recce101

Hi, Shona, welcome to the group. As you know by now, we're concerned with larger issues than being "proper." But thanks for the background! At some point you'll probably want to put this info in a signature/profile which will attach automatically, saving you some repetitive typing every time you post. Here's how: Click on Profile above, scroll down to the Signature block, enter/update your information, scroll down further, ensure Always attach my signature is marked Yes, and click Submit at the very bottom. From now on, your profile will attach to every message you send. Aloha, Ned

I'm really sorry to hear of your difficulty, Lilly. Unfortunately I have no knowledge or experience with SRS. One thing was not clear to me -- did the bad stomach pain come only after the treatment, or was that part of the reason for the treatment" Aloha, Ned

COUNT ME IN ! Ned

Hi, Tammy, welcome! I'm a IIIb also, and thinking back on it, the 4th chemo cycle was my "low" spot too. I did go to 6 (Taxol/Carboplatin/Avastin), but your onc is right that for most people the benefit is attained by the end of the 4th cycle in first-line therapy. After I went on Avastin alone (another 8 months) most things gradually improved, and have continued to improve in my year on Tarceva. The only time I've wondered it it was all worth it was during that 4th chemo cycle toward the end of 2006. It may happen again, but I'm nowhere close to it now, feeling better than I have in more than 2 years. Aloha, Ned

Ellen, I'll definitely get into trouble for making a political comment here, but I absolutely love your #5!! Aloha, Ned

Renate, I'm one of those who has been wondering how you've doing. It's great that your cancer is under control, and I'm still hanging on to the hope that your overall condition will gradually improve with time. There was some discussion of acupuncture earlier -- did you ever try it for the neuropathy? Best wishes and Aloha, Ned

Happy Anniversary, Bruce! Aloha, Ned

Thanks for that, Lynn. It so reminds me of the problems we had with our son almost 30 years ago -- and of the two or three times when everything came together and the weight of the world was lifted from our shoulders, at least for a while. What a great feeling! Then came the day some years later when I suddenly realized he was able to do a few things better than I'd ever been able to do them. Next came a few more things, then still more things, and today there's not much left where dear old Dad retains the upper hand. When that started happening, I was surprised at my reaction. Instead of feeling envious or sad that my own performance was starting to slip, I felt immense pride in his development and the fact that he was now surpassing me. Our relationship, a little rocky for a while, is now a source of great satisfaction. I know Larry is very proud of you and of Nick. Aloha, Ned

Bobbie, I should have suggested in my other post that you present your question to Dr. West at cancergrace.org/forums. Tell him you've read the two articles I mentioned and ask if he has any additional thoughts to add. Since you're not his patient, he won't be giving you specific medical advice, but he will lay out the pros and cons in a very clear and objective manner. Either he or Dr. Goldberg (a radiation oncologist) should answer your question within 24 hours, even on the weekend! Aloha, Ned

Bobbie: From what I read, the benefit of prophylactic cranial irradiation (PCI) in Extensive Disease SCLC is quite clear -- certainly clearer than many other decisions we're faced with in lung cancer. Here's an excellent article by Dr. West on the subject: http://cancergrace.org/lung/2007/06/19/pci-for-ed-sclc/ For Limited Disease SCLC, the evidence is not as strong. See this: http://cancergrace.org/lung/2006/12/02/ ... -for-sclc/ Do you know if your diagnosis was changed from LD-SCLC to ED-SCLC when the spread to the lymph node was discovered? If so, that's probably why they say surgery is no longer an option, and that would weigh in favor of PCI. Best wishes and Aloha, Ned

But doesn't it feel good to start out another fresh 3 months! Looking for many more. Aloha, Ned

Hi, Gaye, welcome to the group! I had a huge amount of fluid around the right lung, and the symptoms from that (cough and shortness of breath) led to my diagnosis. It was drained during an outpatient thoracentesis, then again 2 weeks later during exploratory surgery. I was told that it would probably come back, but it didn't -- the chemo slowly eliminated it except for some small trapped ("loculated") pockets which are themselves slowly reducing. You asked for some straight talk, so let me tell you how I view my own cancer. Mine (adenocarcinoma stage IIIb) is inoperable and incurable, but I do not and will not use the word "terminal." I'm not even sure what that means, since I and every other person I know was terminal at birth. Life is inherently fatal! Anyone who has been around for a few decades undoubtedly has one or more "incurable" conditions that need to be managed with medications and/or lifestyle adjustments, and to me, cancer is another one of these. I expect to die with cancer, but not necessarily from it. In any event, at age 73 my remaining life expectancy would be limited even if I didn't have cancer. If nothing else, cancer has given me a wake-up call to repair any damage I may have caused to others during my life and make the best use of whatever years I may have left. From your description, your sister needs less of an adjustment than I did. To answer another question, you might want to do a more complete writeup on your sister in the "My Story" forum, than put a link to it in the profile/signature section which will automatically attach to every message you post -- something like in my profile/signature section below. Best wishes and Aloha, Ned

That's great, Muriel -- CONGRATULATIONS!! Aloha, Ned

No experience with Navelbine here either, but hoping for the best. Aloha, Ned

That's terrific, Nonni -- thanks for the update! Aloha, Ned

Hi, Cheryl, welcome to the group. I'm glad your dad's pain is finally under control and he's getting the treatment he needs. When you get the info, let us know what chemo drug(s) he'll be getting and we'll try to get you all off to a good start dealing with the side effects. Thanks for the offer on insurance billing questions. That subject does come up occasionally, not only here but on another site many of us 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. Aloha, Ned

That probably is right, 14 cents per KWH. That may seem high compared to what some of the others reported, but it's amazingly cheap by my standards! My bill last month was $488.08. Ned

It's sort of a stretch to call this a "fun" question, but here it is: What did you pay for electricity last month? So we have a better chance of comparing one area to another, try to boil it down to cents per kilowatt hour (KWH). If you don't find that directly on your bill, you can take your total bill and divide that by the total KWH you used for the month. Last month's cost for residential customers on Oahu was 32.3 cents per KWH, more than 50 percent higher than this time last year. Practically all of our electricity is produced by diesel generators and is therefore dependent on the market price of crude oil, not a good thing. The bright spot is that we don't have to worry about heating oil for the winter! Aloha, Ned

We're at about 4.40 for regular this week, no significant change from what it's been the past couple of months -- averaging 4.30 to 4.50 for regular. The hurricanes in the Gulf of Mexico didn't seem to affect our prices, since we have a couple of refineries here and don't depend on those near Houston. The big variable is the price of crude oil, which is shipped in. Aloha, Ned

Hi, welcome to the group! Don't sell yourself short. What you call "courage" is, I think, just basic human resourcefulness and spunk which comes bubbling to the surface when one is thrust into a situation from which there is no immediate escape. You have plenty of it too, I guarantee. I do agree that the compassion shared here is exceptional, superior to any other group I've known. We know this is the "real deal," and we connect on a fundamental level which bypasses nationality, social status, lifestyle, politics, and practically any other difference one can name. Best wishes and Aloha, Ned

Hi, Linda: I haven't had radiation myself, but from reading the reports of others I'd say painful swallowing is a very common side effect of radiation. I've heard others talk of a "magic mouthwash" that helps with the pain and makes it possible to eat and drink with less discomfort. I believe it's a prescription item, and there may be more than one version -- an experienced pharmacist would know. Perhaps a pharmacist could mix up something helpful Sunday, then when you're able to speak to the radiation oncologist or his office, they could call in a prescription for something stronger. Some who have used the magic mouthwash say it tastes pretty bad, but it was worth it since it allowed them to get some nourishment down the pipe. Even with the mouthwash, they said liquids and soft foods were all they could handle for a while, and the mouthwash needed to be used immediately before trying to eat or drink. Sorry I can't give you any first-hand advice, but maybe this will get you started until someone more knowledgeable responds. Aloha, Ned

Wow, Mitch, that's terrific! How about some new photos???? Aloha, Ned

Hi, welcome to the group! 1. The item Christine posted provides some excellent pointers. I first saw this set of recommendations several months ago (she may have posted it then too) and I've never encountered anything better. 2. Dads usually say that, but I'm sure he needs you more than he can express. If pain is well controlled, the passing can be quite beautiful and uplifting. What is done or said will vary considerably from one family to another, depending on individual beliefs and concepts -- including the "what happens next" question. But I'm convinced that in all cases when death or passing or transition is near, the sooner we can break through the barrier of actually using those difficult words, the better the experience will be for all. There are a couple of accounts posted on this board which I found exceptionally meaningful, and if I can locate them I'll send you the links in a PM (private message). It will show up as a "New message" in the line near the top of your screen that now probably says "No new messages." 3. A "sticky" (think of a stick pin on a bulletin board) is a tag that a moderator can apply to an especially useful topic thread so that it always appears near the top of a forum message list. Best wishes and Aloha, Ned

Thanks for the bump, Randy. As usual, I started reading before checking the date and thought wow, this guy's really got it together, I wonder why I haven't noticed him before? But also as usual (fortunately), I scrolled to the bottom before replying and got my answer. Support group = spirit pool...so true, so timely, so timeless. Aloha, Ned

Hi, Lori, welcome (or welcome back). I'm very sorry to hear that your cancer returned after what had seemed to be a successful surgery, and that you've had such a difficult time with your recent treatments. You didn't mention if you had a follow-up scan and exam during the year between your 2007 surgery and the 2008 ER visit. I would think that a new tumor that had grown to 4.5 cm within a year would have been visible on a 6-month CT scan, and possibly even on a 6-month chest x-ray. Fatigue is quite common during chemo, especially when combined with radiation. But you've had a rougher time than most, with the vomiting and chills and sweats. Be sure your oncologist knows that whatever medications he gave you to control nausea haven't been working. Sometimes the chemo nurses are in the best position to serve as a go-between, connecting a suffering patient with a busy doctor. If your September CT scan showed no change from the May scan even after 3 cycles of Taxol/Carbo/Avastin/Zometa, it could be that this particular combination is not working and a change is in order. That might help your side effects as well. I believe your oncologist is right about the colloidal silver. I'd never heard of it until today, but a quick Google check brought up a long list of references, some praising it as a cancer cure, others warning against it. So I went to the best source I know of for that sort of information, the "Integrative Medicine > About Herbs, Botanicals & Other Products" section of the Memorial Sloan-Kettering Cancer Center website: http://www.mskcc.org/mskcc/html/69189.cfm Sloan-Kettering is NOT against ALL supplements. Some they say are helpful for certain side effects, others they say are of no proven value but at least are not known to be harmful, while others they definitely warn against. Colloidal silver is in this last category, as you can read in the link. If I misinterpreted anything you said about the scans, my apologies. Best wishes and Aloha, Ned