recce101

Jen, I can understand your concern, and I'd be concerned too if it happened to me, which it very well might some day. But from my reading I know that coughing up blood can have many causes, such as an infection or just the act of coughing itself. Hoping for reassuring news from Mayo. Aloha, Ned

Yes, and that's only the start of it! Ned

Michelle: It's a good idea to record the session with the oncologist. Tell him the terminology is still new to you and you want something reliable to refer back to later. He should understand — so far I've never heard of a doctor objecting. Or if you have one of those small digital recorders, heck, just turn it on and stick it in your purse. Ask for copies of all the various reports: pathologists' reports of tissue samples, radiologists' reports of previous scans, etc. When you go for a new scan, ask the imaging tech for a CD of the session (should be ready a few minutes after the scan is complete). If it's the same imaging center where he got an earlier scan, ask for a CD of that one too. You may not be interested in viewing the images yourself (though I do), but they will be available in the future in case you take your husband somewhere for a second opinion. As you mentioned, getting scheduled for the next scan will be one of your goals. But even now, the doc, by tapping and listening, should be able to determine whether the pleural effusion is continuing to reduce. Ned

Michelle, this is beyond awesome! I went back to the top of the thread and read the whole thing from the beginning, and I'm not ashamed to say that it brought tears of joy to my eyes. What a great "HOW TO" lesson — it should be required reading! Randy, I see you're one of the moderators of this forum. How about making it a Sticky? Ned

Ann — Glad you got to see the shuttle launch yesterday. With all the delays, I know it was a relief for the NASA guys to get it off the ground. I haven't seen the shuttle, but I did get to watch Apollo 15 launch in July 1971. What impressed me more than the sight was the feel of the sound/pressure waves beating against my chest even at a distance of several miles. Judy — Hope you're feeling better soon. I had become convinced that each of my Carbo/Alimta cycles was going to be a little more fatiguing than the last, but I was wrong. This last one has been a breeze, and I've been feeling great for over a week with still another 5 days to go before my next infusion. Go figure! Ned

Hi, Tova. Really sorry to hear about your mom's brain mets, but as you say, they're a rather common consequence of lung cancer. I haven't had any yet, but I know there's something like a 50-50 chance I'll have one or more eventually, and if that happens I'll try to keep in mind what I frequently tell others — that brain mets can be very effectively treated and that the side effects, while not a lot of fun, can be handled. Please keep us posted. Aloha, Ned

That's as good as they get! Ned

The dog barked and the goose

Hi, Lisa, welcome to the group. I won't kid you, this is a tough one. Being "Stage IV" is not the biggest part of the problem (we have many people here who have been Stage IV for years and are doing well), and neither is the "terminal" or "incurable" part (we're all terminal in one sense of the word, and most of us are living with a number of incurable conditions). Rather, the greatest obstacle is your dad's general physical condition. Although his cancer may be very treatable, all of the available treatments come at a cost in side effects, and a patient needs some reserves of strength in order to tolerate the treatments. If he can develop those reserves, there's a realistic chance for the treatments to do more good than harm. Don't get locked in on the 9-12 months thing. That's just a general average/mean for a very large group of people with a similar diagnosis, and there's a great deal of variation from one individual to another. I also agree that it would be worth your time to visit cancergrace.org. You can browse the articles and forum messages, and ask whatever questions you may have with the expectation of getting an authoritative, helpful response within 24 hours. Best wishes and Aloha, Ned

Hi, Maddie, welcome to the group. If you haven't already, may I suggest that you visit 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. Aloha, Ned

Will said: I haven't heard it put that way before, but I think that's very true. Ned

You know, this reminds me of the plot of Matt Damon's movie "The Rainmaker" — seriously! Damon plays the role of a young law school graduate who, as his first big case, takes on an established health insurance company whose modus operandi is ripping off their clients. With the help of a gutsy associate (Danny DeVito) and a sympathetic judge, he ripped that company a new one! I picked up the DVD in the $5 bin of our local Walmart, and have watched it 3 times. Go get em, Michelle! This is ridiculous. Ned

I checked some of the online definitions for "shorness of breath" and "dyspnea" but didn't find much help there. Some seem to include just about any breathing difficulty within the meaning of SOB, while others make a distinction between an unsatisfied hunger for air (my definition of SOB) and other problems such as the band around the chest (which I would call a restriction to breathing, or labored breathing, not SOB). I guess it's just semantics, but it would probably be useful for patients to describe the various sensations to the doc instead of simply answering yes or no to the SOB question, because we don't know what definition the doc has in mind. And it probably makes a difference, or else he wouldn't have asked the question. Ned

On Alimta I do have some weakness and reduced stamina that's more apparent than when I was on Tarceva. I wouldn't call it shortness of breath, because I can still get a good amount of air into my lungs, but I have to work a little harder at it and the huffing-puffing is more noticeable during exertion (like walking up a hill). To me, shortness of breath is like when I was first diagnosed and had the large pleural effusion — I would breathe as deeply as I could, but still felt the need to get more air. That specific feeling has never returned. I now feel I can get enough air, but there seems to be a stiffness or restriction in the chest wall that I have to push through to get the lungs fully expanded. Does that make sense? Ned

About asking for a prognosis, I agree with Patti at least 200 percent. Don't! There's no way you can get useful information out of that question, even though some doctors will try to provide an answer (i.e., make a guess). Statistics are based on the average/mean of a very large group of patients with a similar diagnosis, and there is a huge amount of variability from one patient to another. They may be useful to bureaucrats and insurance executives in deciding which treatments to cover, but they're meaningless to any individual patient or caregiver. If you want to read the opinion of a leading lung cancer oncologist, look here (he posted it just yesterday): http://cancergrace.org/forums/index.php ... 9#msg10449 Now that you've had an introduction to cancergrace.org (GRACE — Global Resource for Advancing Cancer Education), I hope you'll make it a regular stop during your Internet travels. Aloha, Ned

Larry's Wife said: I poked around Google for a few minutes using a search for "california health insurance complaints" and found several state government agencies that should be able to help, depending on the specific type of insurance or HMO. Here's one: Department of Managed Health Care, Help Center, 1-888-466-2219, http://www.hmohelp.ca.gov/ If that's not the correct agency, they should at least be able to refer you to the correct one. Please let us know what you find out. Aloha, Ned

Sounds mighty good to me! Aloha, Ned

Michelle, please check this item at GRACE. It puts a whole new perspective on denial: http://cancergrace.org/coping-with-canc ... mechanism/ Thanks for the clarification on the insurance question. I put "medicare primary secondary" (without the quote marks) in a Google window and got quite a refresher course. In my case Medicare is primary and the remaining 20% is picked up by Tricare for Life since I'm a military retiree — a pretty good deal in anyone's book. I'm betting you get to watch and hear some birds this weekend. Aloha, Ned

We certainly need more good news stories like this. Congratulations! Ned

Michelle, that can be arranged. I'm sure any of the members you've been corresponding with so far would be happy to talk with you. Click the "pm" (private message) button under one of their posts and ask. Has your husband expressed any thoughts in this area? For some people, age can have a bearing on how much discomfort they are willing to put up with for the chance of a modest increase in longevity. I don't recall seeing your husband's age, but since you mentioned insurance issues, I gather he's not yet 65 (Medicare age). Maybe he's not ready to quit either. Also, I'm not sure how much of his difficulty is the result of chemo side effects — it's possible he might feel better as the pleural effusion resolves. If you can find a way to begin such a conversation, I think you'll both find it very positive. Aloha, Ned

This news is very hard to take. Tracy has a permanent spot on my list of heroes. Condolences to you, Fred, and Tracy's family. My fondest Aloha, Ned

Heading down the hill in an hour for my 3-week treatment. Beautiful day. I don't look anything like I did 20 years ago. Not that much worse, really, but very different. Fuller face and thinner hair, for the most part. Aloha, Ned

Welcome to the group! Let us know how the appointment goes and what questions remain after you see the oncologist. Best wishes and Aloha, Ned