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I think the PCI has me screwed up


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....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

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There was a post here a week or so ago, from a member who had PCI a year ago...and hasn't posted in all that time. She felt the PCI really knocked her socks off.

I've been SO tired lately, if I sit down, I fall asleep. I did have a tummy virus and then bloodwork showed my thyroid is off....I'm hyper. But I also think it's possible that the long term effects of PCI can be just that.....LONG TERM!

As for the steroids.....I am on 5 mgs. of prednisone anyway...and I think it probably helps. I'll be weaning down 1 mg. per month....so we'll see how it goes...but my last PCI tx was Nov. 17th.

Hope you keep feeling better, schmaydee. If it takes staying on the decadron a bit longer...then so be it. Better than upchuckin' lunch...don't you think?

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I have mild nausea now and then, and didn't take the steroids at all. Go figure. It isn't really "nausea" though -- more like mild indigestion now and then. And not at all like when I had the esophagitis from chest radiation. I read a post by Don & Lucie once where he suggested eating small meals several times a day rather than 3 a day, and I've tried that -- it helps.

I think you probably want to press your docs into looking at this closely though, as I have NOT been as sick as you through this. All I've needed about twice so far is a little Mylanta, and I eat raw baby carrots like they were candy, and that helps. Of course, popsicles are always at the ready!

The Radiation Oncologist tried to tell me the PCI didn't cause this, but I've since found that brain swelling causes nausea, and since PCI causes some brain swelling, it makes sense that PCI is at least a contributing factor, if not the cause.

I really hope you get this nipped in the bud, and fast. I'm sure you are way tired of feeling so bad.


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Well, maybe not "gone wrong," but when you're sending radiation into the brain, there have to be side effects, no? You had more than I did too - I only had 12 treatments. About the time the side effects were beginning, they stopped, so I had time to regroup before experiencing anything drastic.

Whatever it is, I hope they get on top of it soon.


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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

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Well, radiation oncologists aren't always so forthcoming about such things. They like to think that chemo causes all the problems rather than radiation. As if.

Maybe you should see your PCP or oncologist about that - someone who will at least try to figure it out rather than just put you off. The one good thing about having so danged many docs sometimes is having more than one to call when something like this happens!

Let us know what happens, ok?


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...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.......


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You could be one of those "special people" like me where your going to get side affects before anyone else does. Although I have not had PCI, when I had radiation I had side affects the first week (with my throat) and everyone kept saying that it didn't start till week 3 or 4.

My rad oncologist has since admitted that I'm a special person and she has learned a lot from treating me. She also said that she is using me as an example when explaining side affects and problems that radiation can cause. Gee I'm lucky!

Good luck getting things under control! Still like your picture!!!! :D

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Dear S,

This is a bummer! It's certainly no fun having this problem, but I am glad the steroids are helping you to feel better.

I think a lot of times the docs just don't know for sure what is causing something, and the best they can do is try to get rid of it.

You've probably heard my story about my husband running a 101+ fever for three weeks and after antibiotics and everything else, they put him in the hospital, did blood cultures, etc. and sent him home 3 days later. About 3 or 4 days after his release, the fever suddenly stopped and it never came back.

They never did figure out what was causing the fever. This might be the case here, too, with your nausea. I'm just hoping it goes away soon - very soon!



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I just saw this, and it caught my eye, because Dave is really struggling now after getting his head zapped yet again with the sinus bonkitis mets - he's having alot of pain in his sinus still.

Hey, Schmaydee - Dave had an EXCRUIATING headache after the first day of PCI (September 2003). It was brain swelling immediately. he took decadron for it. he had the full 15 days of PCI and he felt TERRIBLE until January. He said he felt worse after PCI than he did with chemo and chest radiation combined. and it lasted longer. but for months he couldn't function much at all. I remember going to church without him for a long time.

don't worry, I'm sure the CT scan didn't miss a tumor. this sounds "normal" to me. but I'm not the one going through it, so I hate to sound, well, cavalier.

hang in there, you're going to be OK.


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