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Any long term SCLC LIMITED SURIVORS out there?


toml

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Hello and new to the board.Would love to hear from long term sclc limited survivors.My wife an ex smoker was diagnosed in March 05 sclc limited and started treatments,30 rounds of radiation twice a day for 15 days which was completed in mid May.She is now completing her 5th chemo treatments,Cisplatin and Etoposide.She is handling the treatments well,and has only lost a little weight.A ct scan was done June 23 after the 3rd chemo and showed the fist sized tumor had shrunk by 80?Hopefully at the end of the 6th treatment the tumor will be gone.The doctor had mentioned a radiation treatment to the brain,pci I think it is called,which would prevent tumor from going to the brain.Kind of scary treatment and will have to think about it.Would love to hear from people with similar situations,what you doing to keep this cancer from coming back,and if you changed your lifestyles.Thank you much.Tom and Kathy

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Hi Tom,

There was a posting here a few months back asking for extensive stage survivors. I am posting the link for you. Even though these are extensive stage survivors, there were alot of responses from alot of inspirational folks.

Best wishes for you and Kathy and I look forward to "getting to know" you both better.

Here is the link

http://lchelp.org/community/viewtopic.php?t=14163

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Tom & Kathy - Welcome, although I'm sorry you need to be here. But, you landed in a great place!

I had the PCI done in Dec. 2004, and posted about it every day in the SCLC section. You may be able to drag out those posts. Also, others have posted about their own experiences -- all of them very helpful to me while I was deliberating my own treatment with the docs.

You both have my best wishes.

Di

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Welcome, I am an almost 4 year surivor of limited sclc. I had the usual chemo and chest radiation but chose to forgo the PCI.

The only changes to my lifestyle involved the actual treatments and subsequent lack of energy. Once my energy levels went up my life was back to normal and I have been doing all the usual things.

To be honest the only time I really give much thought to having had cancer (I have never dignifed the word with a capital c) is when I log onto this site and when I am waiting for tests and results (which are now going to be yearly!)

Hopefully the journey will be the same for you and Kathy as it was for me and my family.

Geri

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We have some in our group more than 5 years. As a matter of fact I am going out this evening with Janet, we are going to the wellness event in Minneapolis I posted about. Donna G

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I'm not sure what your definition of long term is but I was diagnosed in January 2002, had the same treatment (including the PCI) that you are having plus an added dose of Comptosar just for good measure. By the end of the lung radiation, Cisplatin and VP-16 treatments and the PCI there was no evidence of my tumor. I think this was probably about 10 months after my initial diagnosis. I have had clean scans ever since (3 1/2 years). I feel great and am completely back to life as I knew it before cancer. E-mail me if you want to - I'm happy to talk about my experience with you. I know that when I was first diagnosed, finding a survivor was the #1 thing on my mind.

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Andrewsmom says: "I know that when I was first diagnosed, finding a survivor was the #1 thing on my mind."

Truer words have never been written. Me too. I knew that there was surely at least ONE person somewhere "out there" who was still around to let all the rest of us know what we could expect. The one thing I took from all the statistics being thrown at me was this -- that even if it is 99% against you statistically, someone has to be in that 1%. I want that to be me. We all know that there isn't anything on earth that is 100%, so if we take ourselves out of the statistics game, we have survival, one day at a time.

I'm about 14 months out from diagnosis now, and the first Oncologist I saw told me 8-10 months. Neener, neener. Of course, he told me other things that turned out to be wrong, so I replaced him. Take that, you cad.

Yes, there are survivors out there -- more than I ever would have thought. Including me. And I'm happy to be included in their numbers for as long as possible.

Di

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Well I am at 4 yrs and 6 months since diagnosis in Feb 2001. I was diag with extensive sclc. Read below to see my treatments. Also I am at the 2 yr mark since the last dose of chemo. I am schedualed for another CT next week and hope to have good results.

Glad you found us, lots of success stories!!!

Love Cindy

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