joanie55 Posted December 29, 2006 Share Posted December 29, 2006 Well, I have only two treatments left. I've been feeling just wonderful, EXCEPT when they trie to lower my decadron, I got sick. Very headachy, nauseous, just awful, so they raised it back up. Wondering what you all know about this. I'v heard its hard, but need to hear more pros and cons. If it were up to me, I'd stay on decadron 4-ever, but i know there are bad side effects. Help!!! Joan [/url] Quote Link to comment Share on other sites More sharing options...
Nick C Posted December 29, 2006 Share Posted December 29, 2006 Joan. Mom was on decadron, loved it for the first week or so...and said she'd rather just stay on that. Well, after 2 weeks of it, the euphoria wore off, her legs got extremely weak, she was certainly moody and impatient, the bloating of course (she didn't care, said her wrinkles went away . But it really isn't, in high doses, a long term solution. They can lower the doses, but I just wanted to let you know. No one told us that the good times on decadron would not last. We didn't get very far into the dropping of the doses of decadron, but I would say having that as a goal is probably a good idea...better to jump off of it than feel crappy enough to REALLY want to jump off of it. Quote Link to comment Share on other sites More sharing options...
joanie55 Posted December 29, 2006 Author Share Posted December 29, 2006 Nick, Thank you so much for your honesty. I can't fight if I don't know what I'm fighting. Kind of what I was guessing, but great to hear it from you. You've been there. Joan Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted December 29, 2006 Share Posted December 29, 2006 Joanie,The steroids have to be gradually diminished by a little bit at a time.They do affect the mucles in the top of your legs.I was told it is not uncommon to have to go back on them (about 90% of the time).They are very important in reducing the swelling in the brain.There wasn't much I could do about the lack of sleep,nothing seemed to help except just staying up. Quote Link to comment Share on other sites More sharing options...
dchurchi Posted December 29, 2006 Share Posted December 29, 2006 Joanie, I have shared Alan's expeirence with Decadron before. he was a rare case, in that the Decadron put him into a fullblown psycosis and landed him in the psych ward to detox him off the stuff. That was the longest 3 weeks of my life. So needless to say Alan and I are not big fan's of Decadron. Though it did make for some very funny stories after the fact. Quote Link to comment Share on other sites More sharing options...
Nick C Posted December 29, 2006 Share Posted December 29, 2006 Frank, yes, I forgot (didn't forget, just forgot to write down). The insomnia was intense for Mom too. Quote Link to comment Share on other sites More sharing options...
ernrol Posted December 29, 2006 Share Posted December 29, 2006 Joan, I don’t know much about it, but I can pray. That’s universal. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
karen335 Posted December 29, 2006 Share Posted December 29, 2006 I was on decadron three different times, each time longer. Had to wean off gradually, each person reacts differently but there are a lot of simularities. You should be monitored by your doctor and with his/her help the dosage can be reduced. I had change in mood and personality, increased appetite, increased blood sugar level, insomnia, nervousness, energy, bloatedness, moon face and as Frank said losing strength in my legs. Look up side effects on the net, Just type in Decadron. It can create some funny stories and after awhile one just wants to get off of the stuff. It does control swelling in the brainand eliminates headaches. Praying for successful treatments... Happy New Year, Karen Quote Link to comment Share on other sites More sharing options...
marym Posted December 30, 2006 Share Posted December 30, 2006 Hi Joan, I'm glad to hear you are almost done. I was on Decadron when I was first diagnosed. I took 12mg for about 7 or 8 weeks and then came off them in a week, less each day. I suffered pain everywhere - every bone ached, it was horrible! So I had a very bad withdrawal. But they wanted me off quickly in order to start the chemo. I am now on decadron again due to the edema from the radiated mets. (It was causing headaches.) This time I am on 4 mg and I have been assured that at this dosage, I will not have the withdrawal problems. Sleep can be a problem, but I take the pill early 5 or 6 AM and then I manage to sleep well. The other side effect is the puffy face and the first time I also had hair growing on my face. Not to the extent that everyone noticed, but I certainly noticed it. (Why is it the hair on my head grows in gray, but on my face it was nice and dark?) This time I am a little puffy, but no added hair! Let me know how things progress. Mary Quote Link to comment Share on other sites More sharing options...
Joe B Posted December 30, 2006 Share Posted December 30, 2006 I was just weaned off the decacadron 2 weeks ago(I am 7 weeks post nerosurgey for my large metasis), and thought I was fine but went in for a check up yesterday and the did a CT to look at things. Unfortnately they found some Moderate edema. They think its due to the Giladel chemo wafers that were placed in the cavity after they removed the tumor. They release chemo over a period of 2-5 weeks. They have been known to cause swelling while being absorbed by the body. Also I told him I was running pretty intensley again again ( I ran 3 out of 4 days just prior to seeing him ) , and I think I am causing much more blood flow to the surigical site which is still healing and this may have caused the edema.Anyway to make a long story short-- he placed me back on a small dose (2mg BID) of decadron yesterday after I was completely off it for two weeks I was dissapointed, but as the doctor explained to me brain edema is nothing to take chances with. So I see him next wednesday and hopefully I can startt tapering off the decadron again. Quote Link to comment Share on other sites More sharing options...
joanie55 Posted December 31, 2006 Author Share Posted December 31, 2006 Your responses really help a lot. I've been on decadron 12 mg. a day for 9 treatments now. Tuesday is my last one (because of New Years). They tried to lower me by one pill to 8 mg., but It was awful. Maybe it was too soon, so they upped me again. I'm definitely starting to feel effects. Headachey, not as sharp and a little clumbsy. All worth it of course. Still have my hair, but waiting. I know they want to get me off soon. My idea is maybe to go into the hospital for a week. Let them just detox me. Ever hear of that? I'm such a sissy, I just want to go to sleep and wake up normal. I'll probably see my radiologist on Tuesday, so we'll see...... Joan Quote Link to comment Share on other sites More sharing options...
mitzu Posted December 31, 2006 Share Posted December 31, 2006 My Dad was on Decadron for 6 months, dosed at 4mg twice a day, he couldn't stop vomiting without it, due to brain swelling. The only side effect was "moonface", and frequent urination. It's not a long term solution, however - it works. I don't know if "detoxing" would help, there's not much else to help reduce brain swelling/edema. Talk to your onc. about it. Prayers for a better year. Quote Link to comment Share on other sites More sharing options...
Maryanne Posted December 31, 2006 Share Posted December 31, 2006 Hi Joanie, I don't have any experience with that. Joel only takes it the day before, day of and day after his chemo, which I think is a low dosage 4mgs. twice a day. So he had no reaction to it. Just want you to know that I am thinking of you and sending you healing prayers. Maryanne Quote Link to comment Share on other sites More sharing options...
teresag Posted December 31, 2006 Share Posted December 31, 2006 Joanie, Headache and nausea are symptoms of increased intracranial pressure, indicating a continued need for decadron. Swelling from the WBR is probably to blame. Although Decadron is nasty stuff, brain swelling is even worse. My niece takes "prednisone blasts" occasionally for MS, and she hates them too. Good luck sticking it out. With best wishes, Teresa Quote Link to comment Share on other sites More sharing options...
ursol Posted January 2, 2007 Share Posted January 2, 2007 Joan, Since the gammaknife procedure on December 14th, I have been taking Dexamethasone steroids (4 mgs a day). Then with Chemo Thursday I got Decadron and more Dexamethasone for the week tapered to control my nausea. Not sure of any side effects yet. I have had headaches since Chemo. Started Thursday night and intend to call the oncologist tomorrow. Glad your treatments are done, hope you feel better soon! Lilly Quote Link to comment Share on other sites More sharing options...
Marco Jo Posted January 2, 2007 Share Posted January 2, 2007 Hi Joanie, My sis started getting headaches when they weaned her off the decadron as well. So, the doc just put her back on it for a bit. Hope you are feeling better. Happy New Year, marco Jo Quote Link to comment Share on other sites More sharing options...
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