recce101

Maybe no need, but congratulations anyway! I think you've got yourself one of those "indolent" cancers that Dr. West talks about. My onc started using that term about my adenocarcinoma a couple of months ago — but I hesitate to tell anybody since many people would hear "insolent" and have their suspicions confirmed. Ned

Wow, that's terrific — so happy for ALL of you!! Ned

Yes, that's excellent news. "From your eyes to your thighs you are cancer free" has a very nice ring to it! But I agree that it's time for a new onc. That sort of stress cannot be helpful. And be sure to let us know when you're about ready to go on Tarceva — we have plenty of tips to help you control the side effects. Aloha, Ned

I wish! See new entry for today in log. Ned

Hi, welcome to the group. Taxol/Carboplatin is a very common first-line treatment for NSCLC, and many of us here have had that combination. Practically everyone experiences hair loss and some degree of fatigue, but the other side effects vary considerably from one person to another. Some people develop peripheral neuropathy (numbness and tingling and shooting pains in the hands and feet) after being on Taxol for a while — it's a cumulative effect and may not reversible if it goes too far — and it needs to be reported to the oncologist immediately. I encountered neuropathy during my 6th cycle, but I had been advised to be on the lookout for it, and a quick call to my onc got me on medication which resolved the problem. Nausea and allergic reactions are relatively uncommon these days because of the "pre-meds" given by IV at the beginning of each chemo session. If you follow the second link in my profile/signature block below, you'll find a fairly detailed account of my experience with Taxol/Carbo. I seem to be a bit more susceptible to skin problems than most patients, so those parts of my writeup may not be relevant to your mom. Though my months on Taxol/Carbo were not a lot of fun, there was never a day when I was debilitated to the point of being unproductive, and I never had any side effects serious enough to interfere with my treatment schedule. Best wishes and Aloha to you and your mom, Ned

Hi, Gayle, welcome to the group! Another great resource is 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

Added some more updates to the log at the beginning of the thread. So far so good. Ned

My chemos are the same that Patti listed, except I had Tarceva before Alimta, and I'm just starting Alimta with unknown results so far and haven't had a need to try anything further such as Navalbine. But like Patti, I have adenocarcinoma, not squamous, and it DOES make a difference in at least two cases that I'm aware of. Many (most?) oncologists don't give Avastin to squamous patients because of safety concerns uncovered in clinical trials. And Alimta has recently been found relatively ineffective against squamous cancers. You can get the best answer by posting your question (with background information) in the forums section of 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. Ned

Hi, Kelly: One thing I'd be asking, mainly out of curiosity, is how the statement about the "small lung collapse" noted on the February x-ray fits in with the comments about the tumor on the two CT scans (cavitated in December, not cavitated and slightly larger in March). Depending on how clear the X-ray image is, it may or may not be providing useful information about what was happening to the tumor last month, and your oncologist's recommendations for treatment will probably be based on the latest CT scan (some tumor growth and a new small pleural effusion). But apparently the cancer is still confined to your right chest, which is very good news.The clear brain scan is also very good news. You asked about terminology. When I got my brain MRI some time ago, the written report didn't say "clear" or "good" but rather that my brain was "unremarkable." I happily showed my wife, who said she's known that for years! Best wishes and Aloha, Ned I can understand your concern about the

Hi, Patti. It's been a year since we last "spoke," and there's been a lot of stuff going on, but the good news is that we're both still here, and even better, there's apparently no evidence for either of us that the cancer has spread beyond the chest. Maybe we can keep it that way. But please don't wait another year to post an update! Aloha, Ned

Hi, Anya, welcome to the group. The first thing you should do, as others have said, is forget about this 3-month thing. Lung cancers are NOT all the same, and some respond very well to treatment. We have members here who were given this 3-month or 6-month line several years ago, and you'll probably be hearing from some of them. Not necessarily. The most common side effect is fatigue, and the others vary a lot depending on what specific drugs he is being given. If you can find out the names (they're often given in pairs) of the chemo he is receiving, we can be more helpful. Nausea is not nearly as common as it once was because of special "premed" medications given by IV just before each chemo session. I've been on one treatment or another for 30 months and there's never been a day when I was unable to get around and do something productive.Best wishes and plenty of Aloha, Ned

Small world! The last time I was in West was in 1995. My parents had moved to Waco, and afer my mother died I took my son and 2 daughters through West to show them my old stompin' grounds — it really hadn't changed much. I then convinced Dad to move to Hawaii, where he enjoyed 3 great years before having a quick decline and passing on in 1998. Even smaller world! That's the Kunia Tunnel, actually a huge 3-story building constructed in an excavated area then covered with pineapple fields during World War II. The original idea was to build airplanes there and pull them across the road to an auxiliary "gulch runway" at Wheeler Field to be flown out, but mainly it's been used (and still is) by all of the services for intelligence and communications security activities. I had a tour of the facility in the mid 1970s when it was also an alternate command center. The "big cross" in Kolekole Pass was built on Army property in the early 1960s but was removed in 1997 because of upkeep costs and lawsuits regarding separation of church and state. My wife used to write a local history column and has a photo of the cross being repaired by some Army engineers around 1990. We live just a few miles from there.I guess we should use the PM (private message) system for lengthy reminiscences, but really, who would NOT be interested in this stuff?! Ned

Hi, Dawn, welcome to the group! Although your cancer career got off to a rocky start with a bad diagnosis, you made up for lost time and your SCLC responded remarkably well to chemo. What chemo agents did you receive? I just read your response to Annie01. You have a very good grasp of the facts, and I'm wondering if that's from intensive research into your own situation or because of previous experience in the medical field. Also, what part of North Texas are you in? I spent most of my childhood in West, a little town on Interstate 35 just north of Waco, and I graduated from North Texas State College (now UNT) in Denton. After that I was an Air Force nomad for 21 years, then settled in Hawaii in 1972. We do have members in the Dallas area, and you'll probably hear from some of them soon, but I won't be able to join you unless I can figure out how to do a time warp. Best wishes and Aloha, Ned

Blessings and Aloha to you, Kerri. Ned

Hi, Kristi, welcome to the group! You've already received some excellent responses to your post, and they contain a lot of wisdom. For example: I can personally attest to that as I look back on the past 30 months (follow the second link in my profile below). From your message I gather that the purpose of your dad's radiation was to shrink the tumor which has been pressing against the superior vena cava and causing his swelling and breathing issues. This immediate problem needed to be addressed before considering surgery or starting chemo, which presumably is next on the agenda. When you get more information on that, such as the specific chemo drugs planned, please let us know. After a considerable amount of searching, I now spend most of my cancer-related online time at two sites: this one, which is truly a part of my extended family, and for the more technical medical issues, 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. I have no personal knowledge of CTCA, though of course I've seen their TV ads. Some have said that they pick and choose the cases they will accept to keep their "numbers" up, though I can't confirm that. But I can say with confidence that cancer treatment at least as competent and compassionate is available at many places, including the hospital and oncology clinic 25 minutes from my house and very possibly the place where your dad is receiving treatment. The more you know about your dad's condition and the accepted standards of care for his specific type of cancer, the better you can be assured that he is getting the best treatment available. You'll be surprised how fast you can get up to speed on these issues. Best wishes and Aloha, Ned

MANY CHEERS FOR STABLE ! Ned

Nope, we stay on Hawaii Standard Time the whole year. Ned

Thanks, Anne, and the best to you also! This morning I thought I was about to do a Patti B routine, with a blood clot in one leg on top of general swelling in both legs [see updated log at the beginning of the thread]. So after calling the clinic I was told to drive immediately to the imaging center of the hospital near their building for a Doppler ultrasound, then come to the clinic. The exam was quite thorough, and after about 40 minutes the technician said "We're finished, you can go to your clinic now, and we'll fax over the report." I asked if she found anything interesting, and she said, "I'm not a doctor, so I can't give you a diagnosis," then after a pause added, "but I will tell you that if I'd found anything, I wouldn't have let you leave!" Good enough. The printed report arrived at the clinic shortly after I did, and it was negative for clots/DVT. The extra swelling, warmth, and tenderness in the left calf is said to be cellulitis, so I'll be on oral antibiotics for the next 10 days. A rather tiring day, but I was impressed with how well everything was handled. Ned

That sounds ideal, Barbara. My arrangement in the garage was not especially comfortable, and I thought I was going to huli* over and crack my head on the concrete! * Huli — to curl over, as a wave breaking on the reef. Ned

Thanks, Patti, that's interesting. But I don't understand how a blood clot in the left leg could cause swelling in both legs. You know what, I'll bet you had two things going on — swelling in both legs from the chemo, plus a blood clot that made the left leg worse! Breaking news from the garage: Ned printing envelopes and listening to Meet the Press with both feet above the heart...and they said it couldn't be done!

Thanks for the suggestions/comments, and of course any others are welcome! The Anodyne Therapy does sound promising, and I will definitely check it out. There is a nearby care facility (aka nursing home) that has the equipment and provides outpatient services, so that might be an interesting adventure. From my initial Googling it appears Medicare stopped covering Anodyne Therapy in October 2006, but from my reading of their decision memorandum I think it was due to the lack of detailed clinical trial data rather than any indication that it wasn't helpful. I'll report back when I learn more. I remember Patti's experience with the blood clot, and I thought of that. I doubt that's my problem since both legs are affected almost equally, but I'll ask about it on my next onc visit. I know about the support hose, and I bought one pair a couple of years ago on the recomendation of my family physician. I forced myself to try them for a week but hated them for a variety of reasons and convinced myself that they weren't helping anyway, and they're in the back of my sock drawer. This is the only situation I can recall where I've been so bullheaded as to reject medical advice. I might relent at some point in the future, but for now I'll just find creative ways to elevate my legs and disregard the funny looks. Last night I watched a DVD movie lying on my back with both feet above my head, and the swelling did reduce during that period and even now at 9:30 a.m. it's still better than it was yesterday afternoon. I'll have to figure out a way to elevate the legs that high while running jobs on my laser printer! Ned

I've added a few more updates to the log at the beginning of the thread. Right now I'm sort of bummed out that the foot/ankle/calf swelling and stasis dermatitis which flared up toward the end of my Taxol/Carbo treatment is now flaring up again. This problem started before I ever got lung cancer, but some treatments seem to further reduce lower leg circulation and make the condition worse, and Alimta is apparently one of these. If anybody has any tips for dealing with something like this other than diuretics, skin care, and elevating the legs, I'm all ears! Aside from this problem I'm feeling really good, which makes it even more infuriating. Ned

Hi, Kelly, welcome to the group. After your mom meets with the oncologist you should have a better idea of the options. One consideration will be her general health and her ability to tolerate various treatments (some are easier on the body than others). If part of her resistance to treatment comes from stories she's heard from others about their bad experience with chemo a number of years ago, she should know that major advances have been made in recent years, and some side effects (especially nausea) are not nearly as common as they once were. Please give us an update when you can. Best wishes and Aloha, Ned

Hi, Annie, welcome to the group. I'm sure you're being more of a help to your mom than you realize. Let us know what treatment is planned when you get that info, and we can give you some first-hand tips to pass along. Aloha, Ned

Thank you, Betty. Knowing Carole, even only through the Internet, was an inspiration and a rare privilege that I will always treasure. Aloha, Ned