recce101

Sorry to hear about the downturn, KG. My best to you both. Aloha, Ned

Hi, Mary: I saw your post, also Kasey's and Welthy's replies, and figured I'd jump in for a moment. Welthy summed it up pretty well. The chemo drugs administered by IV are included in the oncologist's charges, therefore paid by Medicare and whatever Medicare supplement you may have. Your out-of-pocket costs for the chemo treatments could range from zero up to rather significant, depending on how much of the remaining 20% of Medicare allowable charges the supplement pays. While I was on chemo, the only drugs I had to buy from my local pharmacy were Ativan (anti-nausea medication which after two Taxol/Carbo/Avastin cycles I decided I didn't need and didn't refill), oral antibiotics (prescribed three separate times during my chemo program for skin breaks), and Neurontin (for neuropathy, which I'm still taking). I'm now off the IV treatments and on oral Tarceva, so Tarceva is added to my list of prescription medications, along with all the ointments, creams, pills, and tapes needed to counter Tarceva's side effects. The Tarceva itself is not handled by my local pharmacy, but by a specialized pharmacy network which delivers via FedEx. It's subject to the same copay criteria as my other prescription medications (my drug plan is under Tricare, not Medicare Part D). While we're on the subject of $$$$, you should be aware that many, probably most, of the major drug companies have programs to provide their products at reduced cost or even free of charge in certain cases -- people without insurance, or who have reached the lifetime max of their insurance, or cannot afford the copays, etc. Some of our members have used these services, but I don't have any details on exactly how they work. My IMPRESSION is (no facts to back this up) that the eligibility requirements are not nearly as strict as if someone is applying for Medicaid, which a taxpayer-supported government program -- i.e., you don't have to impoverish yourself first. Something for all of us to keep in the back of the mind. About knowing which forum to post something in, I wouldn't worry about it. You could use "General" for everything and do just fine. I think most of us who write a lot of replies use the "View posts since last visit" feature and will see all the new posts regardless of which forum they're in. If your title is descriptive, you'll get answers, and one of the moderators will move your message if they think another forum would be more appropriate. Nobody around here nitpicks stuff like that. Aloha, Ned

Hi, Michael: Happy things are going well with the Alimta so far. That drug is probably in the future for a lot of us, so I hope you'll keep those updates coming! I don't know what Alimta costs. Do you think it could be more expensive than Avastin? According to my quarterly Medicare summaries, the "Amount Charged" for each dose of Avastin (not counting the saline and infusion charges) was $10080, reduced to a "Medicare Approved" $6825. Of that figure, Medicare paid 80% and Tricare for Life (military retiree) paid the remaining 20%. Multiply that by 18 treatments and the total is getting up there. The second most expensive item was the Neulasta injection, which I had 6 times for $3656 ($2164) per shot. So I guess we're getting our money's worth. Aloha, Ned

I haven't had radiation, but I did have an irritated mouth, throat, and esophagus from chemo (probably the Taxol) which caused problems swallowing. Anything grainy (bread, meat, some beans) was irritating, anything with sharp edges (nuts, most raw vegetables, some raw fruits) was painful. My favorites, in fact practically my entire diet for a while, consisted of things like creamy soups (lukewarm, no large or sharp-edged chunks, a minimum of meat, sometimes run through the blender before heating), soft fruits like peach slices and pear slices (canned or packed in individual cups with juice or syrup), smooth puddings, Ensure/Boost or their less expensive clones, Carnation Instant Breakfast (many flavors available) mixed in milk, and ice cream (no nuts or other chunky things). Basically I had my own stash of tried-and-true foods for snacks and mealtimes, then if the family was having something that looked interesting and tolerable I might take just a little -- but I tried to prevent my limitations from affecting others as much as possible. Nevertheless, it was a difficult time for my wife as well as myself. Good luck and Aloha, Ned

Hi, Mary: You two have certainly had a string of difficult and frustrating days, and I know you're concerned that the chemo/radiation treatments are being delayed another week, this time because of the angiogram and possible stent placement on the 18th. I had similar concerns myself -- had to wait a month to recover from exploratory surgery before I could start chemo -- and I think a good percentage of our members have had the same kind of worry, that they finally had a diagnosis but then had to wait for one thing or another before they could start treatment. But in your husband's case, the extra week of waiting may be to his advantage if the cardio team can find and correct the cause of his shortness of breath. Improved energy and stamina will help him tolerate the treatments and at the same time strengthen his own natural defenses against cancer. I hope you can both relax and maybe even do some fun stuff this weekend! Aloha, Ned

I think most people are awkward and uncomfortable just bringing up the "C" word, and they find themselves blurting out something without following the "engage brain before operating mouth" rule. Clueless? Yes. Insensitive? Maybe. Hurtful? Not intentionally. I try to give people a LOT of slack if I believe their intentions are good. The next step would be an attempt to educate them, if not directly, then a day or so later in a subtle and oblique way. After a couple of these, if they still don't "get it," it's probably time to modify the relationship -- but without burning any bridges, because they may "get it" later and become a true friend. Aloha from Ned, who as always is far better at giving advice than taking it!

You've ABSOLUTELY, TOTALLY, MADE MY DAY! So happy for you, and so happy for all who are given a little more hope through your example. With an abundance of Aloha, Ned

Hi, Renate: Thanks for posting your profile. It's a good thing the oncologist ordered at CT scan to check out the "likely multiple pulmonary nodules" -- chest x-rays frequently don't show problems that are just beginning. You mentioned that "my profile does not show in my first post." If you want it to attach to the messages you posted before writing the profile, go back to EACH of those early posts, click the Edit button (which appears with all of YOUR messages), scroll down and check Attach signature, then Submit. Aloha, Ned

I won't even ask what "M" means! Aloha, Ned

Hi again, Mary: The LCSC excels in sharing first-hand information concerning symptoms, drug side effects, and other lung cancer issues from the perspective of a patient or family member. No matter what the condition or treatment, we are sure to have members who have "been there, done that" and are ready to help you along this new journey. But for detailed medical information, I highly recommend that you 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. Now let's go down your list: Biopsies/tests. Generally speaking, a tissue sample (biopsy) is required before treatment is begun, not only to confirm the existence of cancer, but also to determine the specific cell type, as the treatment may vary with the type. But once treatment has begun, response to treatment is measured by scans, usually CT and/or PET. You should ask for copies of the pathology reports (for biopsies) and radiology reports (for scans). Even though you won't understand all of the terminology, you'll be able to determine how sure the pathologist or radiologist is of the findings. Scan results are frequently ambiguous, and that's reflected in the report. Pathology reports can be "inconclusive," especially if exactly the right spot was not sampled, but if a report definitely identifies a specific cancer cell type, I'd be inclined to believe it. Chemo and nausea. I've had nausea from anesthesia (before cancer became part of my life), but I've never had the slightest tendency toward nausea with any of my chemo infusions. Anti-nausea medication is routinely given at the beginning of chemo sessions, and your husband may also be prescribed something to take at home. He should take it on schedule, not wait until he feels sick. NSCLC types. OncTalk is the best source for the specifics on adenocarcinoma (which includes BAC and I won't try to spell what that stands for), squamous cell carcinoma, and large cell carcinoma. Nutrition. You'll get all sorts of opinions on this one. Many oncologists discourage taking special supplements, since some of them are thought to interfere with the action of certain chemos, and they recommend at most just a standard multi-vitamin along with a good diet. If you husband is having trouble maintaining weight due to taste, swallowing, or digestive problems while on treatment, most people would tell you that maintaining weight is more important than a balanced diet for that period of time. Ensure or one of its clones, or Carnation Instant Breakfast powder mixed in dairy or soy milk, can be very useful. You'll probably get some more suggestions when our mainlanders wake up in the morning. Aloha, Ned

Hi, Mary, welcome to the group! Reading your profile, I was getting frustrated with the crossed signals right along side of you. But things should be settling down now that treatment is about to start. I also had Taxol/Carboplatin, but since I didn't have radiation, my sessions were 3 weeks apart instead of the weekly infusion your husband will be getting in combination with the "daily" radiation. I noticed you also posted in the NSCLC forum, so I'll move there and see if I can help you find answers to some of your questions. Aloha, Ned

Chris, at the very beginning of your profile/signature block, type and at the very end type [/size ]. Note that you use [b]square[/b] brackets, not parentheses. Also, do not put a space before the right bracket -- I had to do that so the codes wouldn't take effect and disappear. With the codes properly inserted (no spaces), your profile would look like this: Aug 28, 2007 -- The beginning of my Adventure. Oct 3, 2007 -- CT Scan reveals a large mass in left lung lobe. its form factor is 8.0 x 5.2 x 8.5 CMs Oct 23, 2007 etc. etc. etc. You can shrink it further by using bold or a different color for the dates, then eliminating the blank lines. Look at the top of your message reply window -- the same codes that are there can be used for the profile. Aloha, Ned

Hi, Vernon, it's me again. I saw your question before Muriel had a chance to send the PM. It's not HTML, at least not like any HTML I've ever seen. And it uses square brackets [ ] to enclose the code, not angle brackets < > like HTML does. The codes are shown at the top of the "Post a new topic" and "Post a reply" entry screens (you can run your mouse over the buttons and get a quick education), and the same codes work in the profile/signature entry window although there are no buttons at the top of that screen to help you out. If you wanted your profile to display maroon and size 8, you would code it like this (disregard the space before the right bracket in the codes -- I did that so they wouldn't take effect and disappear): August 2003 Colon Cancer diagnosed. October 2003 Operation to remove Cancer. etc. etc. etc.[/color ][/size ] And with the codes properly entered (no spaces), the lines will display like this: August 2003 Colon Cancer diagnosed. October 2003 Operation to remove Cancer. etc. etc. etc. You can practice using a new topic or reply entry screen, which has a preview function, then when you're satisfied, instead of posting your test for the world to see, just copy everything in the entry window and paste it into the profile/signature window. Hope that's reasonably clear. Aloha, Ned

Vernon, welcome to the group! I'm stage IIIB, and as you can see from my profile I'm close to the 17 month point and doing well. If you can answer the questions Mary listed, you'll hear about, and probably directly from, others whose situations mirror your own. Aloha, Ned

As I read your post, your sister chose NO treatment, but your husband is opting for an AGRESSIVE treatment, chemo/radiation. And from your description of what he said last night, I'm even more convinced that this MAY be the best approach for him. I don't think it's a death sentence, any more than life itself is. I don't think I'd be able to know that for sure. All I can say is that since 9/1/2006 I've been a lot more respectful of, and receptive to, intuition than in my previous 71 years. Aloha, Ned

MM, this will be somewhat different from the other messages you've received. And, like Susan, this is way above my pay grade too. But here goes: You know how we frequently advise people to ignore statistics, they're just averages, everyone is different, etc...? When we say those things we're usually speaking to a new member who has received a depressing prognosis from an insensitive doctor, but that same approach can apply to other situations too. I have the utmost respect for the points of view expressed by Adrian and everyone else, but please consider this. Your husband seems to have all the data, and he knows that statistically the best chance of a good outcome for people with his diagnosis involves surgery, but something is telling him "no." And that something may not be simply fear. Perhaps he feels intuitively that FOR HIM, with his other respiratory problems, surgery is NOT the right choice. And, he may be right -- not statistically, not for most people, but for him. If you think there's any merit in that line of thought, and your husband is firm in his decision, then perhaps the best way for you to support his decision is for you to truly accept that same reasoning. Then you would both be in synch, with no spoken or unspoken pushing on your part and pushing back on his part, and you can both plan for and expect great results from chemo and radiation. After all, that's pretty agressive treatment too. Aloha, Ned

Hi, Chris, welcome to the LCSC. I'm glad your found us! It seems you've been getting good treatment after sort of a rough start, so let's hope for and expect continued response from your next two chemos. If you can enter your symptom/diagnosis/treatment/scan data into a profile like you see at the bottom of our messages, adding more dates if possible, you'll help us give you better answers and also save yourself some repetitive typing each time you post. Here's how: 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. Let us know how it goes Thursday. Aloha, Ned

Judy: Here's how I did your profile sample modification in my last message (except here I've added a space before the right bracket of each closing code so the codes won't take effect and disappear): 9/20/07[/color ] [color=purple]PCP immediately ordered an x-ray and sent me as an emergency patient to the hospital calling ahead and describing me as having "a complete white-out of the left lung."[/color ] 9/20/07[/color ] [color=purple]Had two liters of bloody fluid removed in ER and was admitted to hospital with pleural effusion and pneumonia.[/color ] 9/20/07-9/24/07[/color ] [color=purple]Had x-rays and CT scans were negative for tumors. IV antibiotics resolved the pneumonia and no new fluid accumulated.[/color ][/size ] Note that to change colors you have to close one color and then open the next color, every time. You can't just close one color and expect it to revert back to what it was before. So in that regard it takes twice as much coding as bold or italics, which do revert back to normal type when [/i ] or [/b ] is used. But you can make it easy on yourself by doing this: (1) Go to your profile/signature entry window and copy all. (2) Open a regular message entry window, as if you were replying to a post, and paste in the profile code you just copied. (3) Use the code shortcut buttons at the top if they help, but especially use the Preview feature until everything looks right. (4) Copy the updated code, go back to your profile/signature entry window, paste the new code over the old, scroll down, and hit Submit. Aloha, Ned

Judy: As a "final touch" you could make the dates a different color, which serves almost like a blank line to improve readability: 9/20/07 PCP immediately ordered an x-ray and sent me as an emergency patient to the hospital calling ahead and describing me as having "a complete white-out of the left lung." 9/20/07 Had two liters of bloody fluid removed in ER and was admitted to hospital with pleural effusion and pneumonia. 9/20/07-9/24/07 Had x-rays and CT scans were negative for tumors. IV antibiotics resolved the pneumonia and no new fluid accumulated. You've probably seen Dr. West's many comments on PET scans and why he generally doesn't make diagnostic decisions based on them alone. Also, as you probably know, the CT part of a combination CT-PET machine is not equivalent in detail to a regular stand-alone (dedicated) CT machine. Maybe that will change in the future...? Aloha, Ned

Bill and Sue, welcome to the LCSC! My best wishes and Aloha, Ned

Maryea: A low dose (two 100mg capsules per day) of Neurontin was very helpful for my peripheral neuropathy, which was primarily in the feet and came on rather suddenly during the 6th Taxol cycle. The tingling diminished considerably within a few days, but it took several months before it went away completely. I see your mom had great results from her treatments. Wonderful! Aloha, Ned

Judy, you did it!! Wanna try for colors next? Aloha, Ned

Judy: It looks like you had the right idea, but -- uh -- you misspelled the first "size." That should fix it unless there's a stray code in there somewhere. Aloha, Ned

Hi, Eric, welcome to the group! You found the absolute best place on the Web for lung cancer support -- first-hand accounts by patients and family members about specific conditions and treatments, lots of helpful hints, and plenty of perspective. For more detailed medical information, we highly recommend onctalk.com, which is constantly updated by Dr. West of the Swedish Cancer Institute in Seattle. I just finished telling new member Renate about OncTalk, and you can read that here: http://lchelp.org/l_community/viewtopic ... highlight= Let us know what the oncologist says next Tuesday. Whoever goes with your mom should take notes or use a voice recorder or both. There will be lots of new terminology, and it's easy to miss something that could be significant. Best wishes and Aloha, Ned

Hi, Renate, welcome to the group! I too was 71 when diagnosed with lung cancer. That was 17 months ago and I'm doing okay -- you can read the exciting details in my profile below. When you get your biopsy you can let us know the specific cell type and what treatment options are presented. You're sure to find some here who have been through almost exactly the same thing and are ready to help you through this. Also, may I suggest that you 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. Best wishes and Aloha, Ned