BarbaraL

In my very short time here it's clear that Katie and Rick are driving forces! Thanks for being here, and thanks for staying! Barb

At 8:40 p.m. EDT, I'm thinking of Judy. All prayers and good wishes continue! Barb

ACK! New photo is *huge* LOL And, by the way, it's a wig. Barb

Yesterday I went to the Cancer Institute of New Jersey for a second opinion. Aside from a fairly long wait (grrrr), I was very satisfied. The onc I saw specializes in thoracic onc, so I figured he was one step closer to anything new in terms of treatment. Also, he had a great bedside manner, and seemed to really read me in my ability to grasp what he was saying and my ability to ask (intelligent? LOL) questions. He just kept giving me information until I was satisfied, and in a very understandable way. He basically told me that my onc's treatment plan is what he suggests (though I didn't tell him about future plans, only treatment to date). He filled in a lot of details that my regular onc hasn't explained adequately, so the whole visit has given me considerable piece of mind. Because the consulting onc is at a comprehensive cancer center, he has access to many up-and-coming drugs through clinical trials. My regular onc had always planned to put me on Iressa at some point, and I'm going to consider participating in a trial the consulting onc mentioned. He said the drug is similar to Iressa, and that preliminary findings are that it performs much better. I'm pretty sure it's a Phase III trial, but I'll investigate that when I'm at that point. Finally, at the end of our consult, the doctor left me with a great deal of encouragement. He said "You have three very important things on your side--you're *definitely* responding to treatment (with minimal side effects), you're young, and you have no other health issues." So, let's here it for the docs out there who not only know their stuff, but know how to communicate and end on a positive note! I think I'll start making plans for a January/February vacation! Love and good thoughts to all, Barb PS: Hope my new photo looks okay. Guess I'll see when I hit submit *now*

Tam Tam, So glad you've joined our group -- but so sorry for the reason. Has your husband applied for any kind of disability insurance payments? Some companies offer it as a standard benefit, and many states have it as well (I don't know about Missouri). You also might call Social Security (visit http://www.ssa.gov to get their phone number). I was pleasantly surprised by the nice woman I spoke with when I called. Just make sure you have your husband's SS# handy. Also, call your medical insurance company and find out whether they cover any kind of home health aid. You might also try navigating the local or state social services agencies to see if you qualify for some help through them. Even food stamps might be available, depending on your situation. Fighting this dreaded disease is tough enough, without worrying about finances too. You two are in my thoughts, Barbara

Sam, Don't despair about leaving work -- it's time to take care of *you.* I'm sorry you've had a bad few months, but that just underscores the need to take whatever time you need to recover. Even though you don't have MPE (which I do), you might consider applying for Social Security disability, while you continue to hope to eventually return to work. I checked out their website (www.ssa.gov) after someone here suggested that to someone else, and was surprised to see my specific diagnoses listed as *de facto* permanent disabilities. I'll admit that I spent a few days being pretty depressed, thinking that the federal bureaucracy considered me terminal. But, I got over that when I thought about the thousands of dollars I've paid into the system -- and having been self-employed for the last 14 years, I've paid double what employed people paid. Heck, I pay more in SS every year than actual federal income tax!! Long story short, I was informally told last weekend that I've been approved. It's a very healthy chunk of change each month, which will start in Oct. or Nov. If you (or anyone else!) wants to go this route, I'd be happy to share my experience with the bureaucracy. All the best, Barbara[/url]

Thanks for everyone's replies! Yes, Keith, I *am* young -- 45. And, I had heard the same thing that you did regarding the Cisplatin/Taxotere regimen having slightly better results, but I had a severe allergic reaction to the Taxotere. So Carbo/Taxol was our second choice. It was weird, since I had heard that Taxotere was generally more easily tolerated, and they've often switched patients to it when they couldn't withstand the Taxol. Aside from losing *all* my hair, I'm doing very well with the chemo. Showering has become a very quick task! I'm having a second opinion on Monday at the Cancer Institute of New Jersey, one of 39 comprehensive cancer care center in the country as designated by NIH. They have a group dedicated to Thoracic Oncology, so I figure these folks are as up-to-date as can be, including very plugged-in with clinical trials. I'll post on Monday after my consultation. Meanwhile, if anyone has any specific suggestions of things to discuss with these doctors, I'm all ears. I'm basically going to tell them how well I've tolerated treatment so far, and how I'm looking to be as aggressive as possible with further treatment. Barb

Luc, Just ask your doctor for a copy of all test results and reports. You don't have to divulge that you want a second opinion. You're entitled to your own records, and you could just say you want them for yourself. I've collected copies of all my reports since my diagnosis, and realized I had never received the surgeon's or pathology report from my pleurectomy. So I asked my onc for copies at last visit -- no problem. When I went to today for my weekly CBC I asked the lab tech for a copy of that as well -- no problem, no questions. I'm going to the Cancer Institute of New Jersey for a second opinion on Monday. While I've been very happy with my treatment so far and my onc's apparent knowledge, I'm not so satisified that his future treatment plan represents my only option. Since he's a general medical oncologist he may not be aware of the most recent developments (which seem to change monthly!), and the cancer center has a Thoracic Team that specializes in only chest cancers. Since I've had a quite tolerable time with Taxol/Carboplatin in three week cycles (I've had 5), and my blood counts have stayed remarkably steady, I've just *got* to believe there're some more aggressive options out there for me to try to lick this thing! I'll let you know how it all turns out. Barb

Gloria, I'm so sorry about your loss, and angered by the doctor's nonchalant attitude. What can we do as a group to get better treatment, when so many of us lose our battles so early? Barbara

Allison! I just don't believe no one did a cytology on your dad's effusion fluid. Isn't that standard operating procedure??? Isn't that medical school 101??? It's not even like it would be a big expense to send something to the lab...there are plenty of staff on hand to do just that! I finally got my own copy of the surgeon's report from my pleurectomy and the cytology report, but no one was trying to hide it from me. I just hadn't asked for it. My onc "flagged" the pages in my file, and sent me up to the clerical staff to have it copied. I'm glad I did, because I have a fuller picture, and can provide a fuller picture to the docs giving me a second opinion in a few weeks. Best to you and yours, and *long live Warren Zevon* if only in our hearts for awhile. Barb

Absolutely beautiful.... what a tribute! Prayers to you and all, Barb

Mandy, Welcome to the board, although we all wish you didn't have to be here. Because of all the potential side effects of chemo, many of us are on many different drugs specifically *for* the side effects. I have a scrip for Xanax for anxiety and to help me sleep, which I find invaluable. For the pains you described (which are caused by the chemo itself) there are a number of things besides the obvious painkillers (which I also have). Celebrex has been used to treat these arthritis-like pains, and some preliminary studies have also shown that taking it in combo with chemo actually makes the chemo more effective. While I still have some occasional joint pain, it's been greatly reduced by my taking 200 mg. twice a day. You need a scrip for this. Also, my oncologist recommended L-Glutamine, which you can buy at any GNC or health food store. You need the powdered type to dissolve in a liquid. I was told to take 10 GRAMS three times a day starting the day before chemo and continuing for five or six days. While it *did* help me, I find the Celebrex alone does enough that I didn't use it for my last chemo (just 5 days ago). If your husband is on cisplatin or carboplatin, peripheral neuropathy (damage to nerves causing numbness/pain in hands and feet) is a concern. My doctor has me taking 100 mg. a day of Vitamin B6 to counteract this. Aside from some foot numbness that started with my first round of chemo, it has not progressed since then. This is an important concern, because neuropathy *can be* (but is not always) permanent. Ask any questions you have about anything! We're all in this together, and the information shared here has been invaluable to me. Your husband is in my thoughts, Barbara

Has anyone experience and/or information about using radiation in conjunction with chemo for Stage IIIB and MPE? From all my scientific readings, people in my situation (see signature) are often considered Stage IV by many in terms of treatment, yet I've often read of people here getting both rad/chemo. To quote my situation as it existed on 5/13/03 according to my bronchosopic surgeon: "Excellent visibility… Massive pleural effusion… 2.5 liters of fluid drained …pleural studding throughout the chest including the chest wall, diaphragm and mediastinum. On the surface of the lung, there were alsomultiple nodules evenly distributed throughout the three lobes." The pathology report on the removed pleura indicated T4NxMx. DUH! MPE is T4 by definition! I had bone and brain scans (negative) and CT scans with contrast to the pelvis and abdomen (with inconclusive results). I *do not* have confirmed mets outside the thoracic area, although a suspicious small area on the liver was never confirmed either way. I never asked that the liver area be pursued at the time, since I realized it would not affect the first-line treatment I received. In reviewing my various test results, a suspicious adrenal lesion turned out to be a non-obstructing stone, and on the other adrenal the radiologist saw little reasons to be concerned and recommended "watchful waiting"--another scan in 6 or so months. Any advice? I really like my onc, who has had very satisfying answers to my most complicated questions at the tip of his tongue. I'm strongly considering a second opinion, which can't hurt, for sure. Guidance on my specific situation or anything written above is most welcome! Love, Barb PS: I had my fifth chemo of MTD carbo/taxol today, and it's the usual feeling of being from Mars. My side effects have been few, and easily dealt with. How can I not be a candidate for even more aggressive treatment?

Add my prayers and good thoughts to all the others! You go girl! Barb

Joanie, My utmost sympathy at your loss. I hope the funeral was a true celebration of your daughter's life, and that it gave you some comfort. My prayers are with you and with your family, Barbara

Hi Cheryl, I still vividly remember my fear before my pleurectomy back at the end of May. What I kept saying to myself was "what's my choice? I have no other choice." I also kept reminding myself of how advanced surgery has become, that I was young and otherwise healthy, and that I had the utmost confidence in my surgeons and their level of experience/expertise. Just to give you some idea of what to expect, I awoke in the recovery room with the thought "well, I made it." With the next breath the pain hit, and the ultra-efficient nurse was there, asking me to rate it. I whispered "at least an 11" and she started the morphine. She was back every five or so minutes (who knows the time interval, since I guess I was not in a position to really judge) and kept giving me more until I felt better. Re-reading that paragraph it sounds bad, but it really wasn't. Just the fact that I was awake and feeling was the important thing for me. Hold on to that when you wake up!!!!! Aside from the few hours back at your room when everyone will be there looking concerned, and you'll be in the twilight zone, in and out, things will be fine. You'll finally sleep a deep sleep, when the morphine high runs its course. Also, post-surgical pain is taken very seriously these days, and they'll give you plenty of Percocet or equivalent so you won't be aware of even *being* in pain, since they'll cut it off at the pass. I'd advise you to get the hell up and out of bed as soon as you feel able. Go to the bathroom dragging your IV pole, walk around the ward (accompanied) when you're up to it, and insist they let you out as soon as you feel comfortable. (I happened to be coming out of the bathroom when my surgeon arrived, and he saw me on my feet. I said "you're letting me out today, right?" with a big smile, and he instructed how to deal with the chest tube I still had. It was a cakewalk for a few days, to be able to be in my own home, compared to staying in that damned hospital!) Finally--TAKE THAT PAIN MEDICATION. I made the mistake of trying to wean myself before I was ready--and that was about a week and a half after surgery--and never had a worse day in my life. The side effects are NOTHING if they keep the pain at bay. Also, insist on an anti-anxiety med like Xanax or Valium or Ativan to help you rest and stop thinking so much. You're a young woman. Your cancer is operable. Hang on to this! All the support and love I can offer, Barbara

Welcome, Judy, but I'm sorry you have to be here. Something is not right with your story. Stage IIIB (generally) and stage IV are considered inoperable. So the good news is I think your mom is at an earlier stage of the disease. ASK THE DOCTORS, SPECIFICALLY. Then, there will be plenty of information available from the kind folks here, once you've got the right staging info. There are plenty of folks here who have had part or all of a lung removed, and I'm sure they'll chime in with lots of personal stories. If your mom is particularly upbeat, that's great! Attitude plays such a large part in treatment, and in how someone recovers from surgery. Just make sure she gets whatever pain relief she needs, and she'll be fine. It will take time. Follow the doctor's instructions and continue to post here. There is plenty of very useful information posted every day. Take care of yourself, too! You and your mom are in my prayers. Barbara

Hi Joe, I'm relatively new to these boards and have Stage IIIB disease. The bare statistics are pretty grim, but NO ONE knows how any single individual will respond to treatment. Statistics are just collections of numbers. I've had 4 rounds of chemo so far, my CT scan after 3 treatments showed 50% reduction in the volume of my primary tumor. And, I've had few side effects from the treatment either. All my blood counts are still high, so my immune system remains in good order. Tell your dad to drink a ton of water. Also, if his diet is less than optimum, he's got to change it. Lots of fish, skinless poultry, beans/legumes, fresh vegetables and fruit. There are quite a few good books out there--I really liked "What to Eat if You Have Cancer." Good luck! Barbara

Welcome Muriel, I can't speak to whether or not you should opt for chemo, since my disease is much more advanced. However, I've had four cycles of the maximum dosage of Carboplatin and Taxol and can honestly say it isn't that bad, except for losing all my hair. I just feel really weird days 1-4, then wake up feeling fine on day 5 and stay that way until the next treatment. Some people have a really hard time with it, and you won't know how you as an individual will respond until you do it. Make sure you take all the anti-nausea meds as prescribed, drink tons of water every day and get a CBC every week. Barbara

As a relatively new member of this board, I didn't see any posts about nutritional supplements overall. I did read the highly-specific and technical info at NEF.COM, but I wonder whether anyone has come across a more patient-friendly site or article. I'm interested in information that addresses supplements to counter chemotherapy side effects, as well as countering lung cancer in particular. I'm currently taking 200 mg of B6 day to prevent peripheral neurpathy, and 30 g/day of Glutamine for the first 5 days of chemo to counteract joint/muscle pain. I've recently started 400 mg/day Celebrex for the joint pain, and because recent testing has shown possible good effects in combo with Carbo/Taxol. (All this is being done with blessing of onc). The things I've read tend to be cautionary--while chemo symptoms might be lessened, the chemo itself might be lessened in effect, too. Guidance welcomed! Love and prayers to all, Barb

My onc finally called today to say the CT scan last week was good! 50% shrinkage of the primary tumor in my lung! I'm ecstatic! Tomorrow I'll go get a complete copy of the radiologist's report. I'm particularly interested in what it says about the various lymph nodes, since I've got problems throughout my chest--hilar, mediastinal--but onc was upbeat. He resisted my questions on all this, and just said his experience was to see similar reduction in size as primary tumor. I've had very tolerable side effects so far, so I'm extra grateful that my Taxol/Carboplatin regimen doesn't have to change. Thursday is the next treatment. Bring it on! And on another upbeat note, my soulmate George and I had a barbecue bash this weekend to celebrate our 6-week-young marriage. It couldn't have gone better! The catering was fabulous, and even though everyone talked about the downpours they went through on their way to our fete, we had not a drop of rain! Gosh, I feel blessed. Best wishes to all, and keep fighting the good fight! Barb

What can I say except CONGRATULATIONS! Keep us posted. I need to hear all the good news this board has to offer. Barb

I've seen a lot of discussion here from survivors and caregivers about radiation treatment for stage IIIB and IV. Is there any general consensus about this? No one has discussed any possibility of radiation in my case. I understand that radiation is used on specific mets areas, to shrink or eliminate tumors, but does anyone know what criteria are generally used to determine the use of radiation? Specifically, I had malignant pleural effusion (the effusion--or at least the symptoms--was entirely taken care of by a pleurectomy), which some docs treat as stage IV. I've been staged as IIIB, with lymph node involvement in both the hilar and mediastinal areas. Anyone have experiences close to mine? Has radiation been used, where and to what effect? Is this something I should be pressing my onc about? I'm expecting results from yesterday's CT scan tomorrow or Monday, so anything anyone might share would be helpful and most appreciated! Barbara

Michelle, I am so very sorry to hear about Bob, and I send my prayers along with everyone else's. I hope that when my time comes, I am without pain and have loved ones like you around me. Bless you and everyone in your and Bob's life. Barb in NJ

Thanks to everyone who welcomed me. When I found and started browsing through the board a few days ago, I was struck by the lovely tone, sense of camaraderie and great information! I promise I'll let you know the results of my CT scan, and I won't be shy about asking questions, either. I think I properly uploaded a photo of George and I from our wedding day, so you can have a face to put to my name. The photo was taken June 25, and my hair was starting to thin, but what you see here was all mine. In the next few days it all fell out, and I left mounds of it in hotel trash cans up and down the Eastern seaboard. I was completely prepared for this to happen (brought a wig and hats with me), but I still laugh when I wonder what the maids must have thought. Barbara