans/bottles of Boost, Ensure, or Wal-Mart's clone along with anything else I could get down to maintain weight. For variety, you can dissolve packets of Carnation Instant Breakfast mix in 2% milk, whole milk, or soy milk. There are several flavors, all of which I found very tasty. I also consumed plenty of ice cream (no chunks that might irritate the throat) and lots of milkshakes. The main thing right now is to pack those calories in and not worry about eating the whole range of foods that are thought of as a "balanced diet." After chemo and radiation, the eating situation should start to improve. Best wishes and Aloha, Ned

Gee, Gabby, I'm not only sorry your dad had a bad experience with the draining but also puzzled. Maybe he had something entirely different from the procedure I had, which is called a "thoracentesis" or "pleural tap." Really, the only thing I felt was when the local anesthetic was injected, and that was similar to getting a shot of lidocaine at the dentist's office. Mine was done in the imaging department of the hospital, and they had an ultrasound monitor to help the radiologist guide the needle and give me something to watch. If you feel up to it, here's a thoracentesis video I found on YouTube: Best wishes and Aloha, Ned

Congratulations on the year! Aloha, Ned

Hi, Gabby. Yes, fluid buildup is quite common, and that's what led to my diagnosis. You may have noticed that Sandra referred to it as fluid ON the lung rather than IN the lung, and that was not a typo. The fluid is not in the lung, but in the space between the lung and the chest wall, and the buildup of fluid there presses against the lung, compressing and sometimes collapsing it, greatly reducing lung function. Draining the fluid is usually quite simple and painless (local anesthetic). I sat on the exam table and watched the ultrasound monitor as the radiologist guided in the needle and drained a liter of fluid, and my breathing improved immediately. During my exploratory surgery 2 weeks later, more fluid was drained, but it has not recurred and the residual pockets of trapped fluid gradually diminished during chemo. Aloha, Ned

When I was on Taxol/Carbo/Avastin I had a couple of minor nose bleeds, and blowing out little clots of dried blood was fairly common. I had a perpetual runny nose and a lot of throat drainage (did not have a cold) but at the same time the nasal passages felt fragile and dry. It was something like "dry eye" syndrome, where the tears are deficient in their lubricating ingredient, the eyes sense the need for more lubricant, more tears are sent, and a cycle sets in which needs to be relieved with lubricating eye drops or other measures. For the nose, I found the dryness was somewhat relieved by use of a saline nasal spray 3 or 4 times a day. Also, smearing a bit of plain Vaseline in the nostrils before bedtime was comforting. I initially thought this was from the Avastin, since nosebleed is a frequently mentioned side effect, but it went away after I stopped the Taxol/Carbo even though I was on Avastin alone for another 8 months. With Tarceva I still put some Vaseline in my nostrils at night, part of my "full-body lube" with Cetaphil or an equivalent lotion. Aloha, Ned

Rochelle makes an excellent point! Moving your dad to the skilled nursing/rehab unit was a very good move. I've heard of cases where the patient was sent home in that sort of condition. Aloha, Ned

Great news, Gabby! Aloha, Ned

Wow, that's terrific! You guys have really been on a rollercoaster the past 13 months. How is Jim feeling -- did the eye problem resolve? Aloha, Ned

Hi again. I responded to your other post, and frankly I didn't even notice it was in the "wrong" (SCLC) forum. Many of us use the "View posts since last visit" feature and will see every new post regardless of where it is. We have a good number of Stage IV survivors in the group and you should be hearing from some of them soon. Aloha, Ned

Welcome to the group. I was diagnosed with NSCLC Stage IIIb 24 months ago, and had Taxol/Carboplatin (plus Avastin) as my first line treatment. I had good results with it, and while the side effects were not a lot of fun, I tolerated the treatment pretty well. I'm considered "stable" -- a welcome word around here -- and feeling much better than this time 2 years ago. You can read the details of my treatment and experience using the link below. Please come back often and ask as many questions as you like. We welcome every opportunity to help. Best wishes and Aloha, Ned

Thought I'd posted here before, but maybe not. I'm coming up on my 2-year anniversary in a few days, feeling good with minimal Tarceva side effects, looking forward to starting my third year as a NSCLC IIIb survivor. Aloha to all, Ned

HST, which stands for Hawaii Standard Time, not Harry S. Truman. Ned

Patti, now you're a CONFIRMED member of the Empty Head Club -- congratulations!! Ned

From what I've seen, it's certainly possible. Some lung cancers are very slow growing. And unless there is a lung tumor or met in a location where it presses against a nerve, blood vessel, or some other critical organ, the lack of symptoms is not surprising. My first and only symptoms were a nagging cough and reduced stamina, and that didn't happen until the tumor in my right lung had caused a buildup of fluid (pleural effusion) between the lung and chest wall large enough to collapse most of the lung and essentially glue it to the wall in places. Reading the report of my exploratory surgery was quite a revelation, since I had no idea anything like that was going on. I can't help you with the sweating question. Actually, I've had the reverse effect, which I think is more from the chemo than from the cancer. But cancer in itself causes various chemical changes that can have effects on metabolism and other body functions, and it's sometimes difficult or impossible to know what's causing what. Since your dad doesn't want treatment, it's great that he's still feeling relatively well. Of course it's this same lack of symptoms that causes many people to have such a late diagnosis and rapid decline. Best wishes and Aloha, Ned

And 2:00 pm Hawaiian (we stay on standard time year round). There's a chance I might actually make it today! Aloha, Ned

Well, Gabby, looking on the bright side, at least there's no infection. I'm sure they'll be monitoring your dad's potassium and sodium levels and anything else that was out of whack before, since these various ailments and medications can combine in some strange ways. You guys getting any rest yet? Aloha, Ned

Welcome to the group! I'm approaching the 2-year mark (less than a week to go), but I'm in the NSCLC IIIb category. We do have some longtime SCLC-ED survivors in the group, and some of them should be chiming in shortly. Does your husband have a follow-up CT scan coming up soon? SCLC patients often respond very well to chemo, so let's hope and expect that your husband will be one of them. Aloha, Ned

Sounds like muscle cramps, which can result from a variety of causes. She's probably been checked for a lot of possibilities, but maybe something in this article wil ring a bell: http://www.medicinenet.com/muscle_cramps/page2.htm Aloha, Ned

There's one thing about cancer that could be thought of as a plus -- it usually gives us a chance to plan our exit. In that regard, it beats a sudden stroke or getting hit by the proverbial bus. And for those of us who become longtime survivors and eventually die of something else, we've had a wakeup call and a unique opportunity not given to most. Aren't we lucky?!! Aloha, Ned

Wow, Gabby, where would we be without proactive daughters?!! I hope you can ALL get plenty of rest very soon. Dobrý den mixed with a whole bunch of Aloha, Ned

I second Sandra's suggestion. If you haven't already, please 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 have "dual citizenship" so to speak, and have the same usernames there as here. I didn't see your mom's cell type/subtype in your description -- your should add that if you know it, when you post your question to cancergrace.org. As you've undoubtedly discovered, many clinical trials are for people with no previous treatment, and the available trials become rather limited later in the process. I hope you find a promising trial soon. I'm not familiar with ABT-263, but Dr. West probably is. Best wishes and Aloha, Ned