recce101

Hi, Heather, and welcome to the group. The fact that you've tolerated chemo well is a very good sign. And from your writing I can tell you're a fighter, another big plus on your side. Radiation is something I haven't had to do as yet, but I know it can be rough, especially in combination with chemo. Keep us updated on your progress. Best wishes and Aloha, Ned

Mary Colleen: I don't have any personal experience with post-treatment follow-up (yet) but ran across a set of evaluation, treatment, and follow-up ("surveillance") guidelines for NSCLC on the M.D. Anderson website: http://utm-ext01a.mdacc.tmc.edu/mda/cm/ ... L/SideBar1 (choose Thoracic, then Non-Small Cell Lung Cancer, then NSCLC...pdf) For post-treatment surveillance of a Stage II patient, page 6 of the M.D. Anderson guidelines recommends: (1) Physical exam and chest X-ray every 6 months for 5 years, and (2) CT chest every year. I don't know how well this tracks with typical practice across the country or with Medicare payment criteria, but at least it gives you the opinion of one major cancer center. Aloha, Ned

Hi, Flo, and welcome to you and Terry! After you meet with the oncologist, please give us Terry's plan of treatment. You can be certain there are others here who are on (or have been on) the same combination of chemo drugs, and they can help you both through the rough spots. The simplest way to share this sort of information is with a chronological profile of treatments, side effects, test results, etc. like you see at the bottom of most of our messages. Click the "My Profile" link at the top of the screen, scroll down to the "Signature" block, enter your data and periodic updates, ensure that "Always attach my signature" is marked "Yes," add a photo in the "Avatar" section if you like, then "Submit." All of your messages that have a profile attached will automatically update. It also relieves you of the need to give background information every time you post -- just plunge into the subject at hand. Best wishes and Aloha, Ned

Raney: I get sensitive, irritated skin with carbo/taxol/avastin, but the only place it progresses to an itchy rash is on the sides and soles of the feet. This starts about the 6th day after each infusion and goes away by itself after a few days. My onc says it's not classic hand-foot syndrome, but there are some similarities, so during my most recent cycle (number 4) I tried a remedy for hand-foot syndrome I found on a Canadian website: http://www.cancercare.on.ca/pdfmedicati ... ndrome.pdf The part that intrigued me was the suggestion to soak the feet (hands too, if affected) in cold water several times a day the first week following infusion, BEFORE the symptoms actually begin. Then if the rash comes on anyway, do more of the same. This really helped -- the rash was minor compared to previous cycles and lasted only 2 or 3 days. Applying this technique to a whole-body rash wouldn't be very practical this time of year (even in Hawaii!!) but you might try cold towels or a wrapped ice bag on the most bothersome areas. I hope you can get this under control quickly. The foot rash has been my most bothersome side effect so far, since each cycle it has started about the time I was beginning to feel better otherwise, and hampered the walking I was wanting to do. A whole-body rash? Ouch!! Aloha, Ned

Great story! Fixable problems are definitely the best kind. Maybe it's time to get rid of that first bend... Aloha, Ned

Hi, Karla! Welcome to you and your husband. Great attitude, aggressive treatment, good overall health (otherwise he probably wouldn't be working full time) -- you guys have plusses all over the place and are going to be another one of our success stories, I'll betcha! Thanks for the profile, which came in as I was starting to write this. It will help you, not just the rest of the group, since you won't need to give background every time you post a new message. Also, you can update the profile any time there's new information, even if you don't feel the need to post a new message, and the update will appear with all your existing messages that have a profile attached. Best wishes and Aloha, Ned

Show me someone who is offended by gallows humor, and I'll show you someone who hasn't faced and survived real hardship. Aloha, Ned

From what I've read here the past few days, many in the LCSC feel exactly as you do. Our blood boils when we see those happy, carefree, shallow faces or those clueless masses "giving themselves ulcers over ribbons and bows and candy." But then I wonder, how many of the currently clueless will themselves be getting a crash course in priorities this coming year? How many will find themselves posting in the INTRODUCE YOURSELF forum? Their sudden misfortune will give none of us any comfort. Instead, they will be welcomed warmly just as the formerly clueless among us were welcomed not long ago. Aloha, Ned

Sharyn: Wonderful news, great, fantastic!! I'm sharing your joy way out here across the Pacific!! Aloha, Ned

Or, to say it another way, "Life is inherently fatal." I don't believe cancer has caused me to feel any more mortal than before, but it has changed what I'm doing and plan to do with whatever time I have left. Also, I think age has an effect on how one views mortality, especially when faced with imminent danger -- at least it has for me. If I'd met my end over North Vietnam, assuming I was able to realize what was happening, I'd probably have felt very cheated. I was only 29, my kids weren't yet in school, and I'd barely started on this journey called life. If it had been cancer instead of 37mm artillery, I believe I would have felt the same way. As it was, I somehow emerged unscathed, and I resolved to never again let the "small stuff" bother me. I've seen the same comment from young cancer survivors. Now, at age 71, it's a different ballgame. I've had many opportunities over the years, have succeeded in some, have passed others by, and have totally messed up a few. If my positive expectations prove to be unfounded and I succomb to cancer next year or the year after, I will not feel particularly cheated. My main regret will be that I won't be around to help my wife in the coming years or to see what my children and granddaughter do with the next phase of their lives. In the meantime, this battle with cancer has caused a change in my outlook that I would not have anticipated. If my positive expectations hold true, I'll do everything in my power to make it a permanent change. Let me explain: During my second chemo session my son surprised me at the clinic with a portable DVD player and the complete first season episodes of "My Name is Earl," a riotously funny redneck/trailerpark-mentality comedy with a message. After a near-fatal accident, Earl has made a list of all the bad things he's done to others throughout his life and has set out to make amends with every one. As Earl says, he's "jus' tryin' to be a better person." This series, in addition to being a great way to spend a chemo session, has had a real impact on me. I'd never be able to right every wrong I've done in my life, but being a "better person" -- that I can do. Aloha, Ned

Missy, your post really grabbed me deep inside. Most of my life I haven't been a very emotional person, and empathy has not been my strong suit, but recently I've been making up for lost time. This is not about my own medical condition -- though hopeful, I'm also realistic and ready to accept whatever may come my way without getting anywhere close to self-pity. But it's about the effect on my family and especially my wife, who has been end-of-life caregiver to her father and my father and now to her still minimally ambulant mother who lives with us. I see how she's set aside, perhaps forever, her own dreams and aspirations to care for others and the incredible stress the holiday season brings upon her -- this year, and for at least the past ten. I see those happy, carefree, shallow faces and in my own "looking for the bright side" way try to convince myself that what she is going through has some meaningful benefit to her and not just to those fortunate enough to come under her care. Regardless of one's religious or philosophical views, there must be that bright side. There must be... Aloha to all, whatever the season. Ned

Hi, Heather -- I'm really glad you found us! What chemo combination and schedule is your husband on? A good way to share this sort of information is with a chronological profile of treatments, side effects, test results, etc. like you see at the bottom of most of our messages. Click the "My Profile" link at the top of the screen, scroll down to the "Signature" block, enter your data and periodic updates, make sure that "Always attach my signature" is marked "Yes," add a photo in the "Avatar" section if you like, then "Submit." All of your messages that have a profile attached will automatically update. It also relieves you of the need to give background information every time you post -- just plunge into the subject at hand. It's great that you both have a positive attitude and good family support. That's a BIG plus in this battle! Best wishes and Aloha, Ned

Debra: Even the best docs (or someone in their office) can let things fall through the cracks at times. We all have to be proactive, which I'm sure you are. When I have an onc appointment, I generally call the day before to confirm the time and remind the staff that I had such-and-such a scan on whatever date and that the doc will be wanting to go over the results with me when I come in. Even then, sometimes they have to call imaging to transmit the pictures or report while I sit on the table wasting several people's time. So far I've been able to keep my cool, and I try to cut the office some administrative slack as long as they're medically competent and obviously trying to do a good job. Of course in the back of my mind I "know" I could do a better job as office manager! Best wishes and Aloha, Ned

Sawyer: You and your mom have a great attitude, which is a BIG part of the battle! I see from your last post that you've created a profile. As you travel down this bumpy road, it's a good idea to keep the profile updated even if you're not writing a new message -- any existing message with your profile attached will be automatically updated with the new information. That helps those of us who, in addition to looking at new posts since our last log-in, keep lists of members we're especially interested in tracking. You folks are on your way to becoming another of our many success stories. Best wishes and Aloha, Ned

Robin: There's a bright side to this! First, you have a firm diagnosis early in the game, not like some others in the group who are still trying to figure out what's wrong and bouncing from one test to another. Future tests for you will be focused, not shots in the dark. Second, as Randy said, you have a very common form of lung cancer, which means there's been much research on it, effective treatments have been developed, and there are LOTS of survivors (many right here in the LCSC) who can help you meet this challenge. Read Ernie's post again -- it has some excellent advice. Communicate with others who have "been there, done that, bought the shirt...." Do an LCSC search on adenocarcinoma and right-click the message subjects so you can read the profiles, not just the words at the top. Send a few PMs. When friends, acquaintances, and relatives who HAVEN'T "been there, done that" come over to offer their support or sympathy, talk freely about your condition and spend some time educating them on lung cancer and the remarkable advances in treatment that have recently become available. You'll find that surprisingly therapeutic! And -- as soon as you possibly can -- start writing messages of encouragement to members even newer than yourself who are confused and overwhelmed and frightened. That, as much as anything you can do, will put you on the path to beating this disease! Best wishes and Aloha, Ned

Liz -- that's great news about your cousin! Gives us all cause to celebrate. And best wishes to yourself on your new chemo combo. I never had Taxotere, but have read that its side-effects are somewhat rougher than Taxol for many. Add radiation to that and it's no wonder you were having a tough time. I hope you have an easier time with the Carboplatin/Taxol program. Will that include Avastin as well? Aloha, Ned

Tracy: That's absolutely fantastic! I have a special reason for being happy -- your current program mirrors mine, and the CT scan after my third cycle showed improvement. Looking forward to joining you on the Avastin-only scene, maybe in late January. Let us know what side-effects remain once the Carboplatin and Taxol are out of the picture. And happy birthday, youngster! With much Aloha, Ned

I'd never thought about it that way, but Geri's comment strikes me as very wise and true! Val, you're doing the right thing in welcoming her into the family. And a different, cute nickname for her (rather than Grandma) is definitely the way to go. She'd probably enjoy helping to choose one, and maybe has a name in mind already. Aloha, Ned

ALL RIIIIGHT!! That's my kind of food! Next trip to the grocery store I'll pick up the "ingrediments." Many thanks, and keep 'em coming! Aloha.

When I got my port I was led to believe, or at least allowed to believe, that it was useable for things other than chemo infusions -- regular blood draws, CT scan contrast dye, etc. So far it has been used only for chemo. Altlhough my veins are still minimally "okay," I'm looking toward the day when they may not be, and have started asking this question of the techs who are praparing me for contrast scans or other procedures requiring IV. The most common answer is lack of training, which would seem easiliy remedied, and one told me that the major hospital downtown did have people in its imaging department trained to use ports. But the tech at my last CT scan had a different explanation -- he said the type of dye I was getting for my chest scan was injected under pressure which was beyond the limits the port was designed to handle. Can anyone confirm the validity of this explanation? Aloha, Ned

Aliboo: I'm all too familiar with the vertigo and nausea -- usually occurring without warning and in the most inconvenient places -- associated with Meniere's Disease and other vestibular conditions such as your apparent variety, Autoimmune Inner Ear Disease. Fortunately my hearing loss is limited to one ear and, after 12 years dealing with Meniere's, my vertigo and nausea are pretty much under control. My best friend, always in my pocket, is meclizine (aka Antivert), which I take 3 times a day "whether I need it or not." Many people can't take meclizine because of the extreme drowsiness it causes them, but I'm not affected in that way. You certainly have my sympathy. Being a caregiver is hard enough without having the "unreliability" factor thrown into the mix -- not knowing if you'll be able to drive, walk, or even stand 5 minutes from now or for your boyfriend's appointment 2 weeks from tomorrow. And the vast majority of people, including family, simply don't understand. They see you on your good days, when you're out and about and looking the picture of health -- never on your bad days, when you're curled up in a corner somewhere wondering when and if this episode will ever end. Send me a PM if you think I can help in any way. My very best wishes and Aloha.

Back in September when I was recovering from my thoracotomy and looking for help at 3:00 a.m. on a sleepless Sunday morning, I typed "lung cancer support" in my Google window and found your link on the first page. One click later I knew I'd found gold and there was no need to go to page 2. "Awesome" may be an overused word, but it certainly fits here. Mahalo and Aloha, Katie and Rick!!

And remember the doctors, nurses, and staff are ultimately working for you, not the other way around. Without patients they couldn't be in business, even as a nonprofit entity. Don't let the initials, titles, and layers of authority intimidate you. If you're not satisfied after today's meeting -- or even if you are satisfied to a degree but still skeptical -- ask to see the chief of staff or equivalent. You can be polite, calm, soft-spoken, and very convincing at the same time! My very best wishes and Aloha.

Stephanie: I missed some of your previous posts, but I did a search on your username and have now read them all. The first thing that impresses me is how much your attitude and approach have changed over the past three weeks. Some of that has inevitably transferred to your dad, and it seems he was a rather positive fellow to begin with, so that's a big plus for him. It's been demonstrated that expectations of success not only provide a psychological boost, but actually cause the brain to release specific chemicals which promote healing and health. Another thing I noticed is that in the midst of your own troubles and fears you saw another new member in need and reached out to her with words of encouragement. That's fairly common, and very beneficial, for new members who themselves have cancer, but I haven't seen it much from caregivers until later in the game. That tells me that your dad has quite a daughter, another big plus for him. Also, he's still young (yes, 53 is young and he's strong and he's active, more plusses. Add to that his medical team, which from your posts appears to be doing a fine job. Your dad's comment about not wanting treatment if he's Stage IV was probably based on knowledge he picked up several years ago, when NSCLC Stage IV was practically an automatic death sentence and medical science didn't have a good handle on the side effects of chemotherapy. Since you haven't mentioned it recently and he's now started his treatments, I figure you were able to educate him out of that now obsolete notion. As you can see from my profile, I had my fourth chemo session the same day your dad had his first. I'll be watching your posts and expect to see a great success story from the two of you. Best wishes and Aloha.

Hey, Debra, way to go! So far, your reaction to that particular chemo combination sounds remarkably like mine. It will be interesting to see if you get the same sort of skin irritation, especially on the sides and soles of the feet. As I mentioned earlier, that's been my most troublesome symptom to date, and really restricts my activity during that second week when I'm starting to feel good again otherwise. My onc says it's not classic hand-foot syndrome, which is common with some other chemo drugs, but some of the characteristics are similar. It didn't occur until the second cycle, but then the third cycle was an almost identical repeat of the second. Started the 5th or 6th day after infusion, then cleared up rapidly about the 14th day. I tried a variety of remedies -- cold soaks and Bag Balm seemed to help the most, but nothing made it go away except the passage of time. Like what's been said about the common cold: it lasts 14 days with treatment, 2 weeks without. While Googling last night I found a Canadian site with some tips on hand-foot syndrome that are a bit different from what I've seen before. It lists some measures to take the first week after infusion, before the skin irritation actually gets started, which should reduce and perhaps even eliminate the symptoms for that cycle. Even if my problem isn't true hand-foot syndrome, these steps make sense to me and I'm going to try them next cycle. Here's the link: www.cancercare.on.ca/pdfmedicationinfo/ ... ndrome.pdf Aloha.