recce101

Amazing. What a great example you are, Carole! Ned

Hi, Pamee, welcome to the group! I'm an Air Force retiree, from the days when Southeast Asia was the big thing. You have a great attitude, especially about the "terminal" word. I figure I was terminal at birth, and everybody I know was too. Good luck with the brain lesion. Even if it is a met, they can be treated quite successfully these days. Aloha, Ned

Thanks for joining and sharing, Gary. At any given time there are several times more unregistered "lurkers" browsing the site than there are registered members online. Nothing wrong with that, and I imagine many people who haven't been motivated to search out an online support group before want to make sure they're in a safe place before signing up. Aloha, Ned

Here's an older post of mine, before the heartburn ramped up from the Tarceva, that might have some of what you're looking for: http://lungevity.org/l_community/viewto ... 878#316878 My ideal weight is 175 according to our family physician, and for many years I'd been above that, around 190 or so at the highest point. With some effort I got it down to 180-182, where it stabilized for a few years, and my efforts to get it lower were unsuccessful. Then in 2005 my continued efforts started to pay off (or so I thought — I told myself that my "set-point" had changed) and I had decreased to my 175 goal about the time I developed the nagging cough that led to my LC diagnosis. By the time I saw my oncologist I was down to about 170, and when asked the standard question about recent weight loss I said yes, but that I'd been exercising and having more success watching my food intake, so the loss was intentional (duh). Up to that point I hadn't really known about or thought about the correlation between cancer, calorie intake, and weight, but I learned in a hurry. I dipped to around 160 at one point, but during the roughest chemo months I was able to stay close to 170 thanks to Boost, Carnation Instant Breakfast mix, Ensure, and the various lower-priced clones. For a while during that period I had to drink three of the 350-calorie bottles/cans every day along with eating everything else I could get down in order to maintain that 170. Currently I'm on a much more normal diet and averaging 172 to 175, so my onc and family doc, looking at it from opposite directions, are both happy. Aloha, Ned

Hi! I can't answer your question today, but in a week or so I might be able to. I was diagnosed with IIIb adenocarcinoma 28 months ago and have been on one treatment or another that entire time, except the past 7 days after I discontinued Tarceva. I had major eating problems on Taxol/Carbo/Avastin, minor problems on Avastin alone, and moderate problems on Tarceva. Not so much because of poor appetite, but due to painful swallowing the first few months of treatment, a continuously sensitive stomach which wouldn't accept a "normal" amount of food, plus a lot of heartburn on Tarceva the past 16 months which required me to cut way back on some favorite foods. But this weekend, for the first time since I started treatment, my taste seems essentially normal, and my stomach feels great, even after making up for lost time on the yummy tomatoes I had to cut out last year. I believe the cancer itself has caused me to need more calories to maintain weight, but that the eating difficulties have been caused mainly by the treatments. So with this new and very welcome baseline, and the fact that I'm starting Alimta tomorrow (today your time), it will be interesting to see what changes occur. I'll certainly post my experiences with thiis new phase. Aloha, Ned

Now how did I miss this one? Happy Belated Birthday, Judy, or just make it a 2-day celebration! Aloha, Ned

Hi, happy to meet you! This is an IDEAL question for the physicians at cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, 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. If you know your mom's NSCLC subtype (adenocarcinoma, squamous cell carcinoma, or large cell carcinoma) you should probably add that info to your question, since that would have a bearing on the options available. Also, if she has any peripheral neuropathy (numbness and tingling in the hands and/or feet) still present from previous treatments, you might want to state that, since there's a chance Taxol would make it worse, perhaps permanently. About your comment (if I read it correctly) that first-line use of Cisplatin, which can create openings in the blood-brain barrier, is the reason cancer cells were then able to pass into the brain and cause brain mets: Admittedly I don't have much knowledge of, or any first-hand experience with, brain mets since I haven't yet been faced with that problem, but that doesn't sound right to me. Cancer cells don't seem to have much difficulty crossing the BBB, even one that's supposedly intact, and plenty of people are diagnosed with brain mets before they've ever had any form of chemo. What I have read about Cisplatin is that it's sometimes used because it can cross the BBB and treat existing brain mets on its own and/or open the way for other anti-cancer drugs to follow. Again, I'm not saying you're wrong, but just taking you up on the offer to speak up if something doesn't sound right. Maybe this is another good question for Dr. West. Congratulations to your mom and Aloha to you both, Ned

Barbara: You may have seen this post in Dr.West's "What I Really Do" series, but it might help to look at it again: http://cancergrace.org/lung/2008/10/22/wird-egfr-rash/ Reducing the Tarceva dose is very commonly done for patients who develop rash bordering on intolerable, as well as stopping the drug entirely for a few days before resuming at a lower dose. Unlike many drugs, it seems there is a correlation between the effectiveness of Tarceva and the severity of side effects (particularly the rash), and those people who get a raging rash on 150mg are very likely to get good results from a dose of 100mg or even lower. Here's an excerpt from the above link: Ned

Hi, Kneesaa, welcome! I agree that there were some very fortunate events in your story. That contrasts with all too many members whose diagnosis came after months of false leads and perhaps even some denial on the part of their doctors. Let us know how you're doing with the chemo. Many of us have had that same combination or one very similar, and we can help you with the side effects. Are you also getting a Neulasta injection the day after the infusion? Best wishes and Aloha, Ned

Thanks for all the info — makes me comfortable with my inclination to skip the Neulasta unless a blood test indicates I really need it. If a few days of fatigue is my main side effect each cycle, I can plan around that. I've been off the Tarceva (and Doxycycline) for 5 days and am basking in a bit of normalcy at the moment. Though my skin issues have been pretty much under control the past several months, there were a few "on the edge" spots that are now completely resolved. Even better, my sense of taste is back almost completely and there's no more heartburn and "what have you done?" feeling when food hits the stomach. We had barbecue ribs last night, and oh were they good! And to top it all off, my dear wife just now brought in my favorite local breakfast of eggs, rice, corned beef hash patties, and ketchup which I haven't been able to tolerate for a long, long time. Well, you know my motto, "celebrate anytime you can," and that's what I'm doing this weekend. Alimta starts Tuesday. Aloha, Ned

My thoughts exactly, shortly after I posted my first message one predawn September morning in 2006. Please also check out cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). The site has a wealth of information, 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. Aloha, Ned

Welcome to the group! At the beginning there's just too much coming at you to take in all at once, but you'll start to feel more in control before long. Sounds impossible now, but it's true. Keep us updated as you learn more about your situation, and never hesitate to ask plenty of questions. We not only have a clue, we get it and we understand. Aloha, Ned

Did you receive a Neulasta injection the day after your Alimta infusions to boost your white blood cell numbers? If so, was it scheduled automatically from the outset, or was it added later because of WBC issues? I'm starting Alimta next Tuesday, and my onc is willing to either give it automatically the next day or hold off on the injection unless/until needed, whichever I prefer. Back when I was on Taxol/Carbo/Avastin I got Neulasta automatically the day after each infusion, but I'd like to avoid those extra trips this time if I can. Any opinions or experiences to share? Ned

That's great — and I'm glad to see that Denise has lent you her Happy Dancer! Aloha, Ned

That's great, Denise. Yep, you've got this thing figured out — you gotta celebrate when you can! Aloha, Ned

CeeDee, this article by Dr. West includes a discussion of maintenance Avastin: http://cancergrace.org/lung/2008/10/12/ ... -2nd-line/ This portion of the first paragraph sums it up well: Since there's some controversy as to the effectiveness of maintenance Avastin, an onc who does not offer it cannot be said to be "wrong," but a growing number of oncs do recommend it. Ned

That's for sure. I'm glad you spoke up because yes, Avastin is quite common as a maintenance therapy every 21 days after completing Taxol/Carbo/Avastin. I'll find some references for you on cancergrace.org and PM or post them later this evening. Ned

Hi, Trayce, welcome to the group. Are you taking anything for the peripheral neuropathy? I had a fairly severe bout of it which came on suddenly after my 6th infusion of Taxol, but Neurontin (gabapentin) was quite helpful. The tingling and stabbing pains resolved within a few days, though the numbness hung around for several months. It's good that you caught this early. Stage IIa has a much more favorable prognosis than the III or IV where most of us start, but even then, your "new normal" may never be what your "old normal" was. Aloha, Ned

The main thing you can count on for just about any chemo, including chemo plus radiation, is fatigue. That generally doesn't start for a day or two after the chemo infusion, because a steroid (like Decadron) is typically included in the IV premeds, and the fatigue isn't much felt until that starts to wear off. In fact, many people are really "up" after their infusion and eat like a horse that night, probably because of the steroid and a feeling of relief that the first session went well. How long the fatigue lasts and how bothersome it gets varies a lot from one patient to another, but most are starting to feel relatively normal again within a week. The other side effects depend a lot on the specific chemo given, so it's hard to make any general comments on those. Let us know what you find out about the specific drugs planned. Best wishes and Aloha, Ned

Yes, unfortunately it happens. When we start a chemo program, any cancer cells that are not killed outright start to mutate in an attempt to survive that particular chemo. If these mutated cells take hold somewhere else in the body, the tumor growing there may be resistant to that chemo while the older tumors are still vulnerable and continue to shrink. In my right lung, the original tumor appears to be dead and is probably just scar tissue, but now a few nodules have appeared elsewhere in the lung and are starting to grow. I'll find out Tuesday if they've grown enough for me to need a change in treatment. Aloha, Ned

Sounds good, Vitis. "Looking forward" to a lobectomy is not the term most people would use, but you've got the right idea, since it's probably being done with curative intent. If you're getting a full thoracotomy instead of the scope procedure, then I have 3 helpful hints for you: 1. Do any furniture rearranging you might need before you go to the hospital. I moved a recliner into our bedroom and used that for several weeks after surgery. It's much easier to get in and out of a recliner than a bed since you can eliminate most of the twisting action. 2. Move frequently used items up or down to a level somewhere between waist and shoulder height. This will allow you to be relatively self-sufficient and you wou't have to be constantly asking people to get things for you. 3. Think of your post-surgery pain medications as not only pain pills but also high-potency constipation pills. Stock up now on whatever items you've found helpful in the past — stool softeners, prunes, milk of magnesia, whatever. They tell you when using pain meds to stay ahead of the pain. Well, it's just as important to stay ahead of the constipation. You don't want a major problem with that when every little strain hurts. If you think I'm speaking from experience here, I am! Good luck and Aloha, Ned

Alyssa, not only can food taste bad, but with some chemos eating/swallowing can be actually painful. The main objective should be to pack as many calories as possible into the foods and/or beverages which she CAN tolerate. If she's getting tired of Ensure, Boost, or one of the lower-priced clones, try the various flavored packets of Carnation Instant Breakfast mixed in some sort of milk or milk substitute. Very tasty compared to Ensure. Here's something I wrote a while back which explains the situation from a patient's perspective: http://lungevity.org/l_community/viewto ... 878#316878 Ned

Genentech, the company which markets Tarceva in the U.S., has a program that provides assistance to patients who are uninsured or who cannot aford their insurance co-pay costs. Start here: http://www.gene.com/gene/products/access/ Also be sure to check out the link in cat127's response. If any of that reading brings up additional questions, which it probably will, don't hesitate to ask. Aloha, Ned

Jude, do this to see all of Don's messages: Click "Search" in the upper part of the screen just below the thick horizontal line, then in the second box under "Search Query" type Don M, in the lower part of the "Search Options" box change "Display results as" from "Topics" to "Posts," change "Return first" to "All available," then click "Search" at the bottom. This should give you the full text of Don's 3946 messages spread across (on my computer) 53 pages. They are in reverse chronological order, with the last post listed being his earliest, 7 December 2003. If you want to read the entire topic thread, click on the link marked "Subject" at the top of each message. If you do a right click and select "Open in new tab" or "Open in new window," your original list will remain undisturbed and you can come back to it quickly by returning to that window. You can do the same thing for your own messages, putting your username in the second "Search query" box. Aloha, Ned

Ibuprofen (Advil) got some more votes in your other thread here: http://lungevity.org/l_community/viewto ... highlight= I'm not a pharmacist, but I found this on the Web: Ned