recce101

Thanks for the update, Michelle. I hope you can both get some well-deserved rest and that the edema starts to resolve soon. Ned

Hi, Annette, welcome to the group. Congratulations on a successful VATS. As you prepare to hear what recommendations your oncologist may have on July 7, 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. Although the oncologists who participate at GRACE can't make specific suggestions to someone who is not their patient, they have a knack for laying out the vaious options in a way that will help you arrive at a sound decision. It's like getting a second opinion in advance, and it's free! If you know the specific type of cancer that was found in your right lung (small cell or one of the non-small cell types such as adenocarcinoma or squamous), be sure to include that in your question as well as any other details you may have. Best wishes and Aloha, Ned

Today is the final event in the passing of my mother-in-law. We've chartered a catamaran for a 7:30 a.m. departure from Haleiwa Harbor (on Oahu's north shore) to scatter her ashes near the spot where we previously scattered those of my wife's father, uncle, and aunt. After that we'll treat the group of about 20 cousins and spouses to breakfast at a local restaurant. I've told my wife and kids that when it's my turn they won't be needing a boat — a nice windy mountain pass will do just fine (I was Air Force, remember?). Ned

I'd just like to add a bit of reinforcement to what Patti and Barbara said. It's my firm opinion that for someone with cancer, especially someone undergoing chemo, there's no such thing as overreacting to complications that develop. During my first year, there were a couple of times when I debated with myself whether it was worth calling the clinic for a "little" problem, something I'd have felt silly reporting to a doctor under normal circumstances. But each time I did, I was surprised that everyone at the clinic, from the oncologist down to the person answering the phone, took the problem very seriously. By now I've learned to trust my instincts, and I've never been given reason to think there was any overreaction on my part. Ned

Michelle: I agree with Patti. If the swelling is getting worse, since it's the weekend, take him to the ER to get checked for a blood clot. These are not to be taken lightly! It's unconscionable for you to be left hanging like this, with no guidance on who to contact when something critical comes up in between oncologist visits. I don't know how your particular clinic is set up, but there must be someone knowledgable you can contact when your onc is not available — an experienced nurse, or nurse practitioner, or physician assistant, at a minimum. My own onc is hard to track down, but there is a very smart oncology nurse practitioner at my clinic who knows my case, answers or returns calls promptly, and can quickly coordinate with my onc or one of his associates if necessary. There's also Dr. West, who has answered your other questions within a few hours. Never hesitate to be the squeaky wheel! Best wishes and Aloha, Ned

Judy: If you scroll to the top of this thread you'll see your first message, posted 6/26 at 6:34 am Hawaii time. When you didn't get any response you posted a second message 29 minutes later. That second message moved the thread back to the top of the JUST FOR FUN forum and also made a fresh entry for anyone using the "View posts since last visit" feature, so that second message would be considered a "Bump" or "TTT" or whatever-you-want-to-call-it post. Basically, any time you post a message for the sole purpose of bringing the thread back to the top so it has a better chance of being noticed, it's a bump message. Since you don't have anything better to say, you can type "Bump" or "TTT" or whatever in the message window, but in reality you can type anything you want — anything that's wholesome and legal, that is... Ned

Is TTT "to the top" or something more subtle? Ned

My fatigue on Carbo/Alimta seems to be cumulative. I'm now in the 3rd week of the cycle and still taking naps, whereas when I first started Alimta the major fatigue lasted "only" 7-10 days. But aside from that and the expected constipation (now handled with reasonably effective countermeasures) and some edema, there are no other side effects. No skin problems, muscle aches, drainage, SOB, lightheaded feeling, neuropathy, vision problems, etc. that were getting real old real fast on some of the other treatments. I'm sure the fatigue would get to me also if there was a lot of stuff I really had to do, but so far I've been able to adjust my schedule to accommodate it. Ned

The one I have is an Airlife Volumetric Incentive Spirometer, which is available many places on the Web for about $10. There may be a medical supply company near you that stocks them. The measurement is made by breathing IN through the device. It was fun to track my improvement as my pleural effusion gradually diminished. I improved from about 1000ml in the hospital to 1750 over a period of several months. Then when I went on Tarceva I got up to 2000 for a while. Now I'm back down to 1750, and my strength/endurance seem to correlate quite well with the numbers. Ned

Hi, Michelle. Chemo can cause all sorts of weird stuff, and some of it may not be documented in the official literature. Put "twitch" and "chemo" in a Google search window and you'll find a number of interesting questions/observations. Fluctuating potassium levels can cause muscle spasms (cramps, twitches, etc.), and my oncologist and my family physician both monitor those levels closely. Low potassium can be caused by chemo, diuretics, etc. Talking to oneself? Heck, I think that's perfectly normal. Sometimes I agree with myself, sometimes I don't. As they say, two heads are better than one! I'm not saying you shouldn't be concerned about brain mets, but common symptoms of a brain met would be something more like increasing headaches, confusion, blurred vision, or dizziness — and these can be caused just by the chemo too! I think it's best to not be overly concerned about brain mets, because they can be treated more effectively than many other byproducts of lung cancer. At least that's what I tell myself (see, I did it again!). I saw your question posted on GRACE, and I think you'll get a response from one of the oncologists soon. Aloha, Ned

Good show, great attitude, well done! Ned

Terrific news, Michelle! Did you bring home one of those plastic breathing devices (spirometer) from the hospital? As the numbers on that increase you should also see improvement in your husband's strength and endurance. Aloha, Ned

Good show, Bruce! Ned

Home Depot is too far from my house. Next time you have an encounter, could you ask them to expand the service to all of the neighborhood Wal-Marts? I'd be eternally grateful. Ned

Targeted agents such as Avastin and Tarceva are intended to do that, but in real life they don't quite live up to their marketing hype, and some collateral damage inevitably occurs. These side effects are relatively mild for most patients (myself included), but not for all. The cancergrace.org site which I mentioned earlier has a lot of reliable (and understandable) information which will answer your questions better than I can, especially since 10pm pumpkin time has arrived in Hawaii. Aloha, Ned

Hi, Michelle, welcome to the group. I see you've already heard from Sandra and Judy, two of my favorite members. I was diagnosed with adenocarcinoma (the most common type of non-small cell lung cancer) in late summer 2006 and staged as IIIb (malignant pleural effusion). As you can see from my profile below and the more detailed history in the link, I've been on a variety of treatments since that time, and I'm reasonably active and productive though my strength and endurance are limited. Except for a small remaining area of "loculated" fluid, my pleural effusion resolved during the initial months of treatment, and my lung function greatly improved as a result. The fluid has not returned. From reading your post, I gather your husband was somewhat further along in the process than I was at diagnosis. It's not clear to me whether has has improved after being on treatment or has continued to decline. How long has he been on chemo, and has he had any CT scans since starting? 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. Best wishes and Aloha, Ned

Congratulations on getting your life back and all the good things that come with that remarkable achievement!! Ned

Wow — that's great, Dave! Aloha, Ned

That brought a tear to my eye. Thanks! Ned

Yep, I know what you mean. But congratulations anyway! Aloha, Ned

I assume you mean Percoset? The only time I've been actively nauseous (thrown up) since receiving my cancer diagnosis was while I was on Percoset after my 2006 exploratory surgery. The nausea disappeared as soon as I switched to another pain medication. So the pain meds would be the first place I'd look for a solution. Best wishes and Aloha, Ned

That's amazing, remarkable, pick the word! It would be good to have more details — extent of the cancer at diagnosis, the chemo used, etc. Aloha, Ned

Actually, they're not necessarily all that stupid. For us older folk (not you, Judy, you're still young) who don't have the fast-paced office routine any longer, and no need to constantly juggle requirements and keep info floating in short-term memory, they can provide a good means to keep those brain connections active and develop new neural pathways. Admittedly, the story lines can be rather violent and anti-social, but there are other sites that can help condition the brain without venturing into the dark side of existence. One of my favorites is lumosity.com which runs a little over $6 a month if you do an annual subscription. Ned

Nice story, Barb. But there's a good chance Pam Deakins is an assumed name. Some kind souls really get a kick out of performing anonymous good deeds. You've probably seen similar bumper stickers in your community — one with a Hawaii touch is "WARNING: THIS DRIVER COMMITS RANDOM ACTS OF ALOHA." Ned

Hi, Jompy, welcome to the group. You may not be getting any messages from our US mainland members until morning, but I'm in Hawaii where it's a few hours earlier and wanted to reply even though I don't have any clearcut answers. As you've seen, there's a great deal of variability in how a person responds to treatment, or withholding of treatment, or various pain medications. Any guess a doctor may give as to how long a patient has remaining is merely that, a guess. You're right about the steroid probably being responsible for his increased appetite, and from what I've seen it's not uncommon for a "terminal" patient to seem to rally for a while after some of the stronger medications have been removed. Please don't beat yourself up or try to second-guess the decision to stop chemo. From your description, that was the wise course of action — for patients who have stopped responding to chemo, at some point more chemo will do more harm than good, and very likely that point had been reached with your friend. Also, I think the fact that he seems relatively comfortable without the strong pain meds should be viewed as a blessing rather than as reason to doubt whether the meds were needed previously. You mentioned seizures, and I think it's possible that his body has undergone recent changes (perhaps some loss of nerve sensitivity) which cause him to feel pain less than would otherwise be expected. I don't have any medical basis for this statement, but that's what seemed to be happening to my father in his last weeks. Yes, it's an awful job, but you're doing the best that you can, and the main thing is to keep your friend comfortable and not try to revisit every fork in the road up to now. Best wishes and Aloha, Ned