Deacadron implies incredible swelling - what to do?

Hi, due to mets in my brain which have beeen treated with deacadron for 4 months now, I am very much swollen. Especially in my body. At this stage it's not so much an aesthetical problem. I feel bad. Can you help me? Any suggestions? What can you do? Thanks. Beatrice

Beatrice... I empathize with you. I call Decadron the 'drug from hell'...even tho' it does the job intended. It creates so many MORE problems.

Perhaps this info can lead to some help for you:

<<Trial Information
Summary: hCRF’s potential for steroid-sparing in symptomatic brain tumor patients with peritumoral edema.
If you have a malignant brain tumor and require chronic high doses of dexamethasone (also known as Decadron) to control your neurological symptoms, you may be eligible to participate in a study of XERECEPT™ for patients with brain tumors and tumor-associated swelling.
The purpose of this study is to compare the safety and efficacy of XERECEPT™ to dexamethasone, a common treatment for symptoms of brain swelling (edema). This study is specifically aimed at patients who require chronic high doses of dexamethasone to manage symptoms who may suffer from the steroid’s side effects.

Patients will be assigned by chance (like flipping a coin) to 1 of 2 treatment groups: XERECEPT™ or placebo.
A placebo is an inactive substance that looks like the study drug but has no medication treatment effect. The placebo is used in this study to help determine if the effects experienced by study patients are specific to XERECEPT™ or just the result of participating in a treatment setting.

If you participate in this study, you will:
Continue your dexamethasone, but gradually reduce your dose by 50% or more
Make 8 visits over 16 weeks to your study physician for physical and neurological evaluations
Administer hCRF (or its matching placebo) 2 times daily for 12 weeks by injection under the skin--the injections may alternatively be administered by somebody other than you whom you have chosen. The research nurse will teach you or the person you have chosen how to give the injections at home.

Take by mouth 1 tablet of niacin or its matching placebo twice daily
Call a toll-free phone number daily to record your dosing of study drugs

Inclusion Criteria:
Primary or metastatic malignant brain tumor
Steroid-associated side effect(s)
Taking dexamethasone for at least 30 days to control symptoms of edema.
Stable dexamethasone dose of 8-24 mg/day for at least 14 days prior to starting study
Karnofsky score of >= 50
Capable of self-administration of subcutaneous injections twice daily for 12 weeks, or availability of assistance from family/friend.
Life expectancy of at least 4 months
Ability to provide written informed consent or, if unable to provide, have a legal guardian or representative provide written informed consent
For women of childbearing potential: a negative serum pregnancy test
18 years of age or older.

Exclusion Criteria:
Need for surgery, radiosurgery or radiation therapy or new chemotherapeutic regime during the first 5 weeks of study. Treatment with pre-study chemotherapy may continue.
Concurrent enrollment in any other investigational drug or device study, or plan to enroll in such a study during the first 5 weeks of treatment.
Systemic steroid use for any indication other than peritumoral brain edema.
Use of dexamethasone to prevent vomiting. (Alternatives such as Compazine, Anzemet, Zofran and Kytril may be considered.)
Non-cooperation with dexamethasone or anticonvulsant therapy.
Cerebral herniation.
Serious cardiovascular, pulmonary, renal, gastrointestinal or endocrine metabolic disease which would put the patient at unusual risk for study participation (Patients may receive gastrointestinal prophylactic treatment.)
Previous or current neurological disorders that would interfere with adequate clinical evaluation
Clinically significant head injury or chronic seizure disorder, if the condition results in functional impairment or is likely to interfere with evaluations (Maintenance anticonvulsant therapy is allowed.)
Central nervous system infection
Pregnancy, breastfeeding and/or refusal to practice birth control while in study, for women of childbearing potential
Any conditions that are considered contraindications for niacin, e.g. liver disease, active peptic ulcer, arterial hemorrhage, asthma and known hypersensitivity to niacin
For more information about this trial, go to: http://www.ntii.com/products/clinicaltrials.shtml.


Memorial Sloan-Kettering Cancer Center>>

[jojo]

Beatrice,

Like Patty Z, I REALLY do emphatize with you. I had been on Decadron for about 5 months earlier this year. I had swelled up like a round balloon, and I could barely move. I told my family that I felt like a "Raggedy Ann" with very stiff limbs.

I am happy to tell you that when I had finally tapered off the steroids in May, my fluid retention shrinked down to nothing really fast like a poked balloon (figuratively) over the summer, which you all know that lasts only 3 months. This good ole 20 pounds got away from me. :-) Good riddance ~ I am sure that the same thing will occur to you!

[StephN]

Hi -
I also had to take some high doses of Decadron early this year for two brain mets. It was terrible and I know just what you mean.
My face and neck area puffed up, but for the rest of me the drug had a muscle wasting effect and I have spent all the rest of this year trying to recover my strength.

I drank a LOT of water - almost twice what I normally drink and tried to have a good lean diet with protein three times a day to keep from being too fatigued. I got so weak in my knees that I had to steady myself on stairs.

Drinking tea as a good natrual diuretic was a little helpful. But, this is a hard drug to deal with, and you can only do a little bit to combat the side effects while you are on it.
Fortunately I did not have to stay on it long and saw some improvement in the puffiness after about one month off it. It messed up my metabolism.