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Posted

Will not make this long but how many people out there with this dreaded desease has had more than one reoccurance???And then how many have had a reoccurance and is doing fine now or at least better???

Posted

Larry,

I am working on my second reoccurance and with Gods help and luck will hit NED again sometimes soon. It is a rough fight, but I am not quite ready to give up yet.

Praying for us all

Betty

Posted

Mine was discovered in Feb 2001 and had chemo thru out the yr. I had NED til Feb 2003 and had chemo and radiation til Aug 2003. I have been NED since. I am working about 10 hrs a week teaching at the local college. So I am doing well at this time.

Cindy

Posted

well, unfortunately Dave is working on his second recurrence - third bout in two years - started out with limited disease, then right at the one year mark of remission he got one met to his right frontal sinus cavity and surrounding bone. After six months of chemo, I mean, as soon as he finished six months of chemo (and radiation) for that (which went into NED) he was diagnosed with mets to his lower spine, pelvic bone and left hip and liver. now we are trying to figure out if he has brain mets or it's "just" radiation damage since theat part of his brain got accidentially zapped twice, once with PCI and then again for the sinus tumor.

I asked the question a few weeks ago, are there any long term survivors out there who had EXTENSIVE disease, so I guess if you start out limited and then it comes back then you're pretty much in the extensive category, so I guess my question included peopole with a recurrence.

Karen

Posted

I'm on my second, wonder if I was ever NED. Went from Stage 3A to Stage 4 in only 60 days (between scans) or 120 between treatments.

Now that I'm at the last stage we're gonna kick some butt and get over this crap!

When I was originally dx (prior to surgery) I was stage 1. So I kinda figure I've had it all in less then a year and on my original anniversary date I'll be NED. Sounds like a plan to me!

Then I can stick my tongue out at everyone and say nanny nanny boo boo....I have done the impossible!

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