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If the cancer don't get me, the Decadron will!


Addie

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:shock::shock::shock::shock::shock::shock:

Who knew that Decadron pills could be so much worse than Decadron infused? :?

I am working on about 4 hours of sleep over the last two nights. Went to sleep last night at about 11:30, after taking pills and watching tv - including the news. AND I even took a Tylenol Simply Sleep....which Simply Didn't Work!

Woke up at 1:30 and have been dinking around on the computer every since...but for a cup of green tea and a snack of two Hershey's kisses and a big handful of Cheetos. Did it say somewhere in the pharmacy insert that there may be "increased appetite" with Decadron? :roll:

I type at lightning speed, making twice as many errors in half the time. It's sorta like microwave cooking where you can burn twice the food in half the time. :D Still, it fills up these waking hours to have to go back and correct my typos.

I put in a call to the nurses in my onc's office and was told to hang in there and give it another day or two...see if I adjust. They'll have to pull me in on a sled or a gurney when I see the doc on Monday, if I'm still on this stuff, unless I get some sleep.

Well. Hubby says I'm climbing the walls. I can FEEL how wired I am. I am cranky...which is not my normal state of being.

Last night when I got up long before I should have...I spent most of the rest of the night on the sofa, composing (in my head) a nasty letter to the builder of our (Gawd, I hope the sale goes through) house in Arizona. Ground was broken in December of 2003. As of the inspection the beginning of August 2005...the house didn't pass! :shock: A brand new house!!

Wanna know one thing they did which defies logic? They stained all the interior doors in the garage and then LEFT THEM SIT THERE FOR 2-3 MONTHS BEFORE INSTALLING THEM INSIDE THE HOUSE...and as most of you know, temps in Arizona were running around 110-116 degrees. Smart, huh? :roll: They all warped, of course, and wouldn't close properly, as noted by the inspector in all his technical wisdom, and who then refused to pass the house. :x

Meantime the house WAS air conditioned and we have a $500. electric bill for ONE MONTH to prove it. They must have been leaving exterior doors open, hoping enough cool air would get to the un-air conditioned garage to save those doors, perhaps? :?

Of course we are in Connecticut...so it's a little difficult to BE THERE every day to see what this nong-nong builder or his crew are doing. We just get the bills. :roll:

Enough of that...I digressed. Again...thanks to Decadron. I also composed a letter in my head to a "friend" who bailed out on me when I got sick, and to whom - when I run into her - I've been amazingly nice. I've decided making nice, in this particular situation, sucks and is undeserved! I'm going to try to get over it enough to just ignore her from here on out, rather than continuing to be friendly while not effusive.

But in my head last night...I imagined her saying to me, as she always does, "You take good care of yourself"...and me replying..."Well, I have to!! If I was relying on YOU to take care of me, I'd have died ages ago!!" :shock::D

Of course anything I do or don't do, say or don't say these days, seems to be controlled by the Decadron anyway...and NOW I know what some of you have been complaining about.

Holy Crap...the fix is worse than the disease! :shock: How can oral Decadron be so much worse than the infused variety....or have I already asked that question?

It is. That's all I know.

From high atop a Decadron induced Speed Trial...I bring you my fervent hope for all of us that have to take oral Decadron...THAT THEY FIGURE OUT HOW TO FIX THIS STUFF SO IT DOESN'T WIRE US UP LIKE COILED RATTLESNAKES!

Or that every prescription come with a sledge hammer to be applied nightly to the user's forehead.

Or best still...that we DON'T have to take it with Dilantin (for seizures) that PRECLUDES alcohol anymore. A couple of stiff drinks would preclude the need for the sledge hammer...wouldn't it? 8)

I tell ya...I'm not really symptomatic...but having brain tumors and the MEDS they have to give you to treat them...ain't a lot of fun so far, unless you consider the opportunity to mouth off online...mostly a bunch of drivel that just uses up all this energy you have coursing thru your veins...as being a Highlight Of One's Existence!

I don't. Still.....I just mouthed off a bunch of drivel and now YOU are left to read it. Or not. By the time you peek in here...I'll be off on some other Decadron induced "business", no doubt.

Right up until I have to "get up" at 6:30 to be at the hospital just after 8:30 to figure out when they are gonna toast my head.

The sooner the better...cuz eventually I can get off this d*mn oral pollution.

As Alf used to say...."Where's the casserole dish?"

"Why do you ask, Alf?"

"The cat won't fit in the toaster. HAH!"

I fit in the toaster. Unless you like raw meat, I can still hold anyone's pork chop for them...but the Curse for this Accomodation.....is that I'll talk your blinkin' ears off! :lol:

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Addie my dear,

When I signed in here and saw that you had posted here either very late or very early, it made me a little nervous. It sounds like this decadron stuff puts your gray matter in overload. Wouldn't it be great if you could bottle this energy to have if fatigue sets in. These damn meds, can't live with them, can't live without them. I truly believe if we read all the small print with all of them, we would never take any of them. Ah, modern science.

Hope this settles down and you can get a decent nights sleep. They won't let you have even one glass of wine?

Keep us posted.

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Hey Addie,

Sorry to hear about the Decadron high. As far as I know it's a pretty normal reaction to be keyed up and not able to sleep. Mom had great difficulty sleeping and would be seen rolling around the hospital at 3:00 in the morning looking for coffee and having chats with the maintenance personnel!

The side effects did eventually settle down although she did have to settle for a little less sleep than usual (and catch catnaps!). I will pray that everything settles down for you... quickly!!

Blessings.

Kel

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I'm going to enlist the aid of my rad onc today, to talk to Cooper about using prednisone instead...which I tolerate very well.

They will either agree to my need to get off this crap...or I will raise some major hullaballoo!

Not sleeping is taking time off my life. It's healing to sleep. I need sleep.

I don't need Decadron to remind me what I missed by ignoring Timothy Leary all those years. :roll::?

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Addie, I don't know whether to laugh or cry!!! Your post EXHAUSTED ME!!! You poor thing... hope the doc lets you switch to a drug that you tolerate a little better.... it is weird cos when Dad was on decadron he had no effects at all.... who can figure???? Still praying....

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Ah, Timothy Leary.............

What a blast from the past.

I loved your post!, Addie.

I love that I am not alone in spending wakeful, fitful nights composing snappy retorts to those who have hurt me!!!!!!!!!!!!!!!!!

I know it is not the best thing to do.........but it IS so therapeutic.

Honey,

We love you. I hate that you feel like you do. I hate that you can not sleep. How can you fight when you are exhausted?? Brian did not sleep either.......Wish we were neighbors........Couldn't we give the neighbors a scare>> Running around in nightclothes with pork chops?

Pat

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Oh Addie,

You are not alone in your reaction to Decadron. Every time Mike had to take it by pill the day before and the day after chemo, plus the dose they infused, he was bouncing off walls. He would get blood red in the face also. There was no way I could keep him still and he would always decide to get in the car and go to visit friends , the library etc on those days. I was afraid for him to drive. He had no patience and was a jeckyl and hyde to live with. It does also give you a ravenous appetite. Bless your heart, hope something can be worked out like a lower amount.

Love,

Sue

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Gosh, I thought I was the only one that was up at that time of night and or morning, allowing my mind to wander in all directions. Addie, I hope you can channge meds really soon so you can get some well needed zzzzzzz's. Being awake at all hours is not a fun thing. It seems that when I have these nights, I either want to clean the house or talk on the phone and neither are very practical at 3:00 am. Hope you get some good news when you see the doc today! By the way, I loved reading your post!

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Hi Addie,

Looks like I may be a little late leaving for work after reading your posts. :shock:

You poor girl, being sleep deprived can make you a little nutsy. :shock:

Wish I had just a little bit of that when I do my housework. :D

Thinking of you and hope you can atleast get a nap today.

How long are you suppose to be on that medication?

Hope you don't wind up eating the pork chop out of desparation. :)

Maryanne

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Addie,

I love the humor you use to describe a truly terrible ordeal!

My dad was on 16 mg/day of Decadron for over 3 months, and while it's possible you may get used to it, he didn't. His symptoms just kept getting worse: sleeplessness, anger, forgetfulness, anger, weight gain, anger, insatiable hunger (especially sweets) that caused him to eat all night while he wasn't sleeping, anger (seeing a theme here?). He reached the point in one of his hospital visits where he was throwing things and cussing every nurse that walked in the door. It was terrible for him because he would lose his temper and then be remorseful, but he'd lose his temper again. He couldn't help it no matter how hard he tried.

Most horrifying, however, was when his legs became so weak that he started falling down and eventually couldn't walk at all. At one point he couldn't even feed himself because of muscle weakness in his arms. The doctors did all kinds of tests and confirmed that it was the Decadron, not the cancer, causing it.

Good idea to see if the doctor will switch you to Prednisone, if possible.

Good luck!

Pam

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Oh Addie--

I have no experience with Decadron but I can see what it does to you and you sure don't need it if there is something else which "agrees" with you. As someone else said, I, too, was exhausted by the end of your post. I was just outa breath and may need a nap. Hope they get you on Prednisone and you catch up on your sleep tonight.

Thoughts and prayers comeing your way.

gail p-m

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Decadon was bad enough for me in the IV, I really feel for you Addie. It's awful to be so tired and can't sleep, and worse yet, knowing it's the da** medication!

Hope things get better soon!

Cindy

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Oh, Addie. I'm with Sharon on this one -- as we say down here in the south, "that about wore me plumb out!" Interesting how something so unfunny can be so funny at times, huh.

Fortunately, I've avoided the oral steroids, and only had a few doses of the IV kind, so haven't had what you describe.

Here's hoping for some sleep for you soon, and plenty of it, and an alternate Rx. I think the point is to HELP you, not make you uncomfortable, no?

As to the house, what about I come and get you, and the both of us will make a trip to my mom's house in Texas, then your house in AZ, and take care of 'em both at once. (Bring matches!)

Take care, you.

Di

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Good luck with the decadron, i've never had prob's with it when i took it for severe tooth ache year's ago but tylenol 3 wired me to the wall's and i thought i was superman and i have the car accident to prove it. Addie i was raised in Arizona (Phoenix) and where in the name of HOT SUNSHINE are you having your house built?? I remember John F Long building home's by the thousand's and some of the home's had gap's between the wall and ceiling and they were never condemned.And almost 2 year's to build a house all i can say is they must be the slowest contractor's in AZ history. As for door's warping they must of done it during the monsoon season there and left them outside.Not meaning to be nosey but just had to add my comment's from a old desert rat...

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Okay...here's the deal. Decadron works better on brain swelling, etc. than prednisone. BUT...the rad onc cut me from 8 mgs. to 4 daily. Said to try that, but if I didn't get any relief to let him know...and I said, "Oh you can BET you'll hear from me!" :roll:

Hubby sat there and said if something weren't done, HE might kill me himself. :shock::D (I betcha in this state, I could take him if he tried, though! :x:roll: )

Pred worked for me last time, having PCI, just fine. But this time I've got a head full of mets which all by itself could cause swelling...and probably is, because I am having a few scattered mild headaches. Vision is more blurred too.

I start rad on Monday. They did the simulation/mask today.

I just ate lunch and since, according to my Pharmacological Daily Schedule...I have no pills to take for a few hours....guess where I'm going?

No, not Disney World :roll: .....TO BED. Alone. Not even a dog to snooze with me cuz she twitches in her squirrel-chasing dreams and wakes me up!

Wish me a good afternoon's sleep, will ya?

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