jaminkw

paperback: I was on another site and saw this and immediately thought of you. Keep looking for the specifics of your mom's situation. They may not be the same but here's more hope: "James was diagnosed 6 months (to the day!) ago, with stage 3B NSCLC. He did 4 rounds of chemo (Carbo, Taxol, Atavastin) and then 3 weeks of IMRT. At MDA, they don't use the term remission, but our oncologist was shocked and extremely happy with his progress. She was going to do another round of chemo, but with these great results she no longer feels it is necessary. We are now in what I can only call the maintenance stage of every 3 months scans." I know it's giving me hope with my IIIB. Judy in Key West

Mary: Remember I have chemo brain--is Murphy's Law the one that says whatever can go wrong goes wrong? If so, that's how Bill's profile reads. I feel like mine went like that for awhile but not as extreme as Bill's. When I started to focus on a single issue, I started to be able to focus a little more but Bill has so much going on. It must be really really hard. As far as that leap of faith, I banged headlong into it when I got to the Avastin maintenance and haven't resolved it in my head yet. I'm on it but don't know for how long. Aren't we all always waiting for some test or another. Mine is a CT/PET on April 1. Have a great day. Judy in Key West

Hey Ned, thanks for backing me up. Obviously, I need 60 winks and hit the sack before you guys. I missed the backsplash problem. Now, when my company leaves, I need to work on the color issue making my dates stand out. Judy in the am in Key West

Barbara: Usually I'm the one asking for tech help but here goes. Looking back at my "My Profile," I think this is what I was told to do. Go back to your "My Profile" and place your cursor before the first word of the first line and insert this: then go to the beginning of the line below the last line and enter [\size]. These [ ] are brackets, not parentheses. If it doesn't work let me know or look for Ned in Hawaii and pm him. Tell him Judy sent you! Hope this helps. Judy in Key West

Alice: I did it, I did it! Sorry but Barbara helped me figure out how to reply individually to people within an ongoing discussion and I couldn't help celebrating after I posted her and then you and it worked! Welcome. I just joined the other site because I already move between this and onctalk.com and it's helpful when I get restless in between infusions. This is still the most comfortable for me as well even though I occasionally feel like an outsider because everyone seems to know everyone else so well. I'm not big on pushing people to do a profile because it really took me awhile to tackle it in spite of the urgings of others. But--I would really like to know a little bit more about Bob's journey. I was diagnosed in October 2007 IIIB inoperable and am impressed with his NED since 2006. Just a few details in a post would be great--like what kind and what kind of treatment, i.e. surgery, radiations, chemo? Again, welcome aboard. Judy in Key West

Barbara: I'm not sure if I'm doing this right or not. My intention is to reply to both you and Alice. I hit the quote button and it copied your whole first post but here goes. I went to the other site too. I'm going in once a day for awhile but I don't feel the same kind of energy I feel here. I do enjoy going from here to onctalk.com. They really serve different purposes for me. I get the sense of community here and some really good academic stuff there. My main purpose for posting. Please don't worry about a profile being too long. I've left a lot of stuff out of mine but realize I really appreciate the info in others, even the long ones that take a lot of time to read. Maybe even especially the long ones (like Rich I think???) because everytime I go through it, I really how long term a survivor he is and how much he's been through to still be so positive. So--think hard before you cut! Judy in Key West

O.k. Snappy, you are Mary. I get that now and no, you didn't go off subject. I was just confused that I had responded to you and when I went back to the top of the page to reread which I often do to refresh where the thread started, there is a post from Manifest to whom I also responses. It seems to me now that one led into the other and it threw me for a minute. One of the things I regret the most about this disease is how mentally fuddled I am so much of the time! Judy in Key West

I want to apologize to you Manifest because my post was to Mary. But I started reading the posts and they looked like they shifted subjects a couple of times. Anyone out there, am I losing it? Judy in Key West

Mary: It does get better but for me it's been a very slow process. I can think of at least four visits to the doctor since my diagnosis that I came out with really hard stuff to process. I credit that to the fact that I need to get less than positive info a little at a time and our healthcare professionals are sometimes sensitive to that. Consequently, my doctor tends to give the info as I ask or she perceives from my responses that I am ready. So little by little I've learned about my particular situation and it's an upheaval each time dealing with the new info. Hang in there. Don't try to "get it" all at once. Pretty soon you get all you need to know at the moment. I'm not counting on the even keels lasting too long but as long as it gives me time to digest it, I recover. Try to relax just a little and let the site support you between doctor visits. That's what I do. Hope it works for you. Keeping you and your husband in my thoughts. Judy in Key West

Paperback: I'm a new member too and I know how overwhelming it can be to do the profile. For me it meant living the finding out all over again but I eventually got to it. Although doctor's may not say exactly the things you're quoting them as saying about your mom's prognosis, we do interpret the way we sometimes need to hear things at the moment to stay hopeful faced with a III or IV dx. When I asked the doctor how long I'd be on Avastin and she said "until the disease progresses or the person gets tired of doing it," and she confirmed it would be every three weeks for the indefinite period, I went numb. When I went home, I "heard" it over and over and freaked. Down the line when I had processed it, I started recalling other things she said that were more hopeful: Well, we haven't seen the CT/PET yet. I also recalled the reply of a PA to the Thoracic surgeon when I first got the IIIB dx. I asked (because she was standing beside me as people were bustling around) is this a lifelong thing? She said it could be or they could go in there and zap it (later learned this was related to what one chemo nurse called "heavy duty stuff" I was getting) and then she (the oncologist) could follow you. Take it one day at a time. Probably the first thing is to find out what kind of cancer your mom has and particularly whether it is small cell or nonsmall cell. That tells you a lot about the character of the cancer. It was one of the first things I learned when I found out I had cancer--that an adenocarcinoma. I didn't even know the significance of the terms at the time. Do make sure someone goes to visits with your mom. I've been advised many times to have someone take notes or take a recorder and know it's good advice but haven't followed it yet. It all good advice but we do things in our own good time when we are confronted with this disease. You or whomever goes with your mom will probably have this clarified by the doctor her next visit. In the meantime, don't focus on the specifics of the message and just assume that it was probably positive. You're in my thoughts during these turbulent times. Judy in Key West

No but all the survivors on this site say don't listen to the negatives or the stats that go with the dx. What a fabulous story! I understand you must feel like it's too good to be true but enjoy. Your mom must be over the moon. Or is she skeptical too? I hope not. Judy in Key West

Barbara: Thanks so much for your kind words and support. I pm'd you a reply. Judy in Key West

Barbara: Thanks to you--for the other site info but especially for the tech info I'm usually bugging Ned for. I didn't even know you could respond to each person individually let alone how to do it! Thanks again. Judy in Key West

Muriel: I go to MD Anderson and didn't even know the oncologists are specialized there. All I remember is someone telling me she was the head of the medical oncology department. So you think she's a lung specialist? Come to think of it the husband of someone on this site goes to her too so maybe she is. I like her alot but just on principle would really like it if she specializes in lung cancer. Judy in Key West

Sandra: Think it's a conspiracy? Nobody is naming "the other site." I'm curious too! Judy in Key West

As a relative newcomer myself, I can tell you you came to the right place. There are lots of people here, patients and caregivers, who will offer you much support and answer the many questions you'll have along the way. Hang in and good luck. Judy in Key West

Oop's, 3 years not '03 but it's still awesome. Judy in Key West

Haven't been around since '03 but wanted to say hi. I'm a flower freak and panies have always been one of my favorites. Also, your husband is doing great since then as a IV so he's an inspiration to those of us who are also III/IV's. I'll keep you and him in my thoughts. Judy in Key West

Oh Maryanne, that was priceless. It helps me missing my Fred fix. Where's Fred?

First I don't know from your Mom's profile if she's a or b? The only reason I ask is because it's generally felt among some hospital staff who work with patient finances that IIIb lung cancer is fairly certain to allow disability payments. My advice would be to file as soon as you can after your mother stops working. They can tell you they have bizarre rules like you have to wait five or six months after filing to get approved and it's a standing rule that you don't get medicade until you've been on disability for two years unless you qualify for very stringent minimum annual income requirements. Don't give up on getting help for your Mom. Some hospitals or cancer centers have personnel in finance who can help. You just have to ask. I'm sure many on this board know what it's like to have the stress of beig dx'd with cancer compounded with how you're going to pay for it. Judy in Key West

I'm grateful I was born with the optomist gene so I can keep bouncing back. I'm grateful that my husband went to a picnic without me today without trying to convince me to go: I said you'll just have to go without me. He said why, and I answered I'm getting frustrated with everything trying to get ready because I just don't want to go. He brought me back a hotdog. I'm grateful, we did good! Judy in Key West

Sandra: Congratulations! Who wouldn't be over the top. What a gift to you, your doctor and his staff, and a gift of hope to all of us who have received the dreaded IIIb dx! Oh, and thanks for giving some of us who don't know a cue about the "virtual pub." Judy in Key West

If the hospital where you got your second opinion is a very high ranked teaching hospital one would expect they would give you appointments within a safe timeframe. I would call back and tell whomever made the appointments that you are nervous about the timeframe and would like to speak to someone on the oncologist's team to get reassurance. If it would be helpful to get the scans locally and take them with you, ask the teaching hospital that as well. I took scans from a diagnostic clinic to MD Anderson Cancer Center and was going to get my followup CT/PET there as well. I changed my mind but until then it was acceptable to my oncologist at MDACC. The decisions we have to make in the course of this battle have proven to be one of the most difficult things for me. Good luck.

Greg: Lots of important information but my question is about your reference to "Medicare-approved assays are the DISC, MTT and ATP, known as Oncologic in Vitro Chemoresponse Assays. In 2006, Medicare officially recognized these cancer assays as a special test category in Federal Regulations (42 CFR 414.510((3), 71 FR 69705, 12/01/2006)." I've never heard of these tests. I'm not on medicare until Feb 09 but do you know where these tests are being done and under what circumstances? Judy in Key West

Patti: Thanks, I needed that. And I read your profile so it's high praise considering the source. Judy in Key West