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Unregistered
03-17-2006, 10:54 PM
Okay. I have a few questions which i hope you'n's can answer! first is about DECADRON---the "drug from hell". I am weaning off it. I an now down to 3 mg. per day, I was sent home with 4 mg per day after surgury to mt large cerebellam brain met. The radiation onc. recommended 12 mg per day! Whoa!!! I can bareley make it on 3! He's okay with that (goes by the book) but says if I have headaches or nausea to up the dose right away. Okay: now my question: I have noticed that I suddenlly lack muscle mass in my calves. I can hardly get up out of a chair, I am like an 80 year old woman. Also my knees hurt at night like growing pains real bad---only my knees. Does this "rubber feeling" go away after you no longer use DECADRON? What are some of the side effects of decadron? Oh yes, one more thing: my hands shake. Now, I don;t know if it is brain tumor, wbr, or decadron. I do have a deficit in the right side of my body but it has gotten more so. the oncs. suspect decadron.
Okay, now about wbr: I am through with it, had 20 days. I am very tired and most days I am just exhausted. I fell and bruised up my face. I am suppoded to have another mri in three weeks and if all is not "clear" have stereotactic on what's left. Should Igo to a facilty that does cyberknife there are some in the north bay area. I need to make a few plans and look around the corner for the next step. I need all the help I can get and it is much appreciated. Thanks!

pattyz
03-18-2006, 08:18 AM
Dear ?,
You know, I did a search here and got 209 hits of posts re: decadron. Unfortunately, it was not the main topic in many of the posts...

It has been discussed so much because of the truly horrible sides, I believe.

I had nearly all of the below side effects, including cataracts that I had removed nearly a year ago. I don't see flushing of face and neck listed, ie: HOT/RED, but I had that, too. Yes, loss of muscle in lower legs, but eventually I recovered from all sides except the cataracts.

On your focalized tx: If you are in the SF bay area, they should be well equipped and very experienced with the different forms of SRS. I had 3 Linear Accelerator types with the 'screwed on' headframe, but I MUCH preferred the two CyberKnife tx's I was able to do when that technology became available to me.

I think you have the time to do your investigating as well as referrals, unless your upcoming scans show progression.

ok, here's the dec info:

What are the common (occur in 30% or more of patients) side effects of treatment with dexamethasone?

• Increase in appetite
• Impaired or delayed wound healing
• Increased risk of infection
• Swelling of feet or ankles
• Fluid retention, weight gain
• Weakness of muscles
• Increased levels of sugar in the blood
• Insomnia
• Heartburn
• Irritability, nervousness

What are the less common (occur in 10% to 29% of patients) side effects of treatment with dexamethasone?

• Mood swings
• Dizziness
• Headache?
• (long-term use) – cataracts, reduction in bone density

What are the possible late side effects of treatment with dexamethasone? Patients may be an increased risk of developing cataracts or a reduction in bone density if they are treated with dexamethasone for a long period of time.

This is not a complete list of side effects. Some patients may experience other side effects that are not listed here. Patients may wish to discuss with their physician the other less common side effects of this drug, some of which may be serious.

Some side effects may require medical attention. Other side effects do not require medical attention and may go away during treatment. Patients should check with their physician about any side effects that continue or are bothersome.



When should patients notify their physician?

• Fever, chills, persistent cough, sore throat, signs of infection
• Shortness of breath
• Chest or jaw pain, difficulty breathing, a noticeable change in heart rate or rhythm?
• Extreme or prolonged fatigue
• Unexplained bleeding or bruising (bloody nose, blood in the urine, black tarry stools)
• Persistent or severe nausea or vomiting
• Severe or persistent headache
• Extreme thirst and frequent urination (signs of high blood sugar)
• Changes in vision
• Discharge from eye
• Eye pain
• Changes in pupil size
• Rash or skin abnormalities
• Wound that will not heal
• Sudden weight gain
• Swelling of feet or ankles
• Swelling, redness, tenderness or pain in one extremity and not the other
• Joint pain
• Muscle weakness, cramps, or pain
• Extreme mood swings or depression
• Confusion or hallucinations
• Abdominal pain, stomach pain or burning
• Increased in body hair or facial hair

( hugs to you,
pattyz )

mickey
03-18-2006, 09:37 AM
I have muscle weakness BAD

Sue2001
03-18-2006, 11:40 AM
The scientists need to come up with something better to use than Decadron. What a horrible drug. It's been 4 years since the last time I used it and I can remember it like it was yesterday. I don't think I will ever forget it. The worst part for me was the pain in the head and chest, and knee pain. My onc kept lowering the dose for me until it got to a point where I could handle it. I would wrap a warm towel over my knees and it seemed to help the pain a little bit. My husband would massage them too and that also helped. Sorry I don't have any better advice for you.

Hang in there, Sue

StephN
03-18-2006, 12:25 PM
Yes - that drug is one to get off ASAP, but you can not rush it or your pains will get WORSE! Sorry you have to be put through this particular version of Cancer Hell.

I was on Decadron a year ago for two brain mets before and after Gamma Knife. I also had the muscle wasting, but not so much my calves as my thighs and got pockets of fluid above my knees. Had to use handrail and go slowly on stairs. Felt like I aged very quickly!!

There was a lot of work to do to exercise and build myslef back up and get some stamina. My legs were the worst and took several months.

AFter I finished the Decadron, it seems my metabolism just went into REVERSE, and it has been a struggle not to gain weight. Some of us who are sensitive to drugs in general will have a worse reaction to the Decadron as they prescribe the same amount for everyone - like I weighed 200 plus pounds or something!
I told the docs they need to develop some kind of 'scale' for that drug.

Unregistered
03-18-2006, 04:02 PM
decadron: the shaking hands, weak calves.
also, my shape has changed from pear to apple shaped. should i test my blood sugar? no one seems to be paying attention to it. could i eat to minimize the sugar effects.? i am on 3 mg, per daay, tomorrow 2 mg for 5 days, then one, then none, God willing! wbr: i would be so appreciative of anyones experiece. i am so tired, i dont knw if it is decadron, wbr, brain mets or what. I am just wasted.

Unregistered
07-15-2012, 06:27 AM
My wife is on 10 mg. She is having some shaking with one of her hands. Hard to say whether it was the fact that she just had a 7 cm tumor removed or the drug. The first time I really noticed it was after her first dose, so I would put odds on the decadron; maybe with an interaction with some brain issue as the shaking was only on the left side (and the tumor on the right).