Susan L Posted March 19, 2008 Share Posted March 19, 2008 Hi. I was diagnosed with Stage IV NSCLC on January 2. I had a horrible time with medical care and basically diagnosed myself through the internet. It's a very long story that I'd soon forget, but believe because of this, my care was delayed. When I finally was able to get decent medical care, I started chemo on February 5. I started with Taxol, Carboplatin and Avastin. Unfortunately, during my second chemo session I had a reaction to the Taxol, which had to be stopped. Yesterday I had chemo again and this time instead of Taxol, I had Taxotere, Carboplatin and Avastin. I get my first CT scan on Monday to see if the chemo has been working. So, in a nutshell, this is my introduction. I look forward to participating on this board. Susan L Quote Link to comment Share on other sites More sharing options...
Patti B Posted March 19, 2008 Share Posted March 19, 2008 Hi Susan- Welcome to the board!!! You sound like me - Stage IV starting out with Taxol, Carbo and Avastin. I also had a reaction to Taxol on the second infusion and was changed to Taxotere with no problems. My first scan showed significant shrinkage and after 6 cycles I went on Avastin only for 7 months. I am now on Alimta for several months and doing good!! I am 18 months out from diagnosis. We all know how scared you are right now - the beginning is difficult. But it does get better, so hang in there. As you progress through the boards here, read some of the profiles. You will find some pretty amazing stories from survivors here - some have been doing well and are YEARS since diagnosis - and yes, even some Stage IV!!!!! Please let us know what we can do for you - ask any questions you want - believe me, there is someone here who can answer it. Hoping you success in your chemos - please keep us updated on your progress and let us know how your scan goes! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Susan L Posted March 19, 2008 Author Share Posted March 19, 2008 By reading your profile, you do sound exactly like me first. I had the same problems with Neulasta also. I didn't have to get the shot last time since I couldn't get the Taxol (same as you - reaction after three minutes), but I did have the shot today. I read somewhere where antihistimines, specifically hydroximine (or something like that) will help with bone pain and I happened to have some for some hives I had not too long ago, so I took one on Monday, yesterday, and I plan on taking one today and tomorrow (at bedtime) to see if that helps. I hope it does, because like you, last time the pain was unbearable! Thank you for posting. Your bio is very encouraging. I'll let you know how the CT scan goes and I hope you will keep me posted on your journey. Susan L Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted March 19, 2008 Share Posted March 19, 2008 Welcome Susan, You are at the right place, many here to offer caring, sharing and support plus stories of inspiration and hope. The journey at the beginning can be overwhelming and a lot to take in but over time things will get better. One can live with lung cancer and still have a life. Stay focused/positive and be pro-active. Research, research and more research-- KNOW LEDGE is the key. Stay with us and keep us posted. Prayers for the best and looking forward to hearing more about you. Rich Quote Link to comment Share on other sites More sharing options...
Susan L Posted March 19, 2008 Author Share Posted March 19, 2008 Hi Rich: You have gone through so much and you are still so positive. You are an inspiration. Thank you for the post. I am actually taking it pretty well and stay positive 99% of the time. How do you create the "journal" you have at the bottom of your post? I'd like to try to do the same. Thanks again. Good luck to you and you will be in my thoughts. Susan L Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted March 19, 2008 Share Posted March 19, 2008 Hi Susan, 1) At the top of the page click on My Profile. 2) Then scroll down to where it says Signature: This is a block of text that can be added to posts you make. There is a 9999 character limit 3) Type in (the box) what you want then scroll down to the bottom of the page and click on Submit. Hope this helps. Rich Quote Link to comment Share on other sites More sharing options...
Susan L Posted March 19, 2008 Author Share Posted March 19, 2008 Thanks Rich - got it. I appreciate your help. Quote Link to comment Share on other sites More sharing options...
recce101 Posted March 20, 2008 Share Posted March 20, 2008 Hi, Susan, welcome to the LCSC! I'm not quite as much of a carbon copy as Patti B, but there are some similarities. I stuck with Taxol for all 6 cycles of the triple-threat cocktail, then was on Avastin alone for another 8 months, now on Tarceva since October 2007. I'm actually in better condition than before my diagnosis, so no complaints there. I see heartburn is giving you a major problem. Did it just start when you began the chemo? There's probably no question that the chemo (probably the Taxol/Taxotere part) is contributing to that, but there may be other triggers you've had all along that just didn't manifest until the chemo pushed everything over the line. My heartburn started gradually, not suddenly as I gather yours did, and increased steadily until I simply had to do something about it. Some time back I had already reduced my caffeine intake to one cup of coffee in the morning, and since caffeine is a known heartburn trigger I hoped going all the way to zero would do the trick. Unfortunately it didn't, but it did have the unexpected benefit of ending the mild but annoying headaches I've had one or two days a week for at least 50 years. So I asked our family physician for his thoughts, and he said that among his patients the two main heartburn triggers are chocolate and tomatoes. I'm not much of a chocolate eater, but I do love tomatoes (cooked and uncooked), so eliminating them from my diet was asking a lot. But I did it, and bingo, no heartburn. I just finished my McDonald's caesar chicken salad, and it's painful to have to leave those four beautiful cherry tomatoes on the bottom of the dish, but not as painful as the alternative! Good luck with finding and eliminating some of your non-chemo triggers. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
beatlemike Posted March 20, 2008 Share Posted March 20, 2008 Hi Susan and welcome.You sound like a positive person and Im sure this will help you thru your treatments.Prayer said that your scan Monday will show the chemo is working. Quote Link to comment Share on other sites More sharing options...
Connie B Posted March 20, 2008 Share Posted March 20, 2008 Hi Susan and Welcome to LCSC. As you can see we have a great group of people here. I'm sorry you have the need to join us, but I am glad we are here for you. I too am adding an extra prayer for you that your scan will be extra good news for you on Monday. Keep us posted. I'll be looking for your next message regarding your scan in the GOOD NEWS Forum. Quote Link to comment Share on other sites More sharing options...
SandraL Posted March 20, 2008 Share Posted March 20, 2008 Hi Susan and welcome. I can't believe you diagnosed yourself. I knew I was in big trouble long before I was formally diagnosed as well. It seems the medical system can be hard to get into. But once you are in, you are in and the help can begin. There are lots of inspirational stories and great support here. Stay positive, you sound like you are doing great so far. Quote Link to comment Share on other sites More sharing options...
Shelley (MLC) Posted March 20, 2008 Share Posted March 20, 2008 Hi Susan and welcome! (love your picture) There are so many wonderful people here that can help guide you through this scary and very confusing time. I'm so sorry that you didn't receive a diagnosis as early as was possible...unfortunately, this seems to happen quite often. I wish you the best with your treatment....You CAN beat this! Shelley Quote Link to comment Share on other sites More sharing options...
Kasey Posted March 20, 2008 Share Posted March 20, 2008 Welcome to the group, Susan. You've come a long way in a short time.....from dx in January to tx. It took me MONTHS to get that far. I, too, must credit the internet for where I am today. This site, in fact, gave me the info I needed to get where I needed to be to get the tx I needed to get!!! Advocacy on our own behalf is so vital. So is remaining vigilant once things get underway. Hopefully you will find the support you need to help along this very bumpy ride we are all on. None of planned on buying the ticket........so guess we are getting what could be called a 'free' ride. It is certainly one I could do without! Looking forward to hearing from you. Folks here are just awesome! Kasey Quote Link to comment Share on other sites More sharing options...
bikergirl Posted March 20, 2008 Share Posted March 20, 2008 Welcome Susan, I too am new to this site but fing it very comforting. I was dx with IV stage NSCLC last October. Had a bad cough that wouldn't go away for 3 months before that but was told I was having severe allergy attack..sure. I had the same cocktail of Taxol/Carbo/Avastin for 4 cycles on a clinical study for Sutent. Fortunately I didn't get the Sutent since they have stopped the study because of the severe side effects. I am not on Avastin every 3 weeks for 8 cycles and Zometa every 6 weeks for my bone mets. The pain I had during my treatments which were exactly like yours were from the Taxol not the neulasta (sp). They actually occured before I even took the Neulasta. Believe it does get better. I felt stronger and had more energy about a week afer each treatment. Keep positive and it will beat this horrible disease! "Susan L"]Hi. I was diagnosed with Stage IV NSCLC on January 2. I had a horrible time with medical care and basically diagnosed myself through the internet. It's a very long story that I'd soon forget, but believe because of this, my care was delayed. When I finally was able to get decent medical care, I started chemo on February 5. I started with Taxol, Carboplatin and Avastin. Unfortunately, during my second chemo session I had a reaction to the Taxol, which had to be stopped. Yesterday I had chemo again and this time instead of Taxol, I had Taxotere, Carboplatin and Avastin. I get my first CT scan on Monday to see if the chemo has been working. So, in a nutshell, this is my introduction. I look forward to participating on this board. Susan L Quote Link to comment Share on other sites More sharing options...
SusanK Posted March 20, 2008 Share Posted March 20, 2008 Happy to see you again . I don't think I commented on your delayed diagnosis before, but my experience, though different, included about a 6 month delay that may have been the difference between stage III and IV. It's known that never-smokers get lung cancer, and long-time ex-smokers (like me) are still at elevated risk, but unfortunately, that hasn't become common knowledge, even for doctors. My PCP at the time was mighty surprised when he ordered an Xray the second time I asked him about a strange cough I had, and something looking a lot like a tumor was on it. Maybe it didn't make any difference - I'll never know. Anyway, I hope that your treatment is going better this time, and that you do really well. Susan Quote Link to comment Share on other sites More sharing options...
Wendy Posted March 20, 2008 Share Posted March 20, 2008 Hi Susan, It is good to hear that you were persistent and finally found out what was going on with your health. Hang in there, you have a whole lot of people adding you to their prayers. Wendy Quote Link to comment Share on other sites More sharing options...
Meadow Posted March 27, 2008 Share Posted March 27, 2008 Hi Susan We made it. I think we will be happy here. Fondly, Your friend Linda Quote Link to comment Share on other sites More sharing options...
Susan L Posted March 27, 2008 Author Share Posted March 27, 2008 Hi Linda. Yes we did. Hopefully we can call this home! Have a good day. Susan Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.