CONFUSED ON DECADRON

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CONFUSED ON DECADRON

by HEARTBROKEN39 on Fri Aug 10, 2007 12:00 AM

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Hi, I have been reading all these post over the past few weeks, and while I know everyone is different, everyone seems to have 1 thing in common.  Decadron.  My husband was only on that for about 2 weeks.  He had some issues on it and was switched to hydrocortisone 10 mgs in the morning and 5mgs at night.  I guess that is the amount of steroids your body naturally makes.  Does anyone have any insight?

Husband dx on 5/17/07 right frontal lobe, engulfing the optic nerve 50% resection, radiation, 14 days of temador. MRI August 21. Scared to death!!

RE: CONFUSED ON DECADRON

by bpanc on Fri Aug 10, 2007 12:00 AM

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Ann, my husband was diagnosed 4/7/07 and has been on Decadron ever since.  We cannot get him weaned off.  The lowest we've been was down to 1 mg. a day and he began having severe daily headaches.  Back up to 8 mg. a day and the headaches disappeared.  He did 34 radiation treatments and 42 days of Temador.  The first MRI after radiation showed a new area of tumor within the area that was radiated.  He just completed his second infusion of Avastin and CPT-11. We have weaned down to 4 mg. a day of the steroid.  They have been trying the taper very, very slowly this time.  Aside from the weight gain and moon face, he had little side affects from the steroid.  Lately, however, his legs have become pretty weak.  Muscle atrophy is common with long term steroid use.  Which is worse?  Debilitating headache or weak legs?   I wonder what the difference is between what your husband is getting and Decadron?

Good Luck and you are not alone being scared to death.  That seems to be common among us caregivers.

Barb

RE: CONFUSED ON DECADRON

by lostconfused on Fri Aug 10, 2007 12:00 AM

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Ann,

Hi, You are right everyone has steriods in common.  My mom was dx with GBM IV 2/07, surgery, radiation and Temador didn't work.  Now on Avastin & CPT-11. 

Mom is on 20 mg a day of Decadron.  Every time the dr tries to decrease this she ends up being unresponsive.  It seems like a lot of people have trouble getting off the steriods.  I am concerned with drug induced diabetes with mom on such a high dose.  If you could, would you give me some information on the hydrocortisone your husband is taking? 

What type of treatments is he on now?

I will keep you both in my prayers.

Tammy

RE: CONFUSED ON DECADRON

by Willing on Sat Aug 11, 2007 12:00 AM

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Decadron is a short term answer to a long term problem and most people are not told this.The doctor will say we are going"to begin reducing the dosage as soon as possible" but the truth is most brain tumor patients are never able to get rid of it.Decadron over a long period of time has a horrible effect on internal organs and mental state.Mrs. Dubinski from Chicago said it best in her son's journal before he died."Decadron is the Devil!".

RE: CONFUSED ON DECADRON

by VA_Husband on Sun Aug 12, 2007 12:00 AM

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Hi Ann: My wife has GBM-4 and was on Decadron for about 7 weeks (from the diagnosis until the end of radiation and temodar). This stuff is so helpful in keeping the swelling down but it really had some other negative effects. There was one week where she only slept 2 hours per night (after sleeping pills!) and we had many talks at 2-3-4 in the morning. She was taken off of it in a 3 day period due to this. The key is to have the smallest effective dose possible. I hope the new medicine is helping. I'm not sure about what a persons body normally produces; but I do beleive that hydrocortisone is a weaker type of steroid.

I will keep you in my thoughts.

 

C

 

RE: CONFUSED ON DECADRON

by Madeline_Ruth on Sun Aug 12, 2007 12:00 AM

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Decadron is a stronger steroid, and more specific to central nervous system swelling/edema. It's more effective for swelling for brain trauma, i.e. post op, post radiation, or an invading tumor (also head injuries/traumas). It takes less Decadron to do the same job as hydrocortisone too, thus the 4-8mg doses vs. hydrocortisone doses of 25-50mg. Brain tumor patients who suffer post treatment or post surgical swelling, have to stay on Decadron in order to function or participate in life. After 3-4 months of Decadron, it becomes "long-term" steroid use, and then the side effects of this long-term use begin, and it becomes much more difficult to wean at this point. Some patients can never get weaned at this point because their adrenal glands have been suppressed way too long and can't rebound sufficiently to sustain proper functioning and organ support. The best time to try to wean steroids is just after surgery. During or just after radiation is not a good time, since the radiation can cause edema and necrosis which can cause swelling too. And by this point, most patients are looking at 3 months of Decadron, and this is the difficulty in weaning. On brainhospice.com, she mentions that most GBM patient's medicine cabinets have several doses of Decadron remaining after life ends, and that is because of all the trials in weaning and then increasing at the end. It all depends on where the patient is in their treatment too. If there is recurrent tumor, and nothing else that can be done, then there is no point in making someone suffer by weaning off of Decadron, because of fears of side effects of the drug, because the alternative is worse. If the patient is going to work every day or participating in life well at low doses, then it would be good to try to slowly wean off if possible. And slow weaning in this situation is over 4-8 weeks at least. I hope this helps----

RE: CONFUSED ON DECADRON

by wendym on Thu Aug 16, 2007 12:00 AM

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The decadron scares me the most, of all the drugs my husband is taking for his stage IV glioblastoma. He has sleepless nights, with small amount of steroid induced diabetes symptoms ie: up to the washroom a lot. He has muscle weekness in his legs, which could also be the final days of radiation. But, what is the alternative, like you said.?

We just pray, the radiation and chemo will eradicate this cancer, there will be no re-growth, and that he weens off the decadron well.  What a utopic life expectation!

 

wendy

 

RE: CONFUSED ON DECADRON

by Mittmool on Sun Oct 28, 2007 12:00 AM

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I had 5 rounds of TO MO Brain Radiation to  shrink a  2.3 mm tumor located at  the Cerebellum of my brain.  The Radiation Treatments  went very well with To MO  Therapy which I finished two weeks ago. To Mo Therapy is  one of  the newest  therapies around now available at U-Conn University in Farmington, CT.  The worst case scenario was every being put on Decadron. I started Decadron treatments at  4 mg for 1 week on 9-17-07 and then I was tapered down to taking 2.0 mg. Now I am  still taking Decadron but at 0.5 mg.  This drug is got to be the worst drug in the world.  After taking this drug for abut 2 weeks I started to feel no sensation in my legs.  I can barely walk and need the support of my husband to get out of bed. I can't believe how this drug has weakened my muscles called Atrophy.  I can't even gain support to lift myself off the toilet after going to the bathroom, it's horrible.  I am taking a lot of supplements to compliment the effects of the Cortisol which Decadron diminishes and hopefully my strength will return soon.  My ankles are swollen daily which I soak in apple cide vinegar to bring the swellen down.  I also take Boswilla, Quercetin, and Co-Q 10 which are natural supplements that support the damaged tissue. I have even experienced a weak bladder just about making it to the bathroom every time.  I feel num in many spots of my legs and I do massage my legs daily.  It all helps, but it's a very scary situation and I hope that one I am wiened off Decadron I will gain my strength back.  Tomorrow I start tapering on Decadron down to 1 MG a day for 4 days then 0.5 in the morning and in the evening a half of 0 .5 for 4 days.  Then half of 0.5 in the morning - and 1/2 of 0.5 in the evening.  Then for the next four days just half of 0.5 in the morning and I'll be finished.  What I do notice when tapering off each time I feel more pain in my legs due to the withdrawal.  I take Oxycodine every 4 hours which helps tremendously.  I have not experienced any dizziness, headaches or any other side effects.  I did not have surgery, I opted for To Mo Radiation which isolated the tumor in the cerebellum part of the brain.  My appetitie is the same but my mental state is up and down due to taking the steroids and feeling like your losing control.  I hope this information has helped you somewhat in your battle with Decadron.  It seems like we are all suffering one way or another while taking this drug.  I can also tell you that Boswilla is a natural supplement that also eliminates swelling in the brain and is much safer than taking steroids.  Of course you can't just stop cold turkey, but you can implement Boswilla Serrata - 120 veg caps (450 mg each while taking Decadron.  You can order Boswilla on line by going to :  www.BoswelliaSerrata.  Good luck. If you need any further information please do not hesitate to contact me.  Francine     

 

in FI

RE: CONFUSED ON DECADRON

by Texacan on Sun Oct 28, 2007 12:00 AM

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On 10/28/2007 Mittmool wrote:

I had 5 rounds of TO MO Brain Radiation to  shrink a  2.3 mm tumor located at  the Cerebellum of my brain.  The Radiation Treatments  went very well with To MO  Therapy which I finished two weeks ago. To Mo Therapy is  one of  the newest  therapies around now available at U-Conn University in Farmington, CT.  The worst case scenario was every being put on Decadron. I started Decadron treatments at  4 mg for 1 week on 9-17-07 and then I was tapered down to taking 2.0 mg. Now I am  still taking Decadron but at 0.5 mg.  This drug is got to be the worst drug in the world.  After taking this drug for abut 2 weeks I started to feel no sensation in my legs.  I can barely walk and need the support of my husband to get out of bed. I can't believe how this drug has weakened my muscles called Atrophy.  I can't even gain support to lift myself off the toilet after going to the bathroom, it's horrible.  I am taking a lot of supplements to compliment the effects of the Cortisol which Decadron diminishes and hopefully my strength will return soon.  My ankles are swollen daily which I soak in apple cide vinegar to bring the swellen down.  I also take Boswilla, Quercetin, and Co-Q 10 which are natural supplements that support the damaged tissue. I have even experienced a weak bladder just about making it to the bathroom every time.  I feel num in many spots of my legs and I do massage my legs daily.  It all helps, but it's a very scary situation and I hope that one I am wiened off Decadron I will gain my strength back.  Tomorrow I start tapering on Decadron down to 1 MG a day for 4 days then 0.5 in the morning and in the evening a half of 0 .5 for 4 days.  Then half of 0.5 in the morning - and 1/2 of 0.5 in the evening.  Then for the next four days just half of 0.5 in the morning and I'll be finished.  What I do notice when tapering off each time I feel more pain in my legs due to the withdrawal.  I take Oxycodine every 4 hours which helps tremendously.  I have not experienced any dizziness, headaches or any other side effects.  I did not have surgery, I opted for To Mo Radiation which isolated the tumor in the cerebellum part of the brain.  My appetitie is the same but my mental state is up and down due to taking the steroids and feeling like your losing control.  I hope this information has helped you somewhat in your battle with Decadron.  It seems like we are all suffering one way or another while taking this drug.  I can also tell you that Boswilla is a natural supplement that also eliminates swelling in the brain and is much safer than taking steroids.  Of course you can't just stop cold turkey, but you can implement Boswilla Serrata - 120 veg caps (450 mg each while taking Decadron.  You can order Boswilla on line by going to :  www.BoswelliaSerrata.  Good luck. If you need any further information please do not hesitate to contact me.  Francine     

 

in FI


 

Sometimes the swelling in the brain and seizures can weaken your legs and you might benefit from support hose...put them on first thing in the morning and remove them at bedtime and raise your legs higher than your heart for 15 min 3 x a day for swelling. There are other steroids for edema in the brain. Ask your Neurologist.
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