recce101

Hi, and welcome to the LCSC. When you get a chance, you should start a chronological "profile" of your sister's initial symptoms, her diagnosis as determined from tomorrow's surgery, and later her planned follow-up treatment (chemo and/or radiation) and side-effects/response to treatment. Click the "My Profile" link at the top, scroll down to the "Signature" block to enter/update your information, and ensure "Always attach my signature" is marked "Yes." This will save you a lot of repetitive typing each time you post a question or comment. Best wishes to your sister for a successful and uneventful surgery. Let us know how it went as soon as details are available. Aloha, Ned

Yes, click "My Profile" at the top, scroll down to the "Signature" block, enter/update your information, and ensure "Always attach my signature" is marked "Yes." Excellent decision on the switch to UW for a team approach. But I also think your first pulmonologist deserves a lot of credit for making it easy for you to change. Maybe you should write him a nice thank-you note in a couple of weeks and let him know how the procedure went. He's apparently more concerned about his patients than his ego and may be a great doctor some day. Best wishes and Aloha, Ned

Hi, and welcome to the LCSC! Here's hoping the tumor continues to shrink, and while perhaps not technically curable at this time, can be managed well enough to not unduly hamper your lifestyle. You'll find plenty of NSCLC Stage III and IV folks on this site successfully "living with cancer." When you get a chance, please start a "profile" of your symptoms, diagnosis, treatments, and test results like you see at the bottom of most of our messages. Click "My Profile" at the top, scroll down to "Signature," enter/update your information, and ensure "Always attach my signature" is marked "Yes." Will save you a lot of repetitive typing each time you post a question or comment. Best wishes and Aloha, Ned

Hi, Tammy, and thanks for sharing the good news! Gives us all a lift, especially those who have Alimta as a treatment possibility somewhere down the road. Also happy for your dad, who's been through a lot the past few years. Best wishes and Aloha, Ned

Hi, Mary, and welcome to the LCSC! I know your "neck of the woods" quite well, or did at one time --I went through Primary Pilot Training at Bartow Air Base, a few miles south of Winter Haven, in 1957-58. Loved the area. We have a number of people with BAC in the group, and new members with known or suspected BAC are frequently posting. I'm sure the newbies can benefit from your perspective, and you might even learn a thing or two from those who started down the road before you did. When you get a chance you should start a "profile" with details of your symptoms, diagnosis, treatment, and test results like you see at the bottom of most of our messages. This will save you a lot of repetitive typing each time you post a question or comment. To create a profile, click the "My Profile" link at the top of the page, enter/update your information in the "Signature" window, and make sure that "Always attach my signature" is marked "Yes." Best wishes and Aloha, Ned

Hi, Yvette, and a "long overdue" welcome to the LCSC! Taxol and Carboplatin with no side effects except losing hair -- wow, that's fantastic!! Your dad is obviously a very healthy guy, notwithstanding his recent bout with pneumonia. I didn't see in your message or profile the cell type of your dad's cancer. Since you mentioned Stage IV, I assume it's non-small cell (NSCLC), but do you know the specific cell type such as adenocarcinoma, squamous cell, etc.? That would make a difference when it comes to choosing the next line of treatment. If you could get that info, together with more details on his test reports, what's been said about radiation, and that sort of thing, your might consider posting a question for Dr. West on onctalk.com. There's a good chance you'd have a response by the time of your dad's Friday appointment, which would give you some good background when the next treatment plan comes up for discussion. My best wishes and Aloha, Ned

The phenomenon known informally as "chemo brain" has come up frequently in discussions but apparently hasn't been studied as thoroughly as some other chemo side effects. You can get a long list of references by typing "chemo brain" (INCLUDING the quote marks) in a Google search window. To limit the list to LCSC posts (it's still a pretty long list) type this in a Google window: "chemo brain" site:lchelp.org That works better than the LCSC search window, which doesn't limit the list to occurrences of the phrase "chemo brain" but also includes all occurrences of the individual words. I was having some of the symptoms you describe around my 5th and 6th taxol/carbo/avastin cycles, but not so much now that I'm on avastin alone. My impression was that the brain was simply overloaded from trying to deal with the multiple cumulative side effects of taxol/carbo throughout the body rather than being affected directly, but maybe both things were going on. Aloha, Ned

Apparently so with some patients. My lung function was considerably improved after the first cycle of taxol/carbo/avastin and again after the second cycle. After the third cycle, further improvement was minimal and side effects began to increase. This seems to be a fairly typical pattern -- somewhere around the fourth to sixth cycle the side effects start to overshadow the benefits and it's time to make a change. Here's an article by Dr. West on this subject: http://onctalk.com/2007/01/17/duration- ... ng-cancer/ Aloha, Ned

That's very common, Lynne. It's one reason diagnosis comes so late for so many of us. But assuming your biopsy confirms cancer, it appears that it was caught early enough for surgery to be an option -- which (as strange as it may seem) is considered good news with this disease. When you get a more complete diagnosis, be sure to give us the details. A convenient way to do that and keep everyone updated is in a "profile" like you see at the bottom of most of our messages. Saves you a lot of repetitive typing whenever you want to post a question or comment. Welcome to the LCSC. You'll find plenty of knowledge and support here, I guarantee. Aloha, Ned

If you don't know the surgeon, you might even consider telling him up front (before he lays out his plan) that you'll likely be seeking a second opinion. The way he reacts to that could give you some useful insight. Some bring up the subject from their side, saying you are welcome to get an opinion from another surgeon. That, I like! Aloha, Ned

Dr. West has a good number of items on first- and second-line chemotherapy for NSCLC. Here's one: http://onctalk.com/2007/01/17/duration- ... ng-cancer/ You might want to post a question for him on onctalk.com -- give as many specifics as you can, including the cell type if you know it (adenocarcinoma, etc.) He answers very promptly. Best wishes and Aloha, Ned

I think you're right. My wife made a similar comment when she heard about Dana. As facilitator of a caregivers' support group the past 10 years, she's seen many cases where the caregiver, seemingly in good health, took ill and died just a few months after the spouse or parent they were caring for passed on. Some even died first! Aloha, Ned

There ya go, sounding much better already! I think you'll do just fine. Keep posting and you can expect lots of tips, such as things you can do before surgery day to make your hospital stay and your recovery as smooth as possible. Barb mentioned stocking up on some of your favorite foods. One I'll throw in is to move frequently-needed items to drawers or shelves that you can reach without any stooping down or stretching up -- say mid-thigh to shoulder level. You'll welcome some help at home for a few days, but you'll probably be surprised how much you can do on your own with some advance planning. Aloha, Ned

I'm really sorry your meeting with the surgeon didn't turn out as you had hoped. Your mind is obviously going at breakneck speed trying to make some sense out of all this information, wondering if you should seek another opinion, attempting to devise some way to avoid the surgery that is scheduled just 10 days from now. One thing I know is that for the best surgery outcome, assuming that the planned surgery becomes a reality, you need to be less stressed than you are right now. You need to be confident in your surgical team, at ease with your decision to proceed with the surgery, and relaxed enough to tap into the healing powers that permeate the universe and are available to all of us regardless of our religious or philosophical beliefs. Easier said than done? Definitely. If you haven't already, you might try to identify and explore the "real" reason you are so resistant to the surgery. Your complications last March? Another person's bad outcome? What you might be told after you wake up? Something else? Of course this is a personal and family matter, and you don't owe anyone here any details that you're not comfortable sharing. Wishing you peace of mind and the best of results. Aloha, Ned

In addition to the great advice you've already received, you might want to run this question by Dr. West at onctalk.com. But remember that everyone reacts to chemo a bit differently, so you need to stay FLEXIBLE -- "the best laid plans of mice and men..." Here are some things from my experience that might interfere with those plans: Your body says "a nap would really feel nice right now," although you've taken few if any naps in recent years. Take that nap! The need for extra rest will probably vary depending on where you are in each cycle. Foot rash or neuropathy make your favorite forms of exercise (including walking) difficult and painful. Devise an alternative! You can get a decent leg workout flat on your back, and good upper body exercise sitting in a chair, neither of which requires those hurting feet to have more than momentary contact with the floor or ground. Sore mouth and tongue, sensitive stomach, and other GI tract problems limit your ability to tolerate certain foods, even lifelong favorites. Eat what you can, when you can! Don't worry about following a balanced, ideal diet -- it's more important to avoid losing weight, and you won't be on chemo forever. It can be helpful to gargle with a mixture of salt, baking soda, and warm water, and to set aside your usual toothpaste in favor of that combination or simply baking soda and water. Best wishes and Aloha, Ned

Dr. West discusses Alimta several places on his onctalk.com website. Here's a link to one: http://onctalk.com/2007/01/31/alimta-as ... therapy-2/ He also promptly answers questions posted on his site. Aloha, Ned

I know exactly what you mean. That's the problem with lung cancer, and why so many cases are not diagnosed or even suspected until they're rather advanced. The combination of CT scan and PET scan is probably as good as it gets for noninvasive evaluation. But even that is not 100% definitive (things other than cancer can result in similar scans), so a biopsy is generally required for an actual diagnosis of cancer. You didn't say where the nodule is or if there's more than one, but during your consultation Saturday the surgeon should lay out the various possibilities for you. If your condition is potentially operable (a good thing!) he/she may be able to start with a minimally invasive procedure (via scope) to obtain a tissue sample for immediate analysis, then if cancer is confirmed (and while you're still "under"), proceed to the next step. You should be straightforward with the surgeon and express your concerns openly -- remember that he works for you, not the other way around! And be equally open during your preop consultation with the anesthesiologist, a very important member of your surgical team. Please let us know how your Saturday session goes, and give us some details on your situation, preferably in a "profile" to save you some repetitive typing each time you post. Best wishes and Aloha, Ned

Wendy, CONGRATULATIONS -- in another 30 months I hope to make a similar announcement!! Aloha, Ned

I wonder if that's what the insurance company is actually paying, or if the $20,000 is more for show than anything else. Back when I was on commercial health insurance, I noticed that the "amount charged" for a couple of simple outpatient ear surgeries was over $3,000 each, but insurance actually paid around $1,200 each time and my statement stated this was a negotiated amount that the hospital had agreed to accept as payment in full. I was never billed for anything. I'm on Medicare now, and the "amount charged" for each of my avastin treatments is $10,080. A more meaningful figure is the "Medicare approved" amount of $6,825 which the provider, in taking "Medicare assignment," agrees to accept as full payment. Of that amount Medicare actually pays 80%, or $5,460, and Tricare for Life (I'm a military retiree) pays the remaining $1,365. All these medical billing intricacies are way over my head. Aloha, Ned

Candy: Welcome to the LCSC. This is a remarkable group, filled with compassionate and knowledgeable people who have "been there" as a patient, family caregiver, or both. Don't hesitate to ask about anything that may concern or puzzle you -- there are no dumb questions, and you are sure to get helpful first-hand information on just about any lung cancer situation you can imagine. Also, you should check out onctalk.com, founded by an oncologist in Seattle who specializes in lung cancer. Dr. West promptly responds to questions/comments posted on his onctalk.com forums, and he answers questions in real time on a special LCSC chat session every couple of months. As someone has already mentioned, it would be a good idea to create a profile for your dad, with details on his diagnosis, treatment, and test results to date. That saves a lot of repetitive typing whenever you want to post a question or comment. Click the "My Profile" link at the top, scroll down to "Signature," enter/update your information, and be sure "Always attach my signature" is marked "Yes." Best wishes and Aloha, Ned

Laurie: Dr. West, who frequently posts here and does a live chat session with LCSC members every couple of months, discusses topotecan a few places on his own website -- for example: http://onctalk.com/2007/01/07/treatment ... rent-sclc/ If you post your question on his SCLC forum you should receive a prompt response: http://onctalk.com/forum/sclc/ Best wishes and Aloha, Ned

Congratulations and Aloha from the OTHER Ned!!

Hi, and welcome to the LCSC. You certainly have the right idea on how to best help your mom, and I'll add just a few "enhancements" to what you're already doing. If at all possible, you should try to accompany your mom to all of her chemo sessions and oncologist visits. With chemo about to start, her schedule will be a lot less hectic than it has been up to now, with the various consultations and tests jammed into a short time period. If she'll be on a 21-day chemo cycle, which seems to be the most common these days, then we're talking about a couple of days every three weeks, or maybe three days if there's a scan of some type needed that cycle. You're there not only to support your mom directly, but to listen, ask questions, and take notes. Many people use a tape or digital recorder when meeting with the onc -- while you should ask him/her if it's okay, I've never heard of one objecting. Also keep notes of your mom's side effects as they develop and then (in many cases) go away each cycle. You won't always know what drug is causing a particular problem, but by keeping track of dates, a pattern may emerge. Sometimes a problem may not be a side effect as such, but rather a previously existing condition that's become worse and more bothersome because of lowered resistance, poorer circulation, etc. brought on by the chemo in general. If your mom is the stoic type who doesn't like to "bother" the doctor or staff with what she considers a minor thing, you may need to be the one who makes the call. I was surprised how seriously my onc took blisters, slow-healing incisions, and other skin conditions that were at risk of becoming infected (I was put on oral antibiotics four separate times during my six cycles of Taxol/Carbo/Avastin). Infection is a really big deal because it can require treatment to be interrupted. Adenocarcinoma is probably the most common, best studied, and most treatable form of NSCLC, and you'll find many people on this site with an initial diagnosis of Stage IIIB or IV who have done quite well. We'll do everything we can to help your mom become one of those success stories. When you get a chance, you should create (and frequently update) her profile to save you a lot of repetitive typing whenever you post a question or comment. Click "My Profile" at the top, scroll down to the "Signature" block, enter/update the information, and be sure "Always attach my signature" is marked "Yes." Best wishes and Aloha, Ned

Aaron: I had my first experience with neuropathy during my 6th Taxol/Carbo/Avastin cycle. It cleared up in 2 or 3 days with the prompt use of Neurontin and so far has not returned. Another member had asked about neuropathy in late January, and I've quoted the major part of my response here: Hope you get this under control soon! Aloha, Ned

Kasey: The only other thing I could suggest is to check with the Highway Patrol, State Police, or whatever you call that function in PA. I spent three winters in Morgantown, WV, as an Air Force ROTC instructor, and anytime I needed to drive in questionable conditions the troopers there always had the latest in road conditions and were very helpful. You may not hear anything different from what you've already heard, but at least you'd have a "second opinion" from a reliable source. Aloha, Ned