Tarheeldad Posted February 14, 2006 Share Posted February 14, 2006 Hi, My name is Warren AKA Tarheeldad. I have a wonderful wife (Donna) and five girls. 3 of which are out of the house. Two are married, with two children each (one has a set of twins) and one will be getting married in April. My youngest two girls, 15 and 12,have begun getting preped for college, both are straight A students, and I am very proud. Just joined last night. Seem to have some wonderful people here. I have SCLC, diag. 3/12/05 when I had a CAT scan for Pneumonia I had. I was 46 at the time and I was devastated. Not really surprised, though unfortunately I started smoking at an early age, living here in great state of North Carolina as a boy every summer had to work on my granddaddy’s farm growing guess what - Tobacco. Anyway, I went to a surgeon at the referral of my family doctor. He confirmed the cancer in the left lung on the outside of the lung and in two of the nodes, center chest. Still did not know what kind it was. He operated and took out the larger tumors and left small amounts in the lung. No other signs of cancer anywhere else. With this he confirmed it is SCLC. I then went to an oncologist, she looked at what was left and told me with that little bit left that she felt confident that she could "cure" me of this with Chemo. While I was in the hospital recovering from the surgery a radiation Dr. visited with me and suggested I clean up the rest of the cancer with radiation treatment. I was reluctant to do that, radiation scared me to death. I went with the Chemo treatments, for several months I had a combination of two chemo treatments, handle them very well not much problem with side effects. Then went back for scans CT and MRI and to my surprise, the cancer had grown and SPREAD. Now I have cancer in my Brain, Lower Spine and Liver besides still being in the original lung. I was shocked after the Dr. told me she could "cure" me. Dr switched me to another Chemo drug, did that for weeks, it didn't work either. We decided then to go with radiation. Had 15 radiation treatments to the brain, spine and lung. The liver can not have radiation, as I understand it, radiation will kill the liver. The radiation worked, somewhat, Cancer gone from the brain and the spine, but still some left in the original lung and growing more in the liver. Looking back I wish I had done the radiation first instead of the Chemo. I am now in the middle of my fourth Chemo treatment, trying to find one that will work on the remaining cancer. I have to admit I'm getting frustrated at not being able to find a chemo that works. This current one I'm on, they can only administer once every three weeks, it scares me that at this slow rate of treatment this stuff is just growing and growing inside me without knowing if this one is working either. This SCLC spreads very VERY fast. I have been looking at going somewhere else for other opinions, I'm looking at the Cancer Treatment Center of America located up near Chicago,IL, actually in Zion,IL. Do any of you know this place? Had treatment there? Know anything about this place? I'm also looking for any other info that any of you may have that I could try. I'm willing to do about anything and go anywhere it takes to get this poison out of me. I'm going to beat this, I know I am, I just need to be going in the right direction, I feel like I'm spinning in circles here and don't know which path to get on to end this nightmare. Gotta run for now, but thank you for letting me vent a little. Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted February 14, 2006 Share Posted February 14, 2006 Warren,welcome to our support family.You will find many knowing and caring people here.I think there were a few members treated at cancer center you mentioned.Hope they will contact you. It is my belief that surgery is best,then radiation with chemo(they work togrther),then chemo.All of them can do a lot of damage to the body but when they work it is worth while.It sometimes takes a lot of tenacity to find the right chemo. Hope your onc gets the right one quickly for you and you are able to tolerate it. Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted February 14, 2006 Share Posted February 14, 2006 Welcome Warren, Glad you found us. Lots of good folks with good information, sharing and caring. Stay with us. Rich Quote Link to comment Share on other sites More sharing options...
ginnyde Posted February 14, 2006 Share Posted February 14, 2006 Warren, sure wish I had some advise for you other than just a warm welcome to the best site for support and information. We have had people treated at CCA's and I am sure they will respond. Again, welcome. Quote Link to comment Share on other sites More sharing options...
sharyn Posted February 14, 2006 Share Posted February 14, 2006 Warren, No advice right now, just a welcome to these boards... the help and guidance you will receive is immense!!! I would have been lost without these fine people. Sharon Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted February 14, 2006 Share Posted February 14, 2006 I had Cisplatin and Etopside given together at three week intervals; also had twice a day radiation for 16 days. Yes, the radiation was tough towards the end eating became very difficult. But I feel that radiation with sclc has successful results. I would get a second opinion from another oncologist. I have seen advertisements for CCA but don't have any first hand experience. Here on the board are many SCLC surviviors. Please look under the SCLC section to gather some hope. There are many of us doing well. You will too. Please let us know how you're doing. Joanie ((())) Quote Link to comment Share on other sites More sharing options...
Tarheeldad Posted February 15, 2006 Author Share Posted February 15, 2006 Frank, Rich, Ginny, Sharyn and Joanie, thank you so much for the welcome. Quick response, going to be a real active board here, I can see that already. Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted February 15, 2006 Share Posted February 15, 2006 Hi Warren- You can read what chemo and treatments I have had below. I definitely would be getting a second opinion. Some of the things you have described don't add up. Esp. for someone with sclc that has spread. The cancer center you are talking about is good as far as I know. I had a friend with colon ca that had spread to liver and lung and she went to one of them out in OK and loved it. She has since passed. I am glad you found your way here. Check in often, Cindy Quote Link to comment Share on other sites More sharing options...
Don Posted February 15, 2006 Share Posted February 15, 2006 Hello Warren, You need to tell us what types of chemo you have had, what chemo you are on now, how many treatments of each. Will be alot easier to find you some answers then. I had etoposide with carboplatin for 6 sessions and 15 days radiation to chest at same time 2xday. about 6 months later I had topoteacan for about 5 months. Gammaknife for brain tumor Have been cancer free for over 2 years. God Bless Don Quote Link to comment Share on other sites More sharing options...
Tarheeldad Posted February 15, 2006 Author Share Posted February 15, 2006 I forgot to mention that I did get a second opinion right after the radiation. The Dr from Winston-Salem consulted with my Oncon, and they started me on a 3rd type of Chemo. He also told me that as early as my cancer was caught, that he felt I probably could have whipped it, but would not have told me that before treatments. After 2 treatments, it was determined that I was alergic to this type, and they put me on a 4th kind. This is the one that I get once every 3 weeks, and I have had 1 treatment so far---number 2 is coming up this Thur. Quote Link to comment Share on other sites More sharing options...
Nancy B Posted February 15, 2006 Share Posted February 15, 2006 Hi Warren, welcome. I don't have any answers for you but I am sure someone on here will. I have had both NSCLC and SCLC but was able to have surgeries for both of them, then chemo and brain radiation. Just be sure that you are comfortable with your doctors, get 2nd, 3rd and 4th opinions if you need to. Sounds like you are a fighter, keep up the good work and the good attitude. Let us know what we can do to help. Hugs, Nancy B Quote Link to comment Share on other sites More sharing options...
Geri Posted February 15, 2006 Share Posted February 15, 2006 I too, am a sclc survivor. My original tx was carboplatin/VP16 and radiation, I was switched to Cisplatin/VP16 when I developed allergies. The timing for my chemo was three days on, 3 weeks off. My understanding of the timing is to let your blood counts stablize and that the chemo does go on working it's magic. I was told it can take up to a year to clear from your system after tx have finished so I don't think you should worry too much about the 3 week break. We continue to glow in the dark for a while!! Good luck, hoping for a speedy resolution to the chemo problem. Geri Quote Link to comment Share on other sites More sharing options...
Don Wood Posted February 15, 2006 Share Posted February 15, 2006 Hi, Warren, and welcome here. Glad you found us. I am suspicious of any onc, or doc for that matter, who says outright they can "cure" you of lung cancer. I believe that onc did you a disservice. But I would not dwell on what might have been and look forward to treatments that may help you now. Good luck. Don Quote Link to comment Share on other sites More sharing options...
Ry Posted February 15, 2006 Share Posted February 15, 2006 Welcome to the site. There are individuals here that have gone to the Cancer Treatment Center of America and posted very good things. Good luck to you in your fight. Quote Link to comment Share on other sites More sharing options...
Carleen Posted February 15, 2006 Share Posted February 15, 2006 Welcome Warren, I am so sorry you are going through this. My husband and I went to the Cancer Treatment Centers in Zion for a consultation. Unfortunately when we went Keith was in the middle of a chemo cycle, and they wanted him to come back when he had a current CT scan so they could start from a clean point. We never went back. Keith is very fast to judge, and he immediately didn't like the doctor who saw us. He was sort of short worded and distant. Plus he came into the room wearing leather pants and a white button down shirt with the first few buttons undone. We couldn't help laughing about it afterward, as if he was trying to pick some chicks up in the office, or maybe he was out all night at the clubs and came to work straight from the bars. But once Keith gets a bad impression, he is very stubborn and will not reconsider. On the otherhand, I have heard good things about them from other people. We went to the Mayo Clinic in Rochester MN for our second opinion, and there the determined that he really didn't have Small Cell, but Atypical Carcinoma. It really explains a lot since Small Cell was suppose to react well to chemo, but Keith did have any great responses. Atypical is still aggressive, but not a great reactor to chemo. Keith always had his best responses to radiation. I wish you the best in finding the answers to your questions, and you and your family will be in my prayers. Carleen Quote Link to comment Share on other sites More sharing options...
Tarheeldad Posted February 16, 2006 Author Share Posted February 16, 2006 It is very comforting to know how many people out there care and offer such support to a total stranger. I thank you for myself and for, I'm sure the hundreds if not thousands of other people you have done this for. I have received besides here on the board, E-mails also that have been very helpful. I'm gonna beat this, I know I am. Just have to find the right direction to head, and then go full bore. I will post my history here and soon as I get a copy of all my info. again. Something I haven't mentioned to you yet is that our house burned Nov. 2, 2005. Lots of damage. Everything that wasn't destroyed by the fire itself was damaged by smoke and water damage. My wife and I are self-employed working out of our house and all our computers were damaged or destroyed and all my Cancer treatment info was recorded on them, so one of the nurses in my oncon office is making me a timeline list again and I will post here when I get it. With all that has happened I can't keep that stuff straight in my mind. Right now my wife and I had to park one of those contruction trailers, you know the kind the ones you see at road building sites on highways. Well, anyway we have that parked outside the front door of our house and are working from there now while we are rebuilding the house. These contractors we have are great, they are about halfway done. Hopefully we can be back in our home by the middle of April. Again, thank you all so much, and if anyone has more info for me please post or E-mail. Warren Quote Link to comment Share on other sites More sharing options...
MilliBr1 Posted February 16, 2006 Share Posted February 16, 2006 Welcome to the board! Quote Link to comment Share on other sites More sharing options...
Sheri Posted February 16, 2006 Share Posted February 16, 2006 Hi Warren, welcome to the board. Wow, you've had a rough year!. What doesn't kill us makes us stonger, right? Sorry, it's been so rough, but you do seem like a determined individual and you have the mindset to do whatever it takes. I've obsessively researched SCLC and treatment options since my Dad, my hero, was diagnosed. Once you can identify what chemo regimen you have tried, we can get a better understanding of what you're up against and what you may yet have to try. If possible, track down those records, document them in your profile (you can start one by clicking on "my profile" in the upper right hand corner of this page) and we may be able to identify chemo others have tried with success, that you can discuss with your oncologist. From your post, I can't decifer if you are dealing with a recurrence or a spread from the initial primary. Normally SCLC isn't surgically removed because once it is presented, it's assumed by the medical community that it's hiding elsewhere and a systemic approach is taken. There is a board member here "Schmaydee"(who we don't hear enough from ) who had a recurrence and is having success with a clinical trial. I'm excited to hear about his news when it becomes available and I've also read about other clinical trials that may keep this beast at bay. Give us as much info as possible regarding the chemo you have tried and we'll offer any information we have that can help. Good luck, determination is half the battle. Quote Link to comment Share on other sites More sharing options...
Tarheeldad Posted February 22, 2006 Author Share Posted February 22, 2006 Hey Guys, Well I've updated my profile since I was last here and reading that you can see why I've been a little busy lately. Time to go for another Evaluation got a lot of positive responses from some of you great folks here about the Cancer Treatment Centers of America. So my wife and I will be heading up there on the 7th of March for 4 or 5 days of evaluation. Wish me good luck guys. Thank you again for your support, it really does make a difference. Warren Quote Link to comment Share on other sites More sharing options...
J.C. Posted February 22, 2006 Share Posted February 22, 2006 Warren, All I can offer is a warm welcome to this board. You will find a lot of knowledgeble people and many of your questions could be answered by them. Good luck in all the treatments and keep us posted, please. Jackie Quote Link to comment Share on other sites More sharing options...
dchurchi Posted February 22, 2006 Share Posted February 22, 2006 Warren, Sorry you need us, but glad you found us. I love your fighting attitude it brings strength and hope. My husband had a rough 1st year, but is doing fairly well right now. Prayers for you and your family, let us know how the appointment in march goes. Quote Link to comment Share on other sites More sharing options...
Carleen Posted February 22, 2006 Share Posted February 22, 2006 Warren, It was great talking to you the other day, and I am so pleased that you are going to the Cancer Treatment Center. I'm not sure what days you are going to be there, but I would love to meet up with you while you are in my neck of the woods. I could take you and your wife out to dinner any evening you have available, or maybe lunch if you are still in town on Saturday. I get out of work at 4:00 most weekdays, and I could be in the Zion area by 5:30. This is also an open invite to any of you out there in the Chicago north eastern IL area. I absolutely would love to meet some of the wonderful people here that I know and love so well. This is just a thought, and the offer is out there if you are interested. I can also understand if your schedule is pretty tight, so whatever works out will be fine with me. Much love to you and your family, and I will be praying that all goes well. Quote Link to comment Share on other sites More sharing options...
ErinC1973 Posted February 22, 2006 Share Posted February 22, 2006 Warren, I wanted to tell you that my mom went to CTCA and we as a family just loved it. My stepdad had stage IIIB LC in 1999 and was treated conventionally, I felt as though it was like any oncologist's office where they would look at you and think, "I'll treat you, but we know what's going to happen statistically to you." CTCA is NOT like this at all--you are treated like an individual in every way, shape and form. When you go for your three-day eval, trust me, like my mom, you will go out of there thinking, "I am ready to fight this." IT is nothing like you've ever experienced; doctors and naturopaths working side-by-side and everyone encourages you and is so wonderful, right down to the hotel you stay in. We roomed at the IL Beach resort and it was fantastic. Any of these places will give you a substantial discount during your stay, and they had a fabulous restaurant which had a separate menu for the patients--very health-friendly and FREE. We live in the area; my mom went for chemo once a month and stayed in the hospital, but she had to be dialyzed afterwards and was also handicapped. You will have the freedom to come and go as you please there. They have a TONS of workshops, outings, and seminars to attend every day. I always thought it amazing that as many people that are involved in your care, you ALWAYS see the same people each time you go. My mom and I saw a psychologist, both together and separately, while we were there, and got to be great friends with her. Her name is Margaret Norton. You will meet with a naturopath, if you choose, plus spiritual care, a nutritionist, and pain management. We had a day-long appt with the pain management nurse alone to find exactly the right combination of meds, because they want you to be ABSOLUTELY pain free, no exceptions. Someone said they got a negative impression about one of the docs there--I know exactly who they are speaking of, he is an onco surgeon, and we had a few meetings with him and thought he was so sweet. He was very interested in all aspects of my mom's life and my mom actually LOVED the way he dressed--we all need a little humor at times like these. Your schedule will be packed while you're there from morning till afternoon. If you do have time, there is a huge outlet mall in Gurnee called Gurnee Mills. Across the street is Great America, a HUGE theme park, but it's closed now. Aside from that, I always told people there is so much to do around there if you have kids or grandkids, you'd never get bored. We became rather tour guides for the area, because you will meet people from all over the country there. You'll be in a small group which you will become quite attached to. All in all, when my mom was diagnosed, I pulled her out of the local hospital and told her, "you're going to CTCA, no ifs ands or buts." During the whole summer and fall when she was feeling good last year, each month she went she said she almost felt like she was going on vacation--the food alone was something she REALLY looked forward to. And I always looked forward to picking her up each time. We did have a lot of good bonding times there, courtesy of our therapist! It can be scary going to a place like this, so far away from home, but they do make it very inviting and special. My mom passed away 2 weeks ago. We requested donations to CTCA, and we will be taking them along with some other things there soon. I am delivering a baby next week, but as soon as I get back on my feet this is a priority, so I can visit with everyone who made my mom's treatment time as bearable as possible. If you need anything while you are here, just let me know. We obviously know quite a bit about the facility and area. I realize I have rambled on incessantly, but I want to applaud you on your choice of places for treatment, because I do believe with all my heart that attitude is everything, and she went away from there in the very beginning with such a strong sense of determination that she had pretty much nothing but good days from then on--they all made sure of it, and we as a family determined to help whatever way we could. My amazing mom lived with us, and having her here and being able to be such an integral part of her treatment was an honor to us. Good luck to you. Quote Link to comment Share on other sites More sharing options...
Tarheeldad Posted February 22, 2006 Author Share Posted February 22, 2006 Hey Carleen & Erin, GREAT to hear from you again. My wife and I are flying into Chicago on 3/7 in the evening, from what they tell me they will be evaluating me for 3 - 5 days there in Zion. I'm getting a current CAT scan done on the 6th so I can bring that with me. Read what Erin wrote below your post, that sounds encouraging to me. Getting excited here again. I wanna kick this thing in the butt BAD, just want to find the right Ammo to aim at it. I can put up with anything it wants to throw at me just give me a weapon to fight back with. Donna (my wife) and I would love to meet you guys while we are there, lunch, dinner sounds great to me. Erin, would also love to meet you as well. Your words about the CTCA up there sounds great, looking forward to meeting these people. We are staying over there at the beach resort also, during the evaluation period. Love to you all, and keep up this good work, so glad I found all of you. Quote Link to comment Share on other sites More sharing options...
Maryanne Posted February 22, 2006 Share Posted February 22, 2006 Hi Warren I just want to welcome you to our family. See all you had to do is put a question and walla...look at all the positive responses you got. Very encouraging news from Erin as she definitely has put positive thoughts about the center. It sounds wonderful and a very positive experience. And an invitation from Carleen, what more can you ask for? So sorry about the fire in your house.. you certainly have a load on your shoulders. That must have been devastating, but thank G-d no one got hurt. You deserve a change of luck now. Keep that positive attitude up as that is half the battle. Maryanne Quote Link to comment Share on other sites More sharing options...
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