Request for survival stories

[battleofbrooklyn]

Hi there,

First of all, I just wanted to say I think this is a great site. And I'm hoping a few of you courageous folks can help me out...

My mom was diagnosed with extensive small cell three weeks ago (left lung, chest and liver) and has just had her first round of chemotherapy (etoposide/cisplatin). She's a tough cookie and I'm amazed at and inspired by her attitude.

A few days ago she asked me if I could find some stories about people who had the same diagnosis and achieved long-term survival. She hasn't asked me or the doctors about median survival rates for small-cell, but I'm guessing she would define "long-term" as several years.

She knows she has a rocky road to hoe -- that her cancer is technically incurable and that if the first-line chemo works, it's almost certain to return -- but I keep telling her that someone has to beat the odds.

I think some stories of folks who beat them, too, would go a long way toward reminding her that the fight isn't futile. So if you or someone you know has an inspiring small-cell tale, can you drop an email to Jackie, at my email address (mom has no computer)? It doesn't have to be long -- just positive.

Thanks so much...

Tracy

[Addie]

Hoping our CindyRN sees this...as she was sclc-extensive at dx and that was over four years ago!! ConnieB is a 9 yr. survivor of NON small cell...but she knows of a couple of long term (like 5-6 yrs) small cell survivors from her local cancer group. Jen (jcawork) knows a gentleman who has been around 10 years since his diagnosis!

So...the short answer to your question is that, yes...there are those who survive long term. Most would probably tell you too, to stay positive and NOT to believe the statistics, as they are dismal and outdated.

I was sclc-limited...but mine ended up in my liver and pancreas in Feb. but it is MY INTENTION to be around for a while yet. Second line chemo is working well for me.

This question comes up periodically....usually from new members like yourself...looking for hope or something positive to hang onto. We've all sort of come to accept too...that many long term survivors are out there living their lives and enjoying their long survivorship....they aren't necessarily on message boards!

So while you'll find stories here of those who are beating the odds...there are probably a lot more people that NONE of us hear from because they are too busy enjoying themselves and just LIVING!!

Best wishes to your mom...tell her to stay tough and never give up hope. I'm really convinced that staying positive helps - overall - and it sure makes one's days more pleasant than being stuck in worry.

[Don Wood]

Check the posts under "My Story".

[Connie B]

Dear Tracy,

As Don mentioned please go check out the MY STORY FORUM. That is where we put all our stories of hope and of our journey.

I will add that I have a dear friend that is a 6 year ext. small cell lung cancer survivor. Her cancer had spread to her liver and she is NOW cancer free and doing GREAT! I know of others as well. One had small cell that had spread to her brain, and she was a 5 year survivor when I met her. Please believe us when we tell you this is NOT A DEATH SENTENCE! This can be beat and we are prof!

I'm sure you'll find a lot of support here and information as you venture on. Please give you mom my best and tell her she can beat this crap! I DID!! I'm a 10 year Lung Cancer Survivor and no one thought I would beat it either!

Good luck and God Bless,

Connie

[Cindy RN]

OK---I saw my name mentioned--Addie!

I guess I am a long term survivor. I was diagnosed Feb. 2001 with extensive sclc, went thru about 9 mos of chemo., had a yr. remission, then a new tumor popped up in L lung in Feb. 2003 and I did 6 more months of chemo. Plus radiation that time. My last dose of chemo was Aug. 2003. It is now almost June and then July and then !!!!AUGUST!!!! which will be 2 yrs without chemo. I pray I see that happen.

You can look below and see the chemo agents I have had. I recall the surgeon who did the biopsies saying I might have about 6 mos without treatment and he had seen a few live up to 2 yrs with treatment. HA!!! I keep saying I need to stop in and show him there are some who do well. Maybe nobody has ever gone back to these doom and gloom Drs. and say see--I am living!!

Good luck and please feel free to ask questions.

Love Cindy

[battleofbrooklyn]

Many thanks to those who emailed or posted here. I'm going to print these out tonight and give them to my mom. She had a rough night -- bad mouth sores and a fever from the chemo -- but your stories are just the medicine she needs!

[pamm]

Hello, just wanted to let you know, Brooklyn, that I'm from Jersey and I have extensive small cell lung cancer. It's not pretty, mostly because I feel that it's my fault cuz I smoked for 40 years. Who knew back then and at what cost?? I am doing well, I had 6 months of chemo, I tolerated that well for the most part, and surprise, surprise, I was asked back to work about a month ago. I am so happy with that and also singing with my church choir again yes, I can breathe well enough, and I am a first soprano!!! Anyway, I am doing well for now and will not accept anything different. I am going on vacation at the end of the month to the Jersey shore. I had to convince my husband that it would be good for us to go, my kids think it's great, so what more could I ask for? I will have aweek with my 3 kids, their dad, my brother in law and my mother in law, who is agreat friend, by the way. Oh, dear I am rambling I need to sleep, but I wanted you to know that you need to stay ontop of you diagnosis. Don't let it get you down, at least most of the time, I am not a Pollyanna. Best of everything to you and pls keep intouch. I don't hear from anyone, except Jean and that was just a welcome. I wish otshers would say hello.

Pam