decadron

mickey · 01-11-2006, 02:18 PM

I am trying to differenciate between symptoms of my brain mets and side effects of decadron. Any insite. Thanks,

Barbara H. · 01-11-2006, 03:16 PM

Decadron made me hyper, manic, sleepless, bloated, and weak, all at the same time. When I had brain surgery about six weeks ago I convinced my surgeon to get off of it after about 9 days. I hate the stuff. Unfortunately, for some of us it's necessary. What are your symptoms?
Best wishes,
Barbara H.

mickey · 01-11-2006, 04:53 PM

my symptoms are the usual: non sleep and over eat. I can totally handle those with no complaints. The main one I have found is a weakness in my arms and legs and some shakiness. I am still walking an hour a day, although a little slower and the balance is fine . But I have to watch for mets symtoms since mine went from MM to CM is 2 months and was recommended a second round of WBR but opted for chemo: temodar and xeloda instead and my onc is a little nervous about that.

Barbara H. · 01-11-2006, 07:26 PM

Weakness and shakiness is caused by Decadron. Have you asked if you could lower the dose or get off of it? You may be able to, if you don't have swelling or headaches. Maybe you need another MRI to determine that, just for the treatment. I would be demanding. Tell your doctor how bad it is making you feel. Your quality of life is important. One thing about being off the Decradon is that you are more likely to feel it if the mets start to grow. I can't give you medical advice, but I would certainly discuss this option with my oncologist. You also want to keep yourself as strong as possible. I would also resist a second round of WBR for as long as possilbe. I would persue the other options that are out there now, and hope that others become available.
Good luck and let us know how you are doing. I'm impressed that you are walking an hour each day.
Best wishes,
Barbara H.

jojo · 01-11-2006, 11:56 PM

I had been on decadron for a few months early last year. So, when I was reading about your symptoms, I knew right away that they came from decadron. For one thing, I couldn't even hold a pencil and write my name, my hands kept shaking. I also had trouble going up & down the stairs at my house, cuz according to my onc nurse, I was losing msucle mass in my legs, again another common symptom from decadron.

But I'm not too sure about the balance, though... You could be having balance issues, due to some muscle loss in your legs. However, I would want to double check on that one, if I were in your shoes.

Take good care of yourself. Keep us posted.

jojo · 01-11-2006, 11:59 PM

I forgot to mention that a high appetite and going at 500 mph (in other words, hyper / maniac) were also the prominent symptoms that I had from decadron. I just kept eating, eating, and more eating! And I was talking too fast, always one step ahead of myself.

DeborahNC · 01-12-2006, 06:58 AM

I don't have mets, but the Decadron and the Benadryl given each chemo infusion was making me crazy with side effects. The Decadron was lowered to 10 mg last infusion, but I was still given 50 Bendryl and had to sit for over an hour to let the side effects subside before completing the chemo. My onc has d/c'd further Benadryl, but does not feel comfortable giving no Decadron at all.

As for the side effects; stumbling, toe dragging, eating binges, have to drag myself up the stairs in my house by the handrail, an all over weird, wired feeling.

mickey · 01-12-2006, 07:03 AM

Thanks to all. I do not have balance issues and had previously lost 45 lbs so don't mind that either. It was the weakness and shakiness that bothered me most. Does the muscle mass come back. I am hoping that by walking, I am building up. I have always played tennis and worked out.

01-12-2006, 08:25 AM

Hi Mickey,
Barbara gave you great info...

My experience was also muscle weakness/loss of mass. However, yes, it did come back for me. I would be concerned tho', with an extended dosage schedule of the dec. I was initially put on the higher dosage and was finally off after 4 weeks. But it ALL happened in just that time. Horrible. I do call dec the drug from hell.

If you do not have swelling/edema, symptoms, there is NO REASON for you to be on this crap. Yes, it DOES do it's job if you have problems, but otherwise I suggest/hope you get off as soon as reasonable with the down-dosing.

When do you get a follow up MRi?? I have had two, both after two rounds/months after my chemo combo. I have another at the end of the month. When for you?????

I think the walking is GREAT. Good for you, hon.
xoxoxhugs,
patty

mickey · 01-12-2006, 10:54 AM

I am so glad to connect with you, Patty. You are the one that caused me to mention the temodar/xeloda regime to my doc and although he originally said the only option was wbr, he looked this up and agreed to give it a try, but if any symptoms show up, reevaluate. I am on dec because as well as mets, there was quite a bit of edema in the brain. I am going to get a lowering of dec as soon as I can. I am starting today 2nd round 14 days xeloda, 5 days temodar. Then MRI. Lets keep in touch.

Mickey