jonlee71 Posted September 4, 2007 Share Posted September 4, 2007 I've been told that my sclc is back. Last summer I had the cisplatin/etopiside and radiation series of treatment to include pci. At the time they said they thought there was no living cancer in my body....guess times change. I am trying to find what has worked for people here who had a recurrence. I am also wondering if there is anyway of getting current information about trials. For example, if a trial has been ongoing for a while is there anyway of finding out how successful it has/is been/being? Without this info I feel at a loss as to how to choose one. What guidelines have y'all used to help choose a trial???? Thank you for any help. Jon Woodard Quote Link to comment Share on other sites More sharing options...
laban Posted September 4, 2007 Share Posted September 4, 2007 Jon, So sorry to hear about your recurrence. I don't have any information on trials but you might benefit from asking Dr West in th Q&A section of Onctalk.com He will give you the best information if he has it. Blessings to you. I hate your news is of recurrence but hang in there, the fight isn't over yet. Quote Link to comment Share on other sites More sharing options...
J.C. Posted September 5, 2007 Share Posted September 5, 2007 Jon, Somebody may post with trials and also with their story. Stay around and you may get many answers Jackie Quote Link to comment Share on other sites More sharing options...
teriw Posted September 5, 2007 Share Posted September 5, 2007 Jon, I'm so sorry to hear your news. If your cancer has been gone for a year, I think sometimes they treat it again with first line chemo (perhaps a different combo than the first time). The typical standard second line is Topotecan. Here is the National Cancer Institute web site, where you can search for trials: http://www.cancer.gov/clinicaltrials Also, if you get on the web sites for the university hospitals close to your area, they typically have their own trial listings also. Stay strong. You beat it once, you can beat it again. Quote Link to comment Share on other sites More sharing options...
ztweb Posted September 5, 2007 Share Posted September 5, 2007 OH Jon. I am so sorry. This sucks. I am so proud of your fighting spirit though, and there ARE people who work through a recurrence...stay strong and know we are here...someone will post with amazing news for you soon! Jen Quote Link to comment Share on other sites More sharing options...
ztweb Posted September 5, 2007 Share Posted September 5, 2007 Jon, I saw this in another posting...dont' know if it replies, but it is worth looking at... Picoplatin Trial Demonstrates Survival Benefit in SCLC This was based on those who had recurred within 6 months or so...does that apply? You can read the whole article in SCLC. Jen Quote Link to comment Share on other sites More sharing options...
Larry Posted September 5, 2007 Share Posted September 5, 2007 Jon hi and sorry your having this terrible battle on your hand's and sadly i have no answer's. But i just recently met a woman whose Mother has SCLC and i understand a never ending optomistic out look. Anyway she was as i understand it stage 4(extensive) when sclc was found and was given a very limited time to live.I believe she had a reoccurance and even her family was getting ready for the end as she looked so terrible. Now she look's and feel's 100% better and has started to put weight on, in fact 10 pound's.She is now alive after 2 year's since being diagnosed, so the point i'm saying is do not give up and go Check out Cindy RN's sclc history she's had 2 reoccurances.... Quote Link to comment Share on other sites More sharing options...
jonlee71 Posted September 6, 2007 Author Share Posted September 6, 2007 Thank you all for the words of encouragement. As it stands I plan on getting information from my oncologist (away at a conference this week), UC Davis as they have a few trials, and Sloane Kettering as they also have several ongoing trials. These are all places that I can relatively easily visit, but if anyone thinks there is another place I should look at please let me know. Again, thank you for the kind words. Jon Quote Link to comment Share on other sites More sharing options...
Kasey Posted September 6, 2007 Share Posted September 6, 2007 Hi Jon, Although I cannot offer anything informative about sclc, I hope it helps knowing that folks can relate to all the emotions that come along with lc. You better believe I've run the gamut. So I just want to offer my support along with the hope that you continue to have a great game plan. Many sclc folks are here and surviving even after recurrence. Kasey Quote Link to comment Share on other sites More sharing options...
Nova Posted September 10, 2007 Share Posted September 10, 2007 I'm sorry to hear that you're having to deal with it once again. My husband's tumor has never completely gone away, but when it started to grow a tiny bit more, they put him on Taxol for the chemo medication. He has tolerated it much, much better then the other's they used for his first round. Maybe it's something you can ask your doctor about. It seems there are loads of combinations they can try, so here's hoping they find the perfect one to wipe out that nasty cancer once and for all.... Take care, Nova Quote Link to comment Share on other sites More sharing options...
Don Posted September 10, 2007 Share Posted September 10, 2007 Ask your onc about Topoteacan. It is very effective for SCLC as a 2nd line treatment. Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted September 12, 2007 Share Posted September 12, 2007 It is true I was diag in Feb 2001 and had a reoccurance in Feb 2003. Ist course was cisplatin and camptosar, it worked well. In 2003 I had carboplatin and vp-16. I opted out of the pci, I did not feel comfortable with having it done. As of now I am 4 yrs since last chemo-Good luck! Cindy Quote Link to comment Share on other sites More sharing options...
karenlaureti Posted September 12, 2007 Share Posted September 12, 2007 Hi Jon, My Dad has SCLC and was diagnosed back in November 2006. His has also come back and he is now at John Hopkins in Baltimore to begin a clinical trial. He tried the CPT11 but it is not working. We are hoping from the best for this. There are always alternatives. Stay positive. Quote Link to comment Share on other sites More sharing options...
DrWest Posted September 30, 2007 Share Posted September 30, 2007 Jon, Yes, please let me add how sorry I am that you're facing this again. Topotecan is the best studied of the drugs for recurrent SCLC and is very likely an option you'll hear plenty about. I've written about it in several of my posts. Here's a link to a couple of posts I've done on recurrent SCLC at the OncTalk website: http://onctalk.com/?p=467 http://onctalk.com/?p=204 Good luck with treatment. I hope it's effective and not too rough. -Dr. West Quote Link to comment Share on other sites More sharing options...
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