recce101

Janet, welcome to the group. You're a winner for sure! Aloha, Ned

Good idea, Connie -- a perspective enhancer! I've mentioned in a couple of posts, and there's a reference to it in my profile, that I've had Meniere's Disease since 1994. I should put "probably" in there somewhere, because no one knows for sure. Meniere's is an "idiopathic" inner ear disease, meaning there's no known cause, and the diagnosis, if you can call it that, is based on the presence of four specific symptoms when no underlying factor such as tumor, injury, bacterial infection, or virus can be found. It's believed to be caused by a buildup of fluid pressure in the inner ear, but with no good explanation as to why, there's no effective treatment for the disorder. The symptoms are (1) progressive, irreversible hearing loss in one or both ears, (2) tinnitus, a constant ringing/roaring/whooshing which seems to be coming from the affected ear but more likely is being produced by the brain, (3) a feeling of fullness or pressure in the ear even when no sinus or eustachian tube congestion is present, and (4) sudden, totally debilitating attacks of spinning vertigo and nausea which occur without warning and last for several hours or longer. I'm happy to say that I've found a medication (meclizine) that depresses the vestibular system enough to prevent these vertigo-nausea episodes as long as I faithfully take it three times a day, and I haven't had a full-blown attack for several years. Unfortunately, many (probably most) people cannot tolerate that much meclizine. Here's something I wrote to my online Meniere's Disease discussion group in September 2006, shortly before I joined the LCSC. The last paragraph may puzzle some of you, and following the quote I'll try to explain why I still feel that way: I can't guarantee I'll feel that way a year or two from now -- it depends on what my cancer does. It may shorten my life, but that's not my primary concern. I can at least plan a little bit into the future. If I'm feeling fairly decent this week, there's a good probability I'll be feeling about the same a week or two from now, and I can plan accordingly. But with Meniere's, until I found the medication that would keep the vertigo episodes at bay, planning ahead became difficult or even impossible. There was no way to tell when an attack might be coming. I could feel fine one minute, and the next minute be on the floor sweating profusely and digging a sick bag out of my pocket. A number of these spectacles occurred in public places, and as a result I cut my business, community, and social activities to an absolute minimum. Knowing that Meniere's is not life-threatening provides little consolation to those who have it. In fact, that's probably the reason so little is known about the condition. It's not as rare as some might think, but there's little funding for research, and the physicians specially trained for vestibular disorders (neurotologists, not to be confused with neurologists) are few and far between. There wasn't a single one in the state of Hawaii when I was actively seeking help, and now I think there's just one. When I watch Nova on PBS and see one of those photos of a black hole, what I think of is Meniere's. That's enough for now -- time for my meclizine. Aloha, Ned

From hearrean's profile: Ken: Sometimes the most reasonable thing we can say about such weirdnesses is "go figure!" It's as if your body (or something with a lot of influence over it) knew it needed the radiation for a while longer, but knew it needed nourishment now, and figured out a way for it to have both without resorting to the stomach tube. Good news in more ways than one! Aloha, Ned

Hi, Sandra! IIIB here. Aloha, Ned

Teri, thanks for the link. A lot of water's gone under the bridge since that time. In some ways it seems an eternity -- in other ways, more like last week. I love your posts, all of them. Aloha, Ned

Paul, I'm very sorry to hear this disappointing news. Let's all hope and expect Michael to get a great response from Alimta. It's probably the drug I'll move to when Tarceva stops doing its thing for me. Best wishes and Aloha, Ned

I'm very sorry about your dad, and I can understand your mom's concern. At the risk of pushing too hard, let me just say that if your dad died of lung cancer 10-15 or more years ago, a lot has changed since then. New drugs are available, and routinely given, that reduce and even eliminate some of the worst side effects of chemo (such as nausea). If your mom is willing to give it a try, then everything we've written up to this point still applies. But if your mom continues to decline treatment, I can understand that too. I can imagine situations where I would make the same choice. You should make initial arrangements for hospice support early, before she actually has need for pain medication. You should also be aware that in some cases, such as bone metastases, radiation treatments can be very effective in relieving localized pain even if the person is declining chemo and other treatments for the basic cancer. With this I've about reached the limit of my first-hand knowledge, but there are many others here who can help you through the weeks ahead. My very best wishes and Aloha for you and your mom. Ned

Judy, the Inspirational forum is a GREAT place for a post like this! Reaching out to others with a similar affliction is not only helpful to the "reachee," it's therapeutic for the "reacher" as well. Helps us get out of ourselves, connect with others, and see life in a larger perspective. That positive, healing energy we're directing toward others is flowing through us too! Aloha, Ned

Thank you for the additional info. Adenocarcinoma is the most common form of non-small cell lung cancer (NSCLC) and the presence of the mets would make your mom stage IV. Although the survival statistics for advanced lung cancer are not good, please keep in mind that there are always some who "beat the odds" and, with newer treatments, those numbers are increasing. Maybe your mom would be willing to start a treatment program (probably chemo plus brain radiation) to see how it goes. Some people have excellent response with very mild side effects, and they are the ones most likely to stay on the winning side of the survival line. You saw the reply from Joe B, and you should be getting some others too. My Aloha, Ned

Hi, welcome to the LCSC! We have a number of members who are still here and doing well years after they were given a similar prognosis. They went for second, third, even fourth opinions in some cases before finding the team of doctors that was right for them. Give us as many specifics as possible, and those in the group with relevant first-hand experience as patients or caregivers are sure to respond. Read through some of the profiles at the bottom of our messages to see what sort of information would be good to include. For now you can just put that in a post within this topic thread, then later we can help you transfer the info to a profile to avoid repetitive typing. Some of the items to include would be: Other significant health issues if any, the symptoms which led to the medical evaluation that resulted in the cancer diagnosis, the specific diagnosis (SCLC or NSCLC with stage and cell subtype if known), what tests were done to arrive at the diagnosis (CT scan, PET scan, brain MRI, bone scan, biopsy, etc.), any pertinent quotes from the written reports of those tests/scans (your mom is entitled to have these), the type of medical facility doing the evaluation, what specific treatment options were discussed, etc. I doubt that you have all of that information at hand right now, but any part of it would be good as a starter. Since your mom "looks and acts healthy" I believe it's appropriate to be very aggressive, and we've got some real winners in this group who can help you in that direction! Best wishes and Aloha, Ned

Hi, Christine: I didn't feel anything at all until about the 5th day. Even that is probably earlier than average, which I've read is about the 8th day. Mine peaked at around 3 weeks and has slowly decreased from there. Aloha, Ned

Hi, Dee, welcome to the group! I must say you've been rather busy the last few years. Feels like you've been supporting the medical profession single-handedly, doesn't it? One question that comes to mind is, do they know what type of cancer is in your lungs? Mets from the previous stomach cancer, or a new primary lung cancer? That would probably make a difference in the treatment, and if a biopsy hasn't already been done they probably won't know for sure until tissue samples are taken during the surgery. I'm thinking those details may be in your profile which somehow failed to post. A lot of people have trouble with the profile feature on the first attempt, so here's a step-by-step that I keep handy to copy-paste for such occasions: Click on My 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. If you also want to attach it to messages you've already sent, go back to EACH of them, click the Edit button (which appears with all of YOUR messages), scroll down and check Attach signature, then Submit. You have a great attitude, and you're probably a pro at surgery recovery, but you might want to check the account of my August 2006 thoracotomy... http://onctalk.com/bbPress/topic.php?id=460&replies=3 ...which contains some hints on getting your home ready for your return. Best wishes and Aloha, Ned

A valid concern. Life is a series of trade-offs from start to finish, and that's magnified by cancer. But I think you've made good choices so far, and it's time to go back to the subject you assigned to this topic thread and say CONGRATULATIONS!! Aloha, Ned

Bless you, Derek. Please stay with us for a while. I know your grandfather was very proud of you. Aloha, Ned

I assume the youth pastor is herself young? One thing I would be wondering is why she wrote such a piece in the first place. It seemed a little forced, hence the pat phrases, as if it were an assignment rather than something from the heart. She probably would be surprised, maybe even distressed, to hear that some thought it offensive or callous or insensitive. Most likely she wrote it with very good intentions, but it's clear that she doesn't have a deep understanding of all the issues involved. If you believe she has the potential to learn and grow, maybe you SHOULD try to become a friend for her benefit if not yours. Or write your own article for the bulletin, not directly criticizing hers but hitchhiking off of it and exploring grief in a more meaningful way. I must admit that the "God's plan" part bothers me most of all. But that's just me, and I won't go there today. My Aloha, Ned

Hi, and welcome! Here's another IIIB profile for you to read. After you get a treatment plan, let us know the specifics and you'll get lots of been-there-done-that perspective from the group. Best wishes and Aloha, Ned

Delighted that the surgery went well! Your mom is off to a good start, and now we can look for and expect shrinkage when she starts the chemo. But yes, it will seem like a constant battle, or as some of us prefer to say, the "new normal." Aloha, Ned

When someone as cute as Jen contradicts something I've said, it gets my attention! It sent me looking for an authoritative source, and I found this from the American Joint Committee on Cancer website (www.cancerstaging.org): "The formal "stage" of a cancer does not change over time, even if the cancer progresses. A cancer that returns or spreads is still referred to by the stage it was given when it first diagnosed. Sometimes, after a period of remission (cancer being undetectable) for certain cancers, if more treatment is planned, a doctor might restage the cancer. The same process that was done when the cancer was first diagnosed will be repeated: exams, imaging tests, biopsies, and possibly surgery to restage the cancer. If the cancer is restaged, the new stage will be recorded with a lower case "r" before the restaged designation. As previously stated, this is not done often." So I guess each of our statements was correct but incomplete. Aloha, Ned

Here's a post from a 5-year SCLC survivor which is a great example: http://lungevity.org/l_community/viewtopic.php?t=18395 I've seen posts from other long-term SCLC members, and some of them should respond before long. Good luck and Aloha, Ned

Hi, welcome to the group! I second the suggestion to visit 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. As blueeye indicated, there may be some terminology confusion that you need to clear up to be sure you're getting the right information. Small cell lung cancer (SCLC) is categorized as either limited or extensive, with extensive meaning there are mets outside the chest (such as in the brain). Stages I, II, III, and IV apply only to non-small cell lung cancer (NSCLC), with stage IV meaning mets are present. So technically, and to avoid confusion, the term "stage IV" should not be used as a general synonym for metastatic lung cancer, but should be associated only with the non-small cell types (adenocarcinoma, squamous cell, or large cell). Unless there was an error, an extensive or stage IV diagnosis would not be changed even if the mets are successfully treated or removed. The assumption is that for the mets to have arrived there in the first place, they would have had to travel in the bloodstream, and that some undetectable malignant cells could still be in the bloodstream looking for a place to land even after a course of chemo. As time passes, this becomes less and less likely, and a person's initial staging seems to become less relevant. My impression (I could be wrong) is that the staging is useful mainly during the early weeks to determine the most appropriate treatment, whether or not surgery is indicated, and to sort out insurance and Medicare issues. Regarding your statistics/prognosis question, I've already used my daily rant allocation in response to another new member -- scroll down this thread: http://lchelp.org/l_community/viewtopic ... &highlight Best wishes and Aloha, Ned

Welcome to the LCSC! There's a great deal to learn at first, but as you become more familiar with the medical jargon the picture tends to clear and it will become easier for you to know what you're dealing with. The best reference I've found on NSCLC staging is here... http://www.emedicine.com/radio/topic807 ... nm_staging ...and every time I go back to it I understand something new that went over my head the previous time. From what you wrote, I would guess that you're IIIA due to involvement of the mediastinal lymph nodes (mediastinal meaning towards the center of the chest). This may be operable at some point, for example after a course of chemo and/or radiation, and it's even potentially curable. Mine is IIIB for a couple of reasons, and generally considered inoperable and incurable, but even those two words are not as foreboding as they would seem at first glance. Here's something I wrote 16 months ago upon diagnosis, and I still feel the same way today: http://lchelp.org/l_community/viewtopic ... highlight= It's very encouraging that your scans don't show any suspicious activity outside of your chest. If you haven't already, you might be getting an MRI of the brain to check for any lesions there, as the brain is a favorite site for adenocarcimona mets. Usually those can be effectively handled with radiation. Let us know what the onc says, and if you're given any sort of statistics in terms of months or years, take them with a big grain of salt. They are based on historical averages/medians of a large number of people who received a similar diagnosis in the past, and are not directly applicable to any one individual. I never asked, and the "information" was never forced upon me. Best wishes and Aloha, Ned

Katie, I see you posted today. Hope that means you're feeling better! Aloha, Ned

Even if your grandfather pulls through this latest crisis, you'll always be grateful that you had the discussion. While he may have done little of the talking, I'm sure he heard your every word. Many people have great difficulty bringing up the subject of death, passing, or whatever term one prefers. I know I did when my dad was deteriorating near the end of a lengthy hospital stay for multiple problems. But he was still able to communicate, and he started the conversation in his typical light-hearted way with "I sure hope I kick the bucket pretty soon." That opened the floodgates for an intense and long-needed exchange that brought peace to us both. Within a few days he became unresponsive and then was gone. My best to your entire family. Aloha, Ned

Try this the next time you see said friend: "Somebody's been making some really stupid comments about [fill in the blank] and using your name! I just thought you ought to know." Aloha, Ned

Expecting a good one, Becky! Aloha, Ned