schmaydee

....i feel pretty good now...they want me to take the steroids (low dosage) for a month....maybe that'll be long enough for everything to get worked out...one way or another... .........s

...thats pretty much what i have done... at this point i'm back on the steroids......gonna try 2mg (1/2 pill) a day for 2wks then 2mg every other day for 2wks...... onc-doc seems to be treating it as a "weaning off the steroids" prob.....but i'm not buying that..... i was only on 'em a month and tapered off of them for 3 weeks after that..... ........plus i should have been sickest just as soon as i quit taking the steroids....but i wasnt...... i keep getting sicker the longer i was off of them (i should have felt better as my body started producing the steroids again). i was much more ill a month after i was off of them than the 1st week i was off of them....... .......s

yeah, i talked to the rad-docs nurse..she said i couldnt possibly still be having effects from the pci.....but i'm gonna be hard to convince..... youre not supposed to have any effects for a week or 2 after you start them but i had them immediately (and they were severe).. ....i mean "sometimes" they can make you "permanently stupid" if they can do that no tell'n what else they can do.....my treatments didnt go (@ ALL) like anyone elses did......which is a bit disturbing.... not sure why they just had to give me 19 of 'em either......but i've been sick as crap the last month because of them and i'm not happy about that..... ....s

i have pretty much thought my prob was w/the steroids...but i dont think so anymore. i think its the PCI treatments gone wrong...... .......s

....just got through having a really bad week..... ive had nausea (bad) ever since i tapered off of the steroids (12/03/04 through 12/26/04).....it has gotten worse ever since finally got to where i could eat at all and was constantly throwing up........yesterday the doc said take a couple of decadrons (i did) and this morning i felt fantastic!!!!! all of that is very cool except i had my last pci treatment 12/3/04.....so why should i need steroids at all. the "very first" pci i had made me sick "immediately".....i mean that very night... i'm thinking it musta "cooked" something that makes me feel this way..... and the steroid is just releiving the symptom......or i have brain mets the ct scan didnt see....... any ideas? thanks .....s

fantastic!!!!!! this has been tough on you.. ......the worst should be over.... ....s[/b]

...i'm still here...been real sick until last monday.....nausea..they say its from getting off the steroids....(its takin' a heck of a long time)...still sick but better...cant hardly eat.... good ct scan a week or 2 ago still ned...... .......s

that's absolutely fantastic....if it hasnt got you yet it isnt going to...i've been sicker than crap...cant eat....throwing up... went to the onc/doc today...he said either it is the steroids or the stuff is back....(if its the later there will be some hell raised)....... go for a ct wed...find out thurs .......s

....hey di.. how are you feeling now? ....if you're still "frisky" you have it made (i would think).....hope so.. .....s

..thats good to hear... i think if anybody makes it 2yrs w/o it coming back you pretty much have it licked.... .....s

....to some extent i think the chief determining criterion for a lot of the stats is who's doin' the funding...not so much w/us cause theres not very many of us...and the money potential isnt there ....(like viagra or something) drug corps pay for most of it.... i was up until 5:00am last night.... up @ 9:30am...but i feel pretty good today...after a steroid induced episode of glutony w/christmas candy* and coffee......i'm bouncing off the walls...... and i kinda like it... *people who make that stuff and give it to adults should be made to eat it all themselves.... .......s

many thanks for the public and private posts.... ......s

..not really..(worried) i disagree on the numbers thing......i wanna know the numbers.... their not gonna be good....weve got a pretty bad disease here....i accept that no prob.........some people beat the numbers ....everybody wishes everybody would...there's always hope....regardless of the #'s..... i'm just trying to find out what they are...... just kinda sleepless since NOVEMBER (steroids) and wondering about some stuff.....2 days ago i was 'sposed to "start" feeling better from the pci treatments and from being weined off of the steroids (pci ended 2 weeks ago)...it aint happening... the cancer treatment ended sept 24 and i'm not convinced its gone........all the doc had to go by was a ct done 6 weeks after that.......i guess its enough????.... but i'm wondering why others are getting pet scans and my doc is telling me they dont work for sclc... prbly just sick & tired of being sick & tired ......and everybody here knows what thats like.... ...s

yes, i look at everybody's stuff.....there's not a lot of folks here over 2 years......ofcourse the people that go into remission (and stay that way) might not come back here .... i have all the hope in the world..and a better chance than most....but i wanna know the real numbers .... i think you get what you got (the cancer and what stage)...they do what they can (treatment wise).... and your body does what it can .....then whatever happens happens.... @ this point they say i'm ned or in remission (i guess thats the same thing????)...but i dont know how he can tell w/a just a ct scan...there was still scar tissue (if not cancer) still in there...he xray'd me 6 weeks later and said it wasnt "growing"... seems like they'd biopsy it.....or pet scan....who knows? my onc-doc said that i prbly have a 45% chance for 5yrs after taking the pci.....but he's been way to optimistic before......only thing i'm pretty sure about is NOBODY REALLY KNOWS!!!...i figure 5 yrs is cured..... i see vast differences in the #'s for LS SCLC.......usually 20-25% for 5 years.... ???? you can see who lives and dies here..and what they went (and are still) through....it would be good if there was a list of all of us that had it on it....prbly is but i cant find it...... .....s

..is there a list of survivors w/SCLC? on here? (or anywhere) 2-3yrs or more?..... i found one (kinda) for NSCLC...... but not for SCLC.... what does NED stand for...? Doc has told me they dont do pet scans for SCLC.....but i hear of folks getting them.....i'm 'sposedly in remission maybe thats why.....but i'd kinda like to know if the stuff comes back....... thanks, ..s

...i'm so sorry betty..... .s

...di, .....if you cant find anybody to do it local.....i know people who'll drive down from paducah, ky just to do it for you....of course none of them offered let ME shave THEIR heads.. all of this was at my mom's in ky....(outside on the porch)....a little "retirement/condo" kinda place....every mini-blind in the whole complex seemed to have "a peep-hole" in 'em while this was going on.....(mrs kravitz).... cindy, yeah....'bout the steroids...they put me on decadron....its as bad as the chemo to me....or w/the effects of the pci it was.....i think they give it out too quick sometimes and it can be some BAD stuff (IMO)..... i'm weining off of it now...... ......s ......s

hot....oh yeah.... i might still be a little "hot" (radioactive) from those pci's.....prbly could cook an egg on that old bald head....whew.. ..s

....nothin' brave about me...... i'm just doin' what i can to save my own neck.... besides.... we dont have a lot of choices the way i see it.... "skeered" not to take the treatments (or whatever)..... i've been sicker than crap....but never thought i was in immediate danger of death (wished i was dead a couple of times hehehhe).... not tryin' to bring you down but be prepared to feel like crap....youre 'sposed too "after" you get done w/these (2 weeks) ....hope not..... but dont let it surprise you.... for most folks i dont think its that bad.... you know all of that.... ...youre about 1000% tougher than me... you make it to work .....i'm not doing that.... couldnt.... i think the thing w/pci (for me) is if the stuff comes back i cant beat myself up w/ "oh i wish i had done it"..... ...s

oh this wasnt just 2 pics.....this is just start & finish there's mohawk scalp lock pencil necked geek and more several pics taken during the course of the saving thing...... it was well documented...... ....s

..so do you think that you are "just now" getting over the worst of the fatigue? ...i dont think there's a lot you can do to help get over it....... it just happens when it does..... .....just about everybody similar to me seems to be doing quite a bit better..... i mean there's no way i could be working.....or even driving to work.... weeks before i pronounced ned (what does ned stand for?) i was pretty darned close to being able to get back to work......i felt pretty great...... that made the "knock-down" from the pci (steroids,flu-bug, wateverdidit).....and the recovery time such a drag..... ...s

addie, i see you finished pci ....have you fully healed up from that? now? you know the tired etc... how long did it take? i had 19 of 'em (ending 12/3)....they said it'll be 12/26 before i'm kinda up to speed....what was youre experience?.... thanks, ....s

di, i think you got it made!!!!.... seems like it goes one way or the other.... you either get sick w/in 1-2 of 'em or you dont get sick..... seems like everybody gets the fatigues and stupids...... some more/some less... i didnt tolerate decadron well.... they were giving me 12 mg/day....and i didnt take them RIGHT a couple of times YOU DONT WANT TO DO THAT.... they will make you crazy or worse if you dont take 'em just right..... alice sounds like her deal is the most like mine.... if it was like me once i got on the decadron .. i didnt have any pci probs as much...... but i really felt like crap from the decadron....nooooooo sleeeeeeeeeep....always eating....... hehehehe... .........s

...i dont think most folks feel much of anything until all the treatments are done.... i got sick when i started 'em..... but i dont know what caused it... might just have been a bug..... or my imagination... dunno... my probs started when they hit me w/the decadron....just to make sure it wasnt the brain-frys doing it)...... and steroids are eating my lunch now.... unless you really get to hurting (and hurting baaaaaad) i'd recommend not taking the decadron.... they'll give it to you real (too) quick if you say anything..... i wish i had kept my mouth shut...... .....s