karenwentzel Posted March 15, 2011 Share Posted March 15, 2011 Hello to you all, Man, sure wish I didn't need to be here. How fast our lives can be changed! I was just diagonosed with extensive small cell lung cancer on 3/2/2011. Completed my first round of chemo on 3/5/2011. I am now out of the hospital and at home wondering "what the heck just happened to me?" I wish you all well in our journey(s) through this terrible thing called cancer. Karen Quote Link to comment Share on other sites More sharing options...
ginnyde Posted March 15, 2011 Share Posted March 15, 2011 And Karen we wish you well. I have a dear friend that was dx'd with extensive small cell over 3 years ago. She is not having any treatment right now and has been moved to every 6 month scans. Hope this for you too. Quote Link to comment Share on other sites More sharing options...
karenwentzel Posted March 15, 2011 Author Share Posted March 15, 2011 Hi ginnyde, I cannot tell you how thankful I am to have been directed to this site!!! I was looking online for a glimmer of hope....there wasn't any to be found until here! I am so thankful!!! Karen Quote Link to comment Share on other sites More sharing options...
Annette Posted March 15, 2011 Share Posted March 15, 2011 Statistics are not people - there are a few folks on here that can share their stories with you - you stumbled onto a great place. Supportive people that turn into the best friends people in our situations can lean on "virtually" - just wait til you see how many people offer you help - no matter what is going on you can feel the power of support here. I am wishing you the best as you continue on this journey - glad you found us. Look around - check back often - there is so very much to learn here. Annette Quote Link to comment Share on other sites More sharing options...
jaminkw Posted March 15, 2011 Share Posted March 15, 2011 I am a long term survivor (3+ yrs) of advanced lung cancer. All I can tell you is they are doing a great job of keeping up alive. There appear to be many treatments out there and once you get used to the word "progression," you learn to go with the flow. If you are lucky enough to go into long term remission great, if you're stable great and even if there is progression, they'll put you on another treatment. I'm living a pretty darned good life and have only been off treatment a little more than six months in 3+ years. Keep posting as and offer whatever you want/need. We're here. Judy in KW Quote Link to comment Share on other sites More sharing options...
RandyW Posted March 15, 2011 Share Posted March 15, 2011 welcome and for more inspiration and hope take a look through inspiration and good news forums.. Quote Link to comment Share on other sites More sharing options...
eric byrne Posted March 15, 2011 Share Posted March 15, 2011 Hi Karen, Welcome to SCSC,you couldnt arrive at a better place.Whatever you need we got it here in abundance,knowledge,experience,hope,empathy ,cyber cuddles,more importantly a right good laugh.The buddies here are so supportive and friendly here,dont think I could have coped without KatieBs gang.Casting my mind back I think compartatively speaking,my mind and body were a incoherent jelly ,this dx is going to kill me and in the not too distant future,couldnt get the thought out of my head,yet despite my worst imaginings,nothing happened?I am way past the 2 year prognosis my dim GP offered me,and just to annoy him further I have decided to stay here for at least 20 more years. Read my buddy Robert Lowes story in cancergrace,two months to live in 1993 with SCLC,survived to develope,in 2007,NSCLC,still going strong,and not only the UKs oldest/youngest teenager at 71 years young,but the UKs longest surviving Dual LC survivor.Happy to tell you Robert and I attend the Stobhill Lung Cancer Support Group,here in Glasgow(thats in Bonnie Scotland you know)and we just never stop laughing when we meet.Yes Karen, LC did rain on my life parade,but hey it came with a great big silver lining,its taken me to places I would have never otherwise gone,introduced me to the most wonderful friends you could ever wish to meet,and they are all here just for you.So wipe away the tears,throw your hankie in the bin you wont be needing it again,and smile, things are going to look up from now on, I promise. Some times personally being a Scot, I find your social security infrastructure grating on my nerves which prompts me,into making ill advised remarks like "I hope you are not a fan of Sarah Pallin, are you?" and such like,my apologies in advance for anything politically I allude to, that you may find irretating, I just want to rule the world to make it a better place.Boy, I do go on when I get started? I do hope you will despite my presence,stay around and get to know the other buddies here,who are less barking than me.Ahem, watch out for Becky,thats all I am going to say.God Bless and byee. Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted March 16, 2011 Share Posted March 16, 2011 Welcome, Karen. The responses you've received are right. Many people do much better than the odds they are given, so don't let any doctor put an expiration date on you. Here's hoping your treatments are very successful and that you're posting here a very long time. Quote Link to comment Share on other sites More sharing options...
Outrider1 Posted March 17, 2011 Share Posted March 17, 2011 Karen, I have too have ext-SCLC and am 29 months past last chemo(3 years come this october) and come May 3 years out from dx. I have I have had what the DR. here call a complete response. I have had PCI twice, since the dr. found little lesions in my head...Those lesions turned out to be MS and not cancer. It's amazing to me that I had to have cancer to find out I also had ms. Any way I got 6 months of carboplatin and etoposide once a month. and doing the 3 month scans ever since. If you need to chat, I can usually be found on FB or most often on yahoo messenger. My handle on yahoo messenger is Outrider323. Just add @ yahoo.com to get my e-mail. I am available anytime. Dawn Quote Link to comment Share on other sites More sharing options...
jstdzy Posted March 17, 2011 Share Posted March 17, 2011 Welcome Karen, I had SCLC too. I went on line and read all the stats and just flat scared myself half to deatth! I'm still kicking! So my advice is don't read the stats! Dana Quote Link to comment Share on other sites More sharing options...
karenwentzel Posted March 17, 2011 Author Share Posted March 17, 2011 Well, I had written a reply but it seems to have been lost! I am very happy to meet you all! You all are my glimmer of hope in an otherwise dark time. Last night started losing my hair. I do have a wig, but think I should invest in some nice silk scarves. This AZ heat will probably not feel good with a wig on. I started journaling today. I had to get some of these thoughts, feelings, etc out. I am exhausted now. I look forward to getting to know you all for a LONG time! Karen Quote Link to comment Share on other sites More sharing options...
carolhg Posted March 18, 2011 Share Posted March 18, 2011 Hello Karen and welcome to this site. Though I wish you nor any of us had to be here. This site is invaluable for the support that you need and will receive. Sending positive thoughts your way and adding you to my prayer list. Carol Quote Link to comment Share on other sites More sharing options...
jaminkw Posted March 18, 2011 Share Posted March 18, 2011 Hey Karen, the wig is nice for a special outing but I couldn't handle it on a regular basis. Scarves are nice if you know how to tie them so they stay on. My favorite cover-up was a furry black hat. I'm about to do the hair loss again but this time it will be summer. Think I'll just go with make-up and the bald look. It's not really that bad. Go with whatever works for you. Judy in KW Quote Link to comment Share on other sites More sharing options...
jstdzy Posted March 21, 2011 Share Posted March 21, 2011 Could hardly stand a wig. I had a whole bunch of scarves. One thing really good about losing your hair? It keeps you much cooler! Dana Quote Link to comment Share on other sites More sharing options...
dianew Posted March 21, 2011 Share Posted March 21, 2011 I am a bit late welcoming you, but as I'm sure you can tell by now, you've certainly to the right place for great advice, support, as well as some good laughs. I don't have small cell, but am on my second diagnosis of nsclc - first in 1998 and again 2008. I have been stable since my treatment ended in 2009, and am enjoying life and am planning on enjoying it for a long time to come. I wore my wig twice - couldn't stand it - hot, itchy, and always felt like it was going to pop off somehow and land in the salad. Like Judy, I wore nice soft caps, but would be too warm for AZ of course . . . there are some really beautiful scarves, as well as some cute hats - and some people just go "natural" . While I do prefer hair, I have to admit that once I got used to it, I really did enjoy not having to "do" my hair everyday. Please keep us posted on how you are doing. Diane Quote Link to comment Share on other sites More sharing options...
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