mariannebreathes Posted January 31, 2011 Share Posted January 31, 2011 Hello everyone, I am so glad my pc still remembered my log in~! Thought I should update my status and see if my profile is still active. Anyhow I,m not sure how long my survivor status is- should the date start when I KNEW I was sick or 4 months later when they finally diagnosed me.......or when I was first labeled as " stable" ? If I go all the way to the beginning of this journey it will be 3 years now! The first year was pretty horrible what I remember of it. Then I spent over 14 months without a recurrence. But the nasty little visitor came back and this time in my adrenal gland. I found out on Christmas eve of 2009 that the smudge on the CT was sclc. The worst part was the uncertainty of my doctors - the arguing over treatments and the progression of my tumor throughout the first half of 2010. I actually told my doctors- I quit, that I didn't want chemo if they thought the treatment wouldn't ultimately help me. When I quit being their "patient" my whole life changed......I did what I never had the guts to do before. I got me a second opinion, and a third and a fourth.......and believe it or not, they surgically REMOVED my adrenal gland at Johns Hopkins and now I am receiving some post op radiation to the area. For the first time ever I was told that I am currently NED!!!!!!!!!! It's still hard to believe but I just keep trying to live every day as if it is my last and loving every minute of it. Sorry for the novel..........love and heartfelt prayers to you all Marianne Quote Link to comment Share on other sites More sharing options...
RandyW Posted January 31, 2011 Share Posted January 31, 2011 got to love that NED every day,every way!!! congrats!!! Quote Link to comment Share on other sites More sharing options...
laban Posted January 31, 2011 Share Posted January 31, 2011 That is awesome news. Thanks for coming back and telling us. Quote Link to comment Share on other sites More sharing options...
Annette Posted January 31, 2011 Share Posted January 31, 2011 What novel - you could have written tons more - good, bad - doesn't matter that's why most of us are here - to give a shoulder, hug, bright smile, cheerful - that's great - any of those things. Of course - your good news helps us all make it through another day. Keep up the good, let us hear from you! Annette Quote Link to comment Share on other sites More sharing options...
jaminkw Posted January 31, 2011 Share Posted January 31, 2011 Wow, Marianne, how awesome is that! I think I know how you felt when it came back after 14 months. I was in remission for a year after my early treatments and thought for sure I'd dodged the bullet. But now you really may have! And congrats for taking charge and finding your way to a place where they did what appears needed to be done. You're three years out and NED. Way to go. Thanks for coming back and sharing. We appreciate it. Judy in KW Quote Link to comment Share on other sites More sharing options...
Bruce u Posted January 31, 2011 Share Posted January 31, 2011 Hey Marianne congratulations !!!! So good to hear from you again and to get the great news. It certainly did pay off getting those other opinions. Quote Link to comment Share on other sites More sharing options...
recce101 Posted January 31, 2011 Share Posted January 31, 2011 It's good to hear froml you, Marianne. Keep those posts coming! Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Libby Posted February 1, 2011 Share Posted February 1, 2011 Congrats on 3 years NED That is something to celebrate. Libby Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted February 1, 2011 Share Posted February 1, 2011 Congrats on NED, Marianne! Quote Link to comment Share on other sites More sharing options...
jstdzy Posted February 7, 2011 Share Posted February 7, 2011 Awesome News!!! Thank you! Dana Quote Link to comment Share on other sites More sharing options...
dianew Posted February 8, 2011 Share Posted February 8, 2011 What could be better - great news! Diane Quote Link to comment Share on other sites More sharing options...
Muriel Posted February 8, 2011 Share Posted February 8, 2011 Congratulations! Good to see you again. Muriel Quote Link to comment Share on other sites More sharing options...
Barbara-won Posted April 18, 2011 Share Posted April 18, 2011 Awesome story!!!! Hope to tell it the same way 3 years from now . I will be 49 next week and was dx sclc mid December 2010, found tumor in upper left lobe, dont remember the exact cm's but it was almost 4"x4". Pet showed light-up at right ovary, needle biopsy from lung tumor showed sclc, doc said no-way ovary would be sclc, said it would skip over everywhere it likes to spread to and go all the way to an ovary. Decided I should have Ovary removed and then start Chemo for sclc. I told Surgeon go ahead and take both ovaries, pathology said it was indeed small cell, go figure!!! So ugly Ovary gone, two days later on January 19, 2011 I was admitted to hospital because tumor in lung was pushing on aorta and superior vaina cava causing me to pass out if I coughed. New CT showed 4"x5" and Chemo was started the next day in the hospital, 4 days later I left feeling alot better, 18 days later xray showed tumor had shrunk alot. Finnished 4th round of Chemo (Carboplatin and Etoposide) on March 24th, Had new PET Scan on April 11th, showed tumor now about 1"x1", doc says 5 or 6 weeks radiation should kill off the rest of this tumor but Pet Scan lit up a Vertebra (T- they are perplexed at how they could have missed it on previous scan but Im wondering if its an injury?? I went back to work about 5 weeks ago and am a custodian (cleaning buildings on University Campus) maybe I slung a few too heavy garbage bags or something?? Not showing mets anywhere else, brain MRI was clear !!! Had MRI w/contrast today on thoracic spine so I hope to have an answer when I see the Radiation Onc. on tuesday afternoon, in the mean time my motto is keep on keep'in on and I will too !!! Absolutely love all the positive stuff im seeing on here, I was really starting to feel kinda lonely in my quest to stay upbeat through this thing and beat it down like it deserves grrrrrr!!! Thank you all for being here for one another and for me!! Barbara-won Quote Link to comment Share on other sites More sharing options...
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