recce101

Heck, I grew up on 78s! I believe they came after the wax cylinders. Aloha, Ned

Julia, I'm so sorry. Aaron was extremely fortunate to have your love and companionship through the most difficult part of his short life. And the rest of us are lifted just by knowing that there are courageous and selfless people like you in the world. My fondest Aloha, Ned

Hi, Erin, welcome to the group! I'm just over a year ahead of your dad on this trip and started with the same chemo regimen. After 6 cycles of Taxol/Carbo/Avastin I was definitely ready for Avastin alone, and I was starting to feel that way during the 5th cycle, so I certainly understand what you're saying about the buildup of side effects. Many oncologists feel that the benefits of Taxol/Carbo (with or without Avastin) have about played themselves out after 4 cycles, and after that the side effects start to overpower any remaining benefit to be gained. Here's a good OncTalk exchange answering my questions on that issue something over a year ago: http://onctalk.com/2007/01/17/duration- ... ng-cancer/ I found Avastin alone to be very easy to tolerate, and the side effects I had experienced with Taxol/Carbo/Avastin gradually disappeared while I was on the maintenance therapy. My first scan after starting the Avastin alone treatment showed a further reduction in the tumor, and when it lost effectiveness it did so very gradually with plenty of time to decide the next step. When I switched to Tarceva in October 2007 my tumor was still smaller than it was at diagnosis in September 2006. I'm now stable on Tarceva. Looking for good scan results for your dad next week! Aloha, Ned

I'm not a constant fan of Nancy Grace, but as far as content goes, she nailed it on this one. For anyone who's interested, here's the link to make a comment, and mine is below: http://www.cnn.com/feedback/forms/form5.html?81 Aloha, Ned

Hi, Snappy, the night shift is now on duty. We use "met" (singular) or "mets" (plural) as shorthand for metastasis or metastases, which means spreading of a cancer from its original site to somewhere else in the body. If we have lung cancer that shows up in a bone, then we have a bone met. And yes, that can cause pain as well as weakening of the bone and eventual breakage. The good news is, most bone mets can be successfully treated with radiation and/or bone-strengthening drugs. I can't help you with the headache question -- there are just too many things that can cause them. Mention it to the doc and see what he thinks. There may be some additional symptoms that will lead the doc to a possible cause. I would not expect anyone on chemo and radiation be especially chipper. Aloha, Ned

Wow, that was great -- exactly the approach we've been looking for! We should all email our thanks to Nancy. Aloha, Ned

Wow, John, I guess we can never take anything for granted! Aloha, Ned

I think I'm a little confused too about the current status. As I understand it, Joe is going in this morning (Wednesday) to have "warm feeling" and other symptoms checked. What's not clear to me is when the chemo (probably with Taxotere substituting for Taxol) is to be redone. I assume the infusion was stopped when the Taxol reaction occurred, and that usually goes in before the Carboplatin, so that means he has received no chemo so far (the premeds don't count). The combined chemo/radiation program he's on is based on getting both, since one complements/enhances the other. Another person I know of who had a Taxol reaction went back in the next day for a successful re-try, this time with Abraxane, which like Taxotere can be substituted for Taxol. So if Joe is getting the chemo redone today, or maybe another day this week, that's great. But anything more than that would be troubling to me. Aloha, Ned

Good for you, Kg -- gotta recharge those batteries! Aloha, Ned

That's great, Neil! I saw your comment in OncTalk before I came over here. Aloha, Ned

CONGRATULATIONS!! Watching for those photos. Aloha, Ned

Bummers! In addition to Patti B, there's someone else I recall who had a reaction to Taxol, then switched to Taxotere and had no further problems. I'll see if I can find that post, or maybe she will check in. Aloha, Ned

Hi, Molly, I'm glad you visited. Please stay with us and ask any questions you like. Aloha, Ned

Hi! I see nobody has answered yet, and though I haven't had radiation and am not the best person to advise you on that part, I'll give you my best guess -- recognizing, as you say, that people are different. I doubt if fatigue will be an issue the first day, either from the radiation or the chemo or the combination. It may be a limiting factor within a few days, and how severe it is varies a lot from one person to the next. It usually builds up gradually, so there's a little time to plan. The chemo nurse's special attention to the first day is because of the possibility (not really common, but it can happen) of an allergic reaction while the chemo is being administered. If that's going to occur, it's usually on the first infusion, and Taxol is frequently the culprit. Don't confuse this with the side effects they've been telling you about. The allergic reaction comes on rather suddenly, while the drug is going in, and causes problems with breathing, pulse, blood pressure, or other vital functions which require immediate attention. I believe there's a rule -- at least there was at my clinic -- that for the first infusion an oncologist has to be present within the facility, not just on call. If your husband doesn't have an allergic reaction, and I doubt that he will, he'll probably consider the entire session a piece of cake. One of the IV premeds will be Benadryl or something like it, and that tends to make people rather drowsy. Some like that feeling since it helps them sleep through the whole session, but I didn't because it interfered with the DVD movie I always wanted to watch. The premeds will also contain a steroid, and as soon as the Benadryl wears off the steroid will take over and he'll start to feel energetic and probably hungry as a horse. For me, that effect lasted through most of the next day as well, then the fatigue set in the third day and lasted through the fourth and sometimes fifth day. I could still function, but a nice afternoon nap was a must. With the modern premeds as well as prescriptions to take at home, nausea is not nearly the problem it used to be. I never had the slightest bit of nausea. On the other hand, getting tired, especially since your husband is getting radiation too, is pretty much of a sure bet. The only question is how bothersome it will be. It's NOT a trivial thing, anywhere! Just go with the flow, and you'll both be fine. Aloha, Ned

Hi, welcome to the group! You're right that the statistics are not good with stage IV lung cancer, but there will always be people on the winning side of the numbers and you'll be hearing from some of them soon. Please let us know what treatment options are being offered. If the pain your dad is experiencing is due to cancer mets (metastases) in the bones -- rather common -- that can often be alleviated very effectively by radiation. The basic problem, cancer in the lung(s) which has spread elsewhere in the body through the bloodstream, would be treated systemically with chemo. Scary, yes. Hopeless, no. Aloha, Ned

Welcome, Laura. The collective knowledge and experience on lung cancer here in the LCSC is truly remarkable -- there's nothing quite like it for first-hand accounts by patients and family members, coping tips, and "we get it" support. Another exceptionally useful site, which complements the LCSC, is 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 have the same usernames there as here. Aloha, Ned

Happy Birthday, youngster, and congratulations! Aloha, Ned

Good show, Fred! Aloha, Ned

Hi, Pat: I'm one of those who always goes into a rant about the gloom-and-doom docs who quote outdated statistics for large groups of patients as if they were tailor-made for the patient at hand. But in my time with this group I've never read an account like yours. Though I'm convinced that an upbeat attitude and positive expectations are genuinely beneficial on a physical level, some of this onc's statements lead me to believe there's something else going on -- and I haven't the foggiest idea what it might be. You could meet with the doc alone and ask for his unvarnished opinion, but I somehow think that wouldn't accomplish anything. What's puzzling to me is that he could have easily made positive, encouraging statements to your FIL that were at the same time medically reasonable. If your FIL has tumors in both lungs and is therefore Stage IV, then statements such as these would be reasonable and (to me) encouraging: "With tumors in both of your lungs, surgery is not an option, but we have plenty of ways to treat the cancer." "We don't use the word 'cure' until someone has been cancer free for 5 years, but we can often manage it as a chronic disease for a long time or even indefinitely." For what it's worth, here's my personal outlook as one with NSCLC adenocarcinoma stage IIIB, generally considered inoperable and incurable: While I would love to be cured, that's probably not in the cards for me, and at age 72, victory over cancer means keeping it beat back until I'm old enough to die of something else. To put it another way, my hope and expectation is to die WITH cancer, not FROM it. You have an excellent grasp of the situation, having been through a cancer journey with your SIL. You'll see from my profile below that I had Taxol/Carbo on a 3-week cycle. I kept a lot of my side effect details in the profile for times like this. Comparing my side effects to others on the same drugs, I'd say my skin toxicities were worse than most but fatigue and other problems were typical or towards the mild side. I was never nauseous, and I was able to do something productive every day (some days much more than others). I "felt" okay to drive, but did not for a considerable period (about 2 months) because of chemo-induced vision problems -- could not read street signs, for example. By the way, I grew up in West, about 15 miles north of Waco on Interstate 35. My parents moved from West to Waco and lived there until 1995, when my mom passed away and we were able to convince my dad to move to Hawaii to a senior complex near our home. He got his golf game back into shape and had a great time, eventually passing on just before his 87th birthday. Aloha, Ned

Hi, Judy: I was on Avastin for 12 months -- 6 infusions at 3-week intervals (4 months) in combination with Taxol/Carboplatin, and 12 infusions also at 3-week intervals (8 months) Avastin alone. The Avastin alone continued to shrink the tumor and reduce the loculated pleural effusion for a few months, then although the effusion continued to resolve, the tumor began to grow very slowly. At the end of month 12, when I switched to Tarceva, the tumor was still smaller than it was at the end of month 4, when the Taxol/Carbo was completed. During one of my appointments I asked my onc what's the longest he'd had a patient on Avastin before progression -- he said about 12 months. I asked Dr. West what's the longest progression-free time on Avastin that he knew of, and he said probably in the vicinity of 18 months. No symptoms other than the slow healing that I've mentioned before. I called my 8 months on Avastin alone "Easy Street." Aloha, Ned

Wow, Michael, that doesn't sound like much fun at all! Glad the Lorazepam (Ativan) is helping you rejoin the human race. I was prescribed Ativan when I started my Taxol/Carbo/Avastin program and told to take it for 3 or 4 days starting the first day after infusion "whether I needed it or not." Since I never had any tendency toward nausea I quit taking it after the 2nd cycle. I know some people have had considerable dependency and withdrawal issues with it, but according to the literature that shouldn't happen if it's used for less than a week at a time. Thanks for the update, and keep 'em coming! Aloha, Ned

Judy: No, I got the Neulasta injection only after the 6 Taxol/Carbo/Avastin sessions. When I transitioned to Avastin-only I asked about it, and the chemo nurse said no, don't come back in for Neulasta. I did have the Benadryl premed with the first couple of Avastin-only infusions, but my onc agreed to stop that since I never had any sort of allergic reaction. So with the Benadryl drowsies out of the picture, the Avastin was a non-event which didn't affect me at all, and the only thing that reminded me I'd had it was seeing the bandaid on my port when getting ready for a shower that night. The only long-term affect was slow healing, not only of skin scrapes but also muscle strains from exercise or normal daily activity. Now that I've been off the Avastin for a few months, what I thought had become a chronic shoulder problem has resolved and I'm slowly building up my atrophied upper body muscles. Aloha, Ned

Hi, Lilly! Well, my approach might seem tedious to some people, but if it were me, I'd make a chart. Left to right is time, perhaps marked in 1-week intervals starting when you entered the hospital and ending on April 7 (your back-to-work target) or later. Bottom to top is how capable you are, with the bottom being flat-on-your-back in ICU hooked up to a respirator and the top being reasonably normal and the vertical intervals marked either in percentages or with specific abilities -- walk without assistance, pick up and carry items, get through the equivalent of a workday without needing to nap, actively participate in discussions, etc., depending on what your work entails. One of the upper lines, probably a little short of the top "normal," would be the point at which you're able to perform the duries of your job. Then if you start drawing your progress up to the present time, you'll probably see that your rate of improvement should get you to the "ready for work" point with time to spare! It's like being overwhelmed with countless things to do for the holidays with requirements constantly running through your head and thinking you'll never have time to finish them all. If you take a few minutes to make a list, then create a makeshift calendar or schedule, things fall into place and a lot of the mental stress is relieved. Making calendars and flowcharts is one of those few areas where I actually DO take my own advice. Besides, I enjoy playing with Excel and am constantly amazed that it's a Microsoft product. Aloha, Ned

I've heard doctors and nurses use the term "dwindling" in the same context. Aloha, Ned

Judy, you are EXACTLY the one to post. I'm glad you did, and I'm probably speaking for lots of others too. Knowing what factors were weighed when evaluating your application is very helpful, and also that it's nothing like the spend-down required to qualify for Medicaid (not to be confused with Medicare). Aloha, Ned