BarbaraL

Not sure where Media, PA is located, but if you're close enough to NJ please call Drs. Robert Caccavale and Jean-Philippe Bocage. They are in Somerset, NJ and operate in St. Peter's in New Brunswick. They also have admitting privileges at Robert Wood Johnson. 732-846-3819. Website: thoracicgroup.com. These guys were one of the first to do VATS (video-assisted thoracic surgery) and continue to teach the procedure to other surgeons. Three weeks after my diagnosis which included massive pleural effusion, they did my bronchoscopy, pleurectomy and pleuridesis (talc poudrage), and I couldn't be happier with them one-on-one (bedside manner) OR with their expertise and ability and results. Back then, a mere 10 months ago (Ha!--that was a lifetime!), I wasn't very knowledgeable, but had been referred to a very highly regarded oncology group, and my doc there sent me to them at our first meeting. After the surgery, everywhere I went--from port-insertion surgeon and nurses, to radiology places, to second and third opinions--the personnel volunteered that I had the *best of the best* do my surgery. I've since heard dire statistics like only 40% of these procedures are successful, blah, blah, blah, which I didn't know at the time. All I know is that it was 100% successful for me! Good luck and congratulations on being a surgical candidate! Barb

Saw both the pulmo and the onc today. Lots of fun. Actually, I like and respect both of them very much, so I shouldn't complain. Both say my pneumonia is still there, but past the acute stage. (I could have told them that.) Finally asked about whether I could fly in case I want to take a trip, and was told I'd need oxygen and the procedures were explained. Okay. Pulmo okayed my plan to *add* a reduced dose of Welbutrin to my Celexa (anti-depressant) regimen, so I might smoke as little as possible. The last time I switched to Welbutrin alone, I got severely depressed, which pulmo agreed was not acceptable, either, compared to smoking. We've now agreed that the less I smoke the better, but she's not going to beat me up about it either. At least I have a doc who understands how debilitating depression can be. Onc says latest CT scans show some progression in a hilar lymph node and the primary tumor in the right lung, but stability in other locations. I'm starting Gemzar and CPT-11 (Irinotecan) next week, and I'll let you all know how it goes. I haven't heard or read much about using these two compounds as a doublet, yet what I did see seemed pretty cutting-edge. I see my onc like that--very aggressive and on top of the research--so I'm comfortable with that. I'm not happy with having Neupogen (sp?) shots every day for 5 days after, and am leaning toward learning to do it myself (or have my hubby do it). I'm doing everything in my power to lead as normal a life as possible, and spending *any* time nearly every day in the doc's office doesn't qualify. Onc wasn't particularly forthcoming about what my increased pain is about, either, but we all suspect it's mostly about the pneumonia, since the LC progression doesn't seem sufficient to cause it. Now it's onto medium-dose Oxycontin at 12-hour intervals, with oxycodone for breakthrough pain. I'm extremely thankful to have an onc that takes pain management seriously, but I'm disappointed to need it now. I've felt and looked so well (according to friends and family). Just the need for it feels like a bad blow. All I can to say to everyone is HOPE FOR A CURE. Live each day like it's your last, and enjoy every moment you have. It's a gift. Love and prayers and warmest wishes to all, Barbara

Dearest Bob, Hang on, like you are in your picture ! G*d knows I know how hard the waiting is. If you're not satisfied with your docs in short order, let me recommend the Cancer Institute of New Jersey in New Brunswick. When I called for a second opinion, and faxed over a couple of reports, I had an appointment within the week. It's the only NIH recognized Comprehensive Cancer Center in the state (aside from the NJ branches of Sloan Kettering, I suppose). Also, the hospital facilities are top-notch. Right now, they're mostly at Robert Wood Johnson as the CINJ is still being finished inside. PM me if you want more info. Best wishes, and keep the faith! Barbara

{{{{{{{Norme and Buddy}}}}}}}} You're in my prayers every day anyway, but I'll send up some extras! Much love, Barbara

My prayers are heading your way, too, Cheryl. Hang in there! For some unknown psychological reason, I'm finding new testing a bit easier to take, even when the results are not great. I guess I'm closer to truly doing that "one day at a time" thing. Now that I typed that, I'll probably be flipping out at my next test. Barbara

I really like the idea of people posting details in a profile of sorts, and limiting the signature to a few lines. I've tried to keep editing my own signature to keep it short, but I've worried that someone in a position similar to mine might miss details of procedure, timing, etc., that could be helpful to them. I *do* find the detailed signature info helpful, but putting it in another place would make reading the boards a whole lot easier. My two cents, Barb

Bruce, DON'T WAIT! Call your onc's office now--someone is always on-call. They'll probably send you to the emergency room today and you'll get admitted. There are worse things that could happen! I'm sure the ER will do the x-ray, and they won't do another tomorrow unless they think there is dramatic change one way or another in less than a day. Don't screw around with this! Warmest wishes...I don't mean to be harsh...hope it didn't come out any way except CONCERNED. Barb

Friends, This is going to be long-winded, but this story might help someone in one way or another, so here goes: Around the time of my CT scan on Dec. 12, I wasn't feeling very optimistic. I had a slight cold. I was having some added shortness of breath and pain in my right chest/side. But, I resolved not to jump the gun getting radiologist's report right away, and to wait until I could get the doctor's word. (I have previously made myself nuts getting reports that I didn't completely understand, waiting on doc's interpretations which were always better than my layperson's understanding.) On Dec. 18, I went to the onc's office to get a new pain scrip, and asked the nurse to have a doc call me (regular onc was on vacation) to tell me about my CT scan. I told her I wasn't feeling great--though not awful--and was afraid the cancer was progressing again. I just wanted to know one way or another. Alterna-doc called and said scan showed "very slight" progression, that shouldn't account for new symptoms. That made me feel better. I told him I was recovering from a cold but no fever, and he agreed that might just be the problem. I went ahead withh my annual blow-out holiday party on Dec. 20, surrounded by 40 family members and friends, but this year they did all the cooking and most of the clean-up. The night before Christmas Eve, regular onc calls at 7 p.m. out of the blue. He's just returned from vacation, and is catching up on his patients and their files. He disagrees that progression is "slight," but doesn't elaborate. Wants to see me before New Year's Day, and says he now wants to try another chemo regimen before Iressa, starting soon. Oh, great. Meanwhile, I'm not feeling any better, although I felt pretty great on Christmas Day itself and had a lovely holiday with family and friends. At this point I'm taking at least some pain meds every day, which I haven't done in months. Then the weekend hit, the coughing really started, including prodigious amounts of yukky stuff and sharp chest pains. Uh oh. Go for chest x-ray Monday, doc says go home, he'll see me at appointment scheduled for next morning. By Tuesday morning I actually feel better than I had over the weekend, but onc is not happy. Phone consultation with pulmo and I'm admitted to hospital. Happy New Year! Like I said, it could have been much worse. Yes, I had (still have) pneumonia. But Tuesday the doctors were talking bronchoscopy, and possible stent insertion in my airways. However, another CT scan done Tuesday night showed *no* airway obstructions and *no *possible need for a bronch, either. Just some IV antibiotics and rest. I spent 3 nights in the hospital including New Year's Eve and Day, but they let me out Friday with oral antibiotics and a promise I'd call immediately if symptoms worsened again. They haven't, thank God. I feel a little better every day. I'm seeing the pulmo on Tuesday, and probably the onc too. I'll finally get more info on what the cancer is actually doing, the rationale for more chemo (possibly Gemzar with CPT-11), and make the appointments to start this new round of treatment. The moral of this story is don't ignore symptom changes! I was actually watching out for pneumonia, but didn't act quickly because I never had a fever. Bad idea! I will be more diligent in the future. As an aside, I was very pleasantly surprised by the cancer floors at my hospital (Robert Wood Johnson in New Brunswick, NJ). All the rooms are private, with TV, VCR, CD player and personal refrigerator! Visiting hours are 24/7! And all the personnel were fabulous--kind, compassionate, knowledgable and friendly. This makes me feel better about any future hospitalizations that could be required. Happy New Year everyone! Barbara PS: I'll be posting a new picture with my boot-camp hairdo when I get a chance, before I lose it all again.

It's been more than 3 weeks since my last visit here. So much difficult and sad news, and I've only read through this "late stage" forum. My prayers are with Annie and Tim, Norme and Buddy, Kim on the loss of her mom.... This is just such a terrible disease, and bad news during the holidays seems especially unfair. In 1980 I lost my then 18-year-old brother between Christmas and New Year's and we buried him on New Year's Eve. The holidays weren't right for me for many years. It does get better with time. I have much news as well, but I'll make it another post. With prayers and warmest wishes to everyone for 2004, Barbara

Greetings all! I was just getting ready to post an update, and read Ry's plea that we let *someone* know what's going on so the members of this board don't think the worst. MEA CULPA! Since I've never been anything but brutally honest, both here and in real life, I'll state the obvious: I've been so busy trying to live my life as normally as possible, that I'm just not here very often. I'm truly blessed to not be debilitated at this point, and I just don't want to dwell on my condition. I hardly work, now collect Social Security Disability (THANK YOU NORME), and still haven't got out all the Thank You cards from my summer wedding. Instead, I'm doing fun and meaningful things: Thanksgiving at my parents' house, with my sister and brother and sister-in-law, and their six adorable kids. The day after, I cooked dinner for hubby, my two stepsons and assorted others, including grandson (neat trick how I have a grandson without having been through labor! ) This past weekend, hubby and I made gingerbread houses and I started the Christmas decorating while we were snowed in. As far as my attempt to quit smoking cigarettes, results have been lousy. While Welbutrin definitely curbed my physical cravings, my psychological cravings have been more difficult. To make a long story very short, I became severely depressed. I'm not sure whether it was the discontinuance of another anti-depressant, my mixed but *huge* struggle to *just stop*, or a host of environmental things, but hubby and I agreed one teary night that I should just go back to the other antidepressant. Anyway, after another visit to the pulmonologist, she agreed that being severely depressed was not acceptable. She advised the patch, which I used diligently for another week. For me, the difficult sleeping, the vivid dreams, the being on the verge of tears most times, is not worth the trade-off. Right now, I'm trying to keep my terrible habit down to some acceptable level (there probably isn't one, I admit). I share this knowing that there are people reading who still smoke. I sure as heck am not offering them any excuse to continue this awful and dangerous habit, but to share how difficult it can be to quit, especially when other underlying conditions like depression can haunt at every turn. All I can say is keep up the fight! I am. Next CT scan was rescheduled from tomorrow to Friday, due to some insurance BS, and I fear the worst but hope for the best. And, instead of running for my copies of the scans and report, I'm off to Washington DC for a party and sightseeing this weekend. There will be plenty of time next week to discuss the results with onc. Best wishes to all for the happiest, most joyous and most healthy holiday season, Barbara

AMEN Dave!

Angie, Regarding Celebrex, there was a study that showed that patients who took 400 mg/2 x day while having Carbo/Taxol chemo had significantly more tumor shrinkage than those who had chemo alone. There is also some evidence (I can't cite anything in particular, since I've read so much) that Celebrex alone might help cancer patients, but the evidence is anecdotal and somewhat theoretical. Since I had a fair amount of joint pain from my Carbo/Taxol treatments, my onc had no objection when I suggested adding Celebrex to the mix. He was familiar with the studies done, thought there might be some flaws, but saw no harm in prescribing it anyway. I take 200 mg/2 x day, and continue now even though chemo is over for the moment. As far as Iressa is concerned, it's my understanding that it helps a relatively small percentage of advanced NSCLC patients, but when it works, it *really* works. Whether a patient is one of the lucky ones usually is evident within 3 or 4 weeks. The significant potential side effects are diarrhea and an acne-like rash, but not everyone is affected. One of the big advantages that doctors touted when Iressa was approved is that it had significantly fewer side effects than chemo, and that they were totally reversible when the drug was stopped. As soon as my now-stable disease shows any sign of progression, my onc is putting me on Iressa. There is a clinical trial, in the final stages of development, that I will get involved with if the trial is ready when I show progression. It will pit Iressa against another agent, that apparently shows much more promise than Iressa in late stage NSCLC. Question your onc! I haven't heard "too many side effects" about Iressa, just the opposite! Barbara

You *go* guys and gals, especially Fay! (Love your photo, by the way. Hubby came up behind me and saw it and said "that's you!" ) It's unfortunate that so many people treat authority figures, like doctors, as gods. They are human, just like the rest of us, and even the ones with the best intentions and knowledge make mistakes. And sometimes the well-intentioned people in their offices make mistakes. That's to say nothing of the humans who are also incompetent, uncaring, unorganized and ill-informed. We need to keep emphasizing to everyone who comes here how important it is to be informed, and to take charge of their/their loved one's care. And, echoing what Norme said, I'd love to see a standing post in the "newcomers" section regarding just this sentiment. We could certainly include a disclaimer that none of us are doctors, but as experienced patients and caregivers we advocate that people learn all they can, suggest how to work with doctors and insurance companies most effectively, and what questions to ask and tests to expect/demand as the process progresses. I certainly did my research right from the DX, got recommendations about oncologists, and asked a lot of questions. I also had a forceful conversation about 3 weeks after my diagnosis with an insurance CSR because they sent me some BS paperwork about coverage, even though I followed my Primary Care Physician's directions to the letter. After that, I reviewed my policy carefully, and have since been covered, without question, on everything. It's mostly about pre-authorization and making sure you've got it. We need to share our experiences and knowledge with others so they don't have to go through such crap. I wish I had found this board much earlier, but I'm so I happy I found it eventually! Barbara

Norme, Let me echo what everyone else has said. Of *course* you're entitled to feel sorry for yourself now and then. This awful disease takes its toll on everyone involved, not just the patients. Sometimes I think my wonderful husband and all caregivers are affected at least as much as us patients. Don't be afraid to ask for help from anyone, on this board or in your life. It sounded like you were bordering on clinical depression, but managed to pull yourself out. If it happens again, and lasts more than 3 weeks, please see a doctor yourself. There are numerous treatments available for depression today, and sometimes just a prescription to help you sleep can be enormously helpful. Not getting enough sleep makes you feel worse, which fuels the depression, which makes you feel worse, ad nauseum. My best to you and to Buddy, Barbara

Cheryl, Words can't express my deepest sympathies. God bless you and your family at this difficult time, and please lean on this board. Barbara