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PostPosted: Sun May 25, 2008 10:05 pm 
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Location: australia
My brother has a gbm1V and has not long finished the combination of the radiotherapy and chemo together, he got through the six weeks quite well, but about a week after radiotherapy finished he had a set back with a lot of swelling at the base of his brain and was rehospitalised and treated with an increase in the dose of dexamethasone. He was discharged after 2 days and is currently on 6mg of dexamethasone a day, he is really concerned about muscle wasting as a side effect of the dexa, he has some paralysis down is left arm after the initial debulking surgery and this arm is starting to look a little wasted. How much and long have people been on dexamethasone without too much side effects, can you eventually get off dexa and the swelling stop.

Regards Deborah


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PostPosted: Sun May 25, 2008 10:52 pm 
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Hi Deborah,

dexamethasone is really a necessary evil for most with a brain tumour, and it is really hard to get off. I have had experience (with Jane) in getting back to zero dex (from as high as 16mg) but it takes a fair while and has to be done very cautiously, perhaps the biggest point being when you get near zero as the body may have "forgotten" how to make it's own natural supply and the glands need to kick-started.

There are alternatives to dex, including boswellia and the like, but dex is the most potent pressure release agent that I have know of.

Cheers,

Ross.


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PostPosted: Mon May 26, 2008 9:23 pm 
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I am newly diagnosed with GBM IV and had my just over 1 CM Dia tumour completly removed on 17 May 08.

I was prescribed Dexamethazone 4mg 3 times a day for 3 days, 2mg 3 times a day for 2 days, 2mg 2 times a day for 2 days and 2mg 1 time a day for 2 days.

The only side effect was the ballooning and a bit of a wait gain that I put down to the Dex. Not that I'm complaining about that as I'm a bit of a weed in that regard.


Last edited by Fraser on Tue May 27, 2008 5:55 pm, edited 1 time in total.

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PostPosted: Mon May 26, 2008 9:53 pm 
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I also have hemiparysis, although I believe that I was given a cortical steroid that contributed to some muscle loss. The rest was through being weeks in a hospital bed. My solution was to increase the exercise that I could/ can do and increase my protein intake (although I avoided the protein drink they gave by default in hospital, pure WPC is the best).

Once I left hospital things started to happen as I was able to handle the lowest resistance & weight. It takes time to build muscle, a year later the difference between my legs is barely noticable. Slowly but surely my arm is gaining more muscle.

So I'd recommend resistance/ weight training. I've put on about 7kg of muscle, I feel and look much better. Although I was already a gym addict before :).


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PostPosted: Tue Feb 24, 2009 4:35 pm 
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I am hating the effect of dex. I have been trying to reduce the dose very gradually. I asked doctor about alternatives and he said "No". I am feeling weakness in my jaw muscles as well as thighs.
I went for a swim yesterday and it felt wonderful until I had to return to real gravity and get dressed into clothes that are getting very tight. I am going to investigate hydrotherapy. My husband is worried I'll have a seizure in the pool. The fact that I have never had a seizure that effected my consciousness seems to not matter. I am told it is possible to taper dex by taking different doses on alternate days.
I would appreciate any advice on how to cope with the side effects of dex and how to reduce the dose as every time I have tried to cut it back I have had headaches and nausea.


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PostPosted: Wed Feb 25, 2009 8:59 pm 
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I'm with you on Dex. I'll be asking about alternatives next time. If you are getting nausea, then you will need to taper it more gradually. Abrupt withdrawal after > 3 weeks use is not recommended.

It seems that Dex is the most commonly known effective drug that they automatically reach for to reduce swelling. If you still need another similar drug, then one approach could be to wean you off Dex while also having a transition to a new drug so that you stay treated. I believe that it would be best to seek a second opinion if you still require further treatment.


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PostPosted: Sun Mar 01, 2009 10:07 pm 
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I have cut dex down to 4 mg/day and am finding I am having some difficulty. Fuzzy thinking, incontinence and unable to lift my right leg. I am wondering if there is some oedema happening. These are the symptoms I had last year when I stopped dex. Should I persist on the lower dose and hope my own body starts to make its own steroids? I have been taking dex for over a year and really want to get off it as much as I am able. Doctors tell me to not reduce the dose but I don't want to end up in a wheelchair because my muscles have wasted.


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PostPosted: Mon Mar 02, 2009 10:33 am 
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I am not a doctor, so I can't give you medical advice. However, I can confirm what Ross said that Dex is the most potent which is why they reach straight for it.

As BT patients we are given high doses. This is usually meant to be short term. Then it can be a trade off between your BT symptoms and those caused by Dex. My understanding is that Dex is intended as a short term management tool usually around the operation; which are often high risk.

As per any drug, the higher the dose and the longer you have been taking it - the longer the taper required. I am nearing the end of a 6 month taper of dilantin. As you are aware, Dex has taken over the production of your natural corticosteroids; hence your withdrawal problems and the long taper is necessary slow to allow your natural levels to build up again.

Self medication is not advised. You need someone who is sympathetic and has the knowledge to manage this situation. When you say doctor are they your specialist? Are you able to get a second opinion?

One thing is certain, experimenting yourself is unlikely to produce the right result. Suggest persist asking questions until you get a sympathetic ear. I personally would follow your current prescriptions until you can get the right advice regarding tapers, possible alternatives and/or managing side effects.


Last edited by kenobewan on Sun Mar 08, 2009 9:15 pm, edited 1 time in total.

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PostPosted: Mon Mar 02, 2009 3:07 pm 
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Hi Ken the Wise,
I am just getting a little frustrated. I can't work and the lack of activity and interaction with my colleagues is leaving me very bored.
I have been tapering the dex very slowly and doing it of my own accord. I will just try to reduce much slower now. I may drop the dose by 0.5 mg a month until the symptoms tell me otherwise. Finding doctors who agree with each other is the reason I am doing this on my own.
The doctors I am listening to are 1. my GP who has known me for 20 years and 2. Medical oncologist who quite often answers my questions with "I don't know".
I don't have a problem with a doctor saying they don't know the answers. I prefer honesty to the chest puffing of some in the profession.
So many oncologists have declared that I am a dead woman walking. I have decided to not believe everything they say. It is time for me to take back some control.


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PostPosted: Mon Mar 02, 2009 9:49 pm 
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I am wise to how much I don't know ;).

While I can't recommend self prescribing, personally I admire you taking control. I'm certainly not going to point the finger, you obviously know the risks.

Taking control of my situation was one of the best things that I did. Certainly slowing that rate of decrease will help.

All the best :).


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PostPosted: Fri Mar 06, 2009 3:12 pm 
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I have persisted with the lower dose of dex and my symptoms have improved. What's more I have had a few nights of really high quality sleep with no tranquilizers.
I was probably being hasty ( a bad character flaw to have along with cancer). I am learning to calm down and not react too strongly to every little hiccough along the way.
For me the key to getting off dex is to do it VERY slowly. I am already feeling much stronger. I walked around for 4 hours with a friend today and although I am now exhausted it will no doubt be benefitial to my strength and fitness.
Wendy


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PostPosted: Fri Mar 06, 2009 9:52 pm 
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Didn't realize cancer was a character flaw ;).

Glad that your withdrawal is working well. As mentioned I am near the end of my taper of dilantin. I have had an unexpected bonus. My cardiovascular strength is coming back.

Previously, after a short a relatively short period of time I would hit an invisible wall. Now I can go until I get sweaty and out of breath. I'm looking forward to getting fitter again (and less smelly ;)!

While this didn't affect my weight training, which incorporates resting between each set, I have missed feeling fit. Its one of the greatest pleasures in life :).


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PostPosted: Sun Mar 08, 2009 11:33 am 
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Hi Ken,
Thanks for picking on my grammar. No one has done that since my mother died.
Feeling fitter is a great thing. I am starting to feel a little fitter every day and it feels SOOOO good.
I have read that Dilantin and dex interact. I would love to reduce the dilantin but don't want to overdo things and upset the apple cart. I get my phenetoin levels checked regularly and doctors are not happy with them. I am on 400mg/day which seems to be a lot more than others take.
Since I haven't had anything that I would call a seizure I wonder if I need that much. That's another question for doctor.
Feel free to pick on my grammar.
Love
Wendy


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PostPosted: Sun Mar 08, 2009 9:33 pm 
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I was on 370mg of dilantin a day - do you have regular blood tests? As discussed, I am nearing the end of my taper. My original neurologist wasn't going to entertain the idea of changing to Keppra, so I found a more simpathetic one.

I said I was feeling tired and gave nanny naps as evidence of the need to change. While this was true I could live with the tiredness, but I was worried about the long term side effects.

I did have an EEG, which can be a false positive, but this at least showed that there was a chance I could try to do without anti-seizure meds. As I had had a grand mal before the operation and focal seizures while in hospital I decided to take the safe route and finally obtained the keppra script.

As far as the grammar goes, may I suggest brain gym. I have brain training software, do memory tests, play sudoku and chess; and research brain tumors :).


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PostPosted: Mon Mar 09, 2009 9:09 pm 
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kenobewan wrote:
and research brain tumors :).


That's equivalent to a full time job isn't it? :D


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