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May 3, 2013 at 6:31 am #21234DianapParticipant
Just wondering if anyone else went on this steroid ‘if’ they had a brain tumour.
I did and had some terrible side effects. I realise it is an important drug at this stage, and many may have been absolutely fine on it.
However, any input would be great, whether you had no problems taking it or obviously the opposite.
DianaMay 3, 2013 at 11:13 am #60355jmmmParticipant
My husband was on dexamethazone for a few months when they found his brain tumor, and through a craniotomy and gamma knife. He has also been on it for the past 8 months to control the swelling of brain necrosiss. It sucks! Mood swings, increased appetite, inability to sleep, puffy face, bloated belly, thinning of bones, mood swings, loss of muscle mass…did i say mood swings…they are awful (very controlling, anxious, angry, you get the gist). I guess it’s a necessary evil..they control the swelling and allow him to function day to day. At the beginning, he would also get very flushed and have a racing heart within a couple hours of taking it. That got better over time. Eating protein when he takes the steroids seems to help…he gets the shakes really bad when he doesn’t eat. Best wishes…it’s a tough drug to take, but it works.May 3, 2013 at 11:45 am #60356BrendanParticipant Hi Diana,
I, too, was on decadron following GammaKnife (last July) and craniotomy (Nov). My experiences were similar to jmmm’s husband. My wife said that there was an ‘edge’ to me that was never there before. My mood swings weren’t too bad, but I did get agitated easily (although I was able to recognize this and it wasn’t too bad). I was always hungry and never satiated. I gained about 25 pounds, had trouble sleeping, and was blessed with a puffy face (why can’t it make your teeth whiter?). However, since I was awake all the time I ripped through some books that had been on my nightstand and my house was incredibly clean for months (not much to do at 4am). I found early morning walks therapuetic. It will be easier to cope with the side effects if you concentrate on the fact that it is controlling the brain swelling.
Good luck to you!May 4, 2013 at 1:56 am #60357Sandalwood36Participant
Side effects sound pretty much the same as other steroids (prednisone) that my husband and I have had lots of experience with due to asthma and copd (we used to call Bob “prednisone man” when he was on it. He was like a totally different person (not for the better). Steroids are amazing drugs for all that ails you, but they have some pretty horrific side effects. Good luck and god bless.May 4, 2013 at 3:45 pm #60358kylezParticipant Diana, are you still on decadron or have you been able to taper down/off?
I was on it maybe for a week before and a week after each craniotomy, and for a couple or three days during each radiation treatment. If I remember correctly. Fortunately I was able to get off it those relatively short times each time. The main side effect I had over those times was the difficulty/restless/interrupted sleep.May 4, 2013 at 7:59 pm #60359Catherine PooleKeymaster
You might want to read more about steroids here: http://www.nlm.nih.gov/medlineplus/steroids.html
They are powerful drugs with powerful side effects sometimes.May 6, 2013 at 6:59 am #60360Johnfdc7Participant
I was on a high dose of Dex (8 x 3mg per day initially) for about 3 months after discovering 2 brain mets last November. With hindsight I was beginning to see neuro symptoms weeks before I was hospitalised – difficulty concentrating at work, difficulty composing sensible emails, text messages etc. When the docs saw my scans, they were amazed that I had been able to walk into the ER given the degree of swelling in my brain. Within 24 hours of starting Dex, I was feeling more normal again. Despite battling melanoma since 2005 and having been through numerous surgeries and “watching” slow-growing mets in lungs, liver etc, the brain mets (and their effects) were the first time that I ever felt melanoma was actually making me sick. I do agree with you that this drug is an effective and necessary drug at this stage in the disease but it is a tough drug to deal with. I suffered a lot of the side effects that folks have already mentioned here – weight gain (10kg in 2 months and boy is it hard to shift afterwards!), erratic sleep patterns, moon face, strength loss (I would struggle to pull myself up from a kneeling position). With the sleeplessness, I just tried to roll with it – if I was wide awake at 4am on a dark winter morning, I just got up and got on with the day; if I needed a rest during the day I took it. When it was time to come off Dex, I tapered off slowly over about 6 weeks. The taper was effective in that I didnt experience any acute withdrawal symptoms when I hit 0 but looking back it has been months after that I have been able to get back to normal activity levels (perhaps not all due to Dex!). Thankfully at last scans my head was clear due to a combination of Dabrafenib (GSK Braf) and SRS but I know further brain challenges may only be around the corner – when that time comes, I will be glad to have Dex as a treatment but will also dread re-starting it as I will know the tough road ahead this time! Hope this info helps JohnJune 9, 2013 at 5:15 pm #60361DianapParticipant
Thanks for your replies.
I am trying to stay off this subject at the moment as it still makes me mad!!! which is said tongue in cheek, as it did…
What really ranks me is the word ‘mood swings’. Why can’t they say schizophrenia and psychotic episode’s. It does say it somewhere on some literature I found, but hey who goes hunting for that information when being diagnosed with a brain tumour.
Yes I know I was a rare case, I always have been
but when you ask for help from the experts which my family, they too might as well hit their heads against a brick wall. Instead, they struggled big time on their own. Eventually unable to copy, they had to enrol the help of close friends, and take time off work and work in teams.
There was no help. Get on with it or ‘her’ in my case. I feel for my family most, what I put them through, some I can remember, days were lost, but many days I wish I had forgot….
My family’s response to me is; ‘whatever doesn’t kill you makes you stronger’. They were lucky as my sister was very much in this bracket at one stage.
Enough said unfortunately, there is no clear route in the medical world. My brain tumour was missed on my PET scan in January 2013.
There were hardly any symptom’s surrounding my brain tumour they crept up, were very vague, but my gut told me something wasn’t quite right. I was on the case though and if my new Consultant hadn’t told me the brain was included in the scan, I would have demanded one.
Funny I should have know something was up when I received a call from my ‘sacked’ Oncologist. She rang to see how I was after my brain tumour was confirmed on a scan, prior to ippy. Word had filtered through
😮I thought it strange then, but put it down to a ‘no hard feelings’ and good luck call after our parting of the ways, sounds far more polite, when I had my doubts on our relationship.
It was lovely to receive a letter from them a few days before my surgical resection in April when it had plenty of time to grow! This is the best part in the letter
‘In hindsight we were able to visualise the abnormality in your brain on the scan from the end of January 2013’.
So onwards and upwards, I have just completed my final ippy with scans and the dreaded appointment for the results at the end of June.
Only sick once and yes that is when I had the fridge attached to my back, as my husband tells me I didn’t go anywhere without it
It has taken a long time to be back to ‘normal’ whatever that is, now I just have to pay off the £10,000 credit card bill I acquired in the four to six weeks on dexamethasone. Yes I was manic in everyway, but a girls gotta shop LOL!
Good luck to you on your journey xxJune 9, 2013 at 7:04 pm #60362
I had seizures from a presumed new brain tumor (my third) four weeks ago. I started with 4 mg. 4 times a day. Right now, I’m at 2 mg. once a day. I do get up for an hour in the middle of the night and probably am sleeping one hour less a night total. I suppose someone examining me very closely might say “manic.” I would say: in a great mood, very focused, very happy and hopeful. My wife would say the same. I am also on the anticonvulsant Keppra since the seizures, 1000 mg. twice a day. So are the drugs having the positive impact I would name it. The only thing a little untoward is that I am probably a little more out front in my comments than I might otherwise be. So a little less filtering. I hate to think it might go away when I come off whatever meds are doing it, if they are actually playing a part in my “better mood,” not a bad thing in general for a Stage IV melanoma patient. Two doctors whom I have talked to informally about my upbeat being a symptom of the drugs seem more to see it as a positive symptom of the brain shakeup of the seizure, which sometimes happens apparently. But this, of course, is very unscientific.June 16, 2013 at 1:50 am #60363KarenKParticipant Similar story here. Hubby has brain mets and was on 8mg post surgery. Describes feeling like ‘Superman on acid’. Said whatever came into his mind, was awake all hours of the night, hyped up and wanted to shop! For me, it was like having a 6ft tall ADHD toddler with power tools – a real challenge. He was washing the car, planting veggie seedlings, tidying cupboards, listening to music, organising the garage, juicing veggies etc all hours of the night. He felt on top of the world at that time and misses feeling ‘so good!’. Got heaps done . Slowly peeled back to nil Dex and symptoms returned – another tumour playing up.
The Dex has its benefits – reduces his symptoms, but the side effects are rotten as others have mentioned – muscle loss, chubby cheeks, sleep deprivation, thinning of skin plus other side effects we don’t see. We’re down to 1mg Dex now but hop back up to 2mg when taking the chemo drugs for five days. Ultimately plan to come off them completely – heard the body can become immune to them so want to keep them available as back up. Certainly help with the headaches and the first thing they do if a tumour is bleeding and causing problems is to put the Dex back to 8mg. It’s a love/hate thing – love the pain relieving effect, hate the side effects.June 16, 2013 at 6:24 am #60364
As of my nocturnal “work”at 2 am today for example I can definitely relate to the Superman on steroids example just cited. I took a tough city hike with lots and lots of narrow staircases in tall old buildings yesterday. For well over a year, I would have been in extreme hip, leg, and back pain from this. Now, not a tinge. Lots of reading, cleaning, organizational energy. More spontaneity in speech and lots more fluency, etc. etc. Not sleeping more than 5 hours a night can’t be particularly good for me, but I don’t have untoward symptoms. My wife is not hesitant and I ask her to point out problems she views or experiences. She’s mostly happy that I am almost always very happy, but she does see me as more abrupt sometimes though usually in a relatively kind way. I’m swimming about 2/3 of a mile about every other day, not to train but to get some aerobic exercise and that proves calming and not at all difficult except for a little calf cramping near the end, because I have been off and on so much this year. Actually, I feel so good, that I am a little concerned when they cut down (I’m taking 2 g. a day) or want me to drop. Of course, being declared NED last week didn’t spoil my good mood. Next doctor’s visit in 6 weeks. I am dealing with two small problems, MRSA and low blood sodium.June 16, 2013 at 9:01 pm #60365Catherine PooleKeymaster Did you say MRSA? The infection? http://www.mayoclinic.com/health/mrsa/DS00735
That can be pretty dangerous. Hope it is being squared away. By the way I could use some of your energy!June 20, 2013 at 6:40 am #60366
Wonderful to be able to continue report the high energy levels and great concentration and even joy.I’m certainly not worrying about my melanoma, though I know I have had an easy go compared to most of my fellow Forum members. It’s as if I have become a different person in good ways since shortly after my seizures and beginning what is now the dosages of Keppra (1000 mg. twice a day) and have gone from 16 mg. to now 2 mg. daily of Decadron. The doctors I have consulted are not sure of the cause of all this as I have mentioned before. But I am intrigued that others do not seem to be reporting anything all that similar to my experience. I’m up in the middle of the night most nights for an hour or so and sleeping an hour or so less than usual but without much late day fatigue. So I’m still hunting for someone with a similar experience to my own. I’ve explored the sometimes side effect of dex, hypomania. It’s possible that someone might choose that as what’s going on, but it’s not the easiest thing to define and I understand hypomania if it does not move towards some troubling signs of mania, which a psychologist alerted me and my wife too and I’m not knocking on the door of, is not all that bad a thing. Some even think that a good share of our “great people” in history were hypomanic. I’ll close on that manic touch.
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