Me On Steroids.....

[Fay A.]

Okay.....here it goes:

Have you ever been in a fight where the threat of physical injury was real and imminent? So frightened that your heart is pounding in your chest, your mouth has dried up, and your whole body feels like you should be running for your life? You have the shakes so bad you feel like an earthquake is going off inside your body.

Usually, when this happens, we are in a "fight or flight" situation, and the naturally occurring steroids produced by your adrenal glands are burned off by fighting or running. It's a stress hormone...

Now imagine what it is like when your body is under the influence of a stronger compound that is at a constant level, and you have no physical way to remove it from your system. We're not talking about the minutes it would take to fight or run away from one. We're talking about 24-7 for as long as you take the drug....no getting away from it.

If there were another drug available to treat the brain inflammation/allergic response the docs would be prescribing it. Because it is well documented that steroids cause exactly this kind of reaction in those who are taking it. What the docs may be able to do is lower the dosage. I believe it was Karen from California who took it upon herself to lower the amount of steroid she was taking when she had brain mets, but she had notified her physicians.

I have an adult child who was caught in the moment of my steroid induced meltdown last year...She is never going to forgive me.

So now, when I have to take the drugsbecause they will keep me alive while I undergo procedures or treatments I warn everyone that is around me that I'm on steroids and ask that they "remind me" that I'm not really that upset over anything in specific, and that it's the drug. It helps for a few moments, and sometimes even longer.

I don't envy any family member who is living with someone who MUST take these medications in order to survive the cancer, the treatments, the diagnostics. (I've also BEEN the family member who was the focus of a few steroid induced rages.)

I just thought that those of you who have never had to take these drugs might appreciate a little insight into what these medications can do to the person who is taking them.

And Karen, I thinkyou really should take Faith to your Mom's. She's too young to understand what is happening. I'm just very, very sorry that this is happening.

[paddy]

Thanks Fay for this reminder. We know you Guys can't help it and the pity is we as caregivers can't do much to help you either. That is where the mental torture comes in. I hope your daughter reads your post, she may understand why the rift happened. God Bless You, Paddy

[karen335]

Hello my friend Fay,

I know exactly what you are going through. It was the demon from He** inside your body. You have no control over your actions or re-actions. There is no gray area, it's either black or white and don't interrupt me when I am talking let me finish or there's He** to pay for the interupter. It happens without notice and is awful for anyone around you. The cause of these actions is a steroid named DECADRON. It is so wicked and is something I don't want to ever experience again. The doctors put me on this stuff and basically forgot they prescribed it to me. My Radiation Onc. told me how to get off of it. I would never take anymore than 3mg total per day. The doctors seem to think more is better, like 20mg per day. That is not true, if a person is sensitive to meds they have a bad reaction to medicine. We all know our bodies and how we react to meds. Less is better, you can always raise a dosage if it's not enough. It's sometimes hard to come down or have your body eliminate a drug from your system which in turn can cause overdose. Proceed with caution on higher doses of medicines. They try and follow as they say it, protocol. Fay, my heart goes out to you. If you need to talk, please call me or PM me and we'll talk. Special prayers and thinking of you...

God Bless and lots of hugs,

Love Ya,

Karen

[Remembering Dave]

Thanks, Fay. I appreciate the description of what the steroids do to you. I KNOW that they do SOMETHING to Dave that makes him unable to control anything about himself because I witness it - he can't stop eating, yelling, he can't sleep, he can't stop certain thoughts . . . he buys too much junk food and then eats it like there's no tomorrow. But he's been unable to describe to me exactly what it is that he is feeling.

I try to remind him that the steroids are making him nuts and ask him nicely to try to control himself but usually that just makes him rant more.

He told me this morning that he's been tapering off the decadron and today he is not taking them any more. I think I should fax a note to his oncologist to alert him to make sure he's doing it right and that he really doesn't need it.

Meanwhile, I'm trying to limp through this week and next, because on Friday August 6 we fly to Montana and will be with his whole family there, and then his parents are driving to Virginia to stay with us again for the duration of Dave's treatment, so they'll be here around August 21.

and please rest assured, Fay, that I am trying as hard as I possibly can to be tolerate of him. It's one reason I come here to vent.

Thanks everyone,

Karen

[Pamela]

As I've posted before, my Dad had a SEVERE reaction to Decadron that left him incapacitated (no muscle tone whatsoever). I think what bothers me the most is that no one ever told him or us about the possible side effects. There was no warning!

Dad was taking 16 mg/day for 3 months. Because he had brain mets, the oncologists blamed all his symptoms on the brain lesions. It was horrifying to watch what a mean-spirited person he became. He yelled and cussed and threw things. He couldn't sleep more than 2-3 hours at night. His blood sugar stayed between 300 and 340 all the time, so his diet was restricted. That ticked him off because he was very hungry all the time, and mostly for sweets.

We thought it might be the Decadron, but the oncologists kept telling us it was the brain cancer. Finally we insisted that they do an MRI, and sure enough the brain lesions had shrunk considerably and were NOT the problem. They quickly ramped Dad down off Decadron completely and all his "symptoms" disappeared, except by then he had steroid myopathy and the muscle tone was gone. We were told that a healthy young person who had suffered that extent of muscle damage would take 6 months of rehab to recover. My dad is 77 and weakened by cancer.

Now Dad is lying near death. He likely won't live more than a few more weeks at best. Decadron stole his chance to take chemotherapy. He was just too weakened by the Decadron to risk it. Decadron stole his mobility. Decadron stole his peace of mind. Decadron stole his dream of one last fishing trip. In effect, the drug that was supposed to help my Dad stay alive actually shortened his life.

The doctors should tell you what to expect, what to look for. They shouldn't let anyone walk blind into this. They should start with the lowest dose and work up, not start with the highest dose and then go down.

Sorry for the long message, but I'm very emotional right now. I'm losing my Dad and there's nothing I can do to stop it. I want to scream and cry and fight. I see the cancer as an alien monster that has invaded Dad, and I want to rip it out and stomp it into the ground. Crazy, huh? I just can't stand watching this happen to him.

Thanks for letting me post this. It helps to put it in words.

Pam

[Elaine]

Pamela

I am so disheartened by what you wrote, angry at the lack of care shown your father and by extension so many other lc sufferers. And I feel a great deal of compassion for your dad.

I kind of know what you mean. Everything "wrong" with us is attributed to "the disease" according to too many Drs. They may be right, but they just seem to leave it at that--nothing offered that might alleviate without causing more harm. To me it sounds, if not criminal, then surely immoral for your dad to be on that high of dose for that long. Yes I recognize that steroids will reduce brain swelling so that a person might live while undergoing WBR or other brain treatment, but perhaps more attention needs to be paid to the actual dose needed. I know they don't often tell a person a bout side effects. And if you ask, they give a funny look like you are questioning their very soul.

Sorry for the rant. I just feel so sad for your dad.

[Remembering Dave]

Pamela,

I'm so so very sorry for what is happening to you and your Dad.

And to be honest with you, our situation is nowhere near that bad - so it's a wake up call to me. Things could be worse.

My heart is breaking for you and him. I wish he could go on that fishing trip.

God Bless,

Karen C.

[SJAS]

Fay, Karen, Pamela & everyone,

Thank you for a real education tonight. We have not had to face steroids yet, but we have gone thru WBR. It seems like every possible complication gets thrown into the mix, so this one may be on the horizon. I will now be in a much better position to ask some questions if it does.

I am so sorry for all you are going through with this. I pray that things will settle down soon and the real person inside will surface once again.

[Guest bean_si (Not Active)]

Fay, I sure hope I don't have to go on steroids. I'm mean enough already.

Pamela, so sorry to hear what happened to your dad. It's just shocking to see how little some medical personnel know and care. What an awful experience for him and the family.

Karen, It's VERY important that he tapers off the drug exactly as directed. When I had to take Cortisone for my sciatica, they doctor gave me a packet where you took one the first day, then two, up to seven and they started going backwards - 6 then 5, etc.

You sure would think they'd come up with another treatment. These steroids sound gosh awful. I think I must have been on a lower dosage.

Cat

[MSWKitty]

During my father's chemo sessions, which were once a week, he had to take two decadrons (don't know the mg) the day before chemo, he got it in his IV during chemo, and then two the day after. Didn't really notice any changes in his mood or personality. He was put on Prednisone for an extended amount of time though. Has anyone had any experience with this steroid? He seems a bit depressed (but that could be from a number of things, I guess ). Also, when you get off of a steroid, and he was slowly weaned off of the Prednisone (he's off of it now), do you feel more tired than usual? He seems to be tiring a bit more lately.

Thanks.

Kitty

[Addie]

My last chemo cycle, after the first day where I THINK I got 20 mgs. of IV Decadron prior to the chemo.....I showed up on day 2 in tears. Just an emotional mess. So....for days 2 & 3, they cut the steroids to 10 mgs. But I had the weepies for that whole week, and thru the weekend. But I only get the Decadron for those three days of chemo infusions.

I have been on a low dose of Prednisone since last August...for polymyalgia (muscle problems) and on chemo days I do NOT take the Prednisone. But this week, I've had some weepies again. It seem more common for me than to have any rages or get b*tchy...but it still is not a lot of fun as being on the verge of tears all the time make me feel weak, or as if I'm not really fighting this d*mn disease!

My internist (who is SO wonderful, I called him first about this) says he's yet to have a patient get to this point in treatment where they didn't suffer SOME degree of depression...and he recommended I try Zoloft. But anti-depressants don't agree with my system...so I'm holding off for the moment. I also feel like I've got enought poison going into my system without adding yet another drug to the mix.

I do know that any steroid must not be stopped abruptly....but I wonder if it's a bit different when you get it in IV form? Many years ago I was on Prednisone.....20 mgs. daily....for many months and had NO side effects. But 20 mgs. in IV form, last cycle, made me a blubbering mess for a week. Because of this...I'm sort of NOT looking forward to this next cycle which starts on Tuesday.

Kitty, I don't know that Prednisone would cause fatigue....but depression and fatigue would more likely go hand in hand, I would think.

[Cindy RN]

I have been fortunate-the only steroids I have had have been for pre-meds before the chemo-I do recall being up all night afterwards and could not just sit still!!

MEDICAL ADVICE--from the nurse part of me-DO NOT JUST STOP TAKING THE STEROIDS!!!!! This is a hormone and when you are taking them as prescribed your body does not make as much of it's own because it senses the increased levels. If you stop suddenly you can suffer severe side effects-extreme could be siezures. ALWAYS taper off this drug. The DR will tell how many to cut out each day til you are off.

This gives your body time to realize it needs to produce more on it's own.

Fay-Try writing your a daughter a card telling her how you feel. If that doesn't work send one every month-she will get the message soon enough and you will know you have done all you can.

Love Cindy

[Remembering Dave]

Ok, everyone - Dave is off the steroids, he swears it did it the right way and the way the doctor instructed him to . . . he's been on decadron before so I have to trust him on that.

But his mood is completely different. He had a chemo on Wednesday which probably has something to do with it as well - but the yelling is gone, the harping on everything I do or say is gone - the total psycho behavior is gone and dear sweet Dave is back. OK, he's not so sweet . . . but actually he's a little sweet today and yesterday so I'd say the change in behavior is drastic.

I'm with whoever above just said you'd think they'd find another drug to do what these steroids do. I guess they work so well at their prescribed purpose the medical community doesn't care about the side effects? Dave said he will never take decadron again. I sure hope he doesn't HAVE to make that decision for real.

Again, I'll say to you Fay, that I would never hold a permanent grudge against Dave for his steroid induced behavior. I just didn't know how much longer I could take it. I wish your daughter didn't have a grudge about it but she is younger and it's harder to realize that a person just can't help certain things, when you're young and fairly inexperienced in life.

Take care everyone,

Karen

[berisa]

Yes, Decadron is a terrible drug and if you remember, my dad was suffered from delusions and had the suicide intention etc. He feels very hungry all the time as steriod really makes one feel hungry.

But, try the best to avoid sugar. Try to be silent and take all their emotions as much as possible (I know it's difficult as we are human, we have emotions as well). They are suffered a lot already and they are too precious to deserve our patience. Besides, they are innocent victims and they cannot control by themselves. I just know LOVE and PATIENCE can make us through.

Karen, I am praying for you & Dave, and Faith. Especially Dave.

[mamasbabygirl]

When you say steroids, are you talking about the ones that are given to my mom with her chemo? She has been very aggressive, so I am wondering if that is what it is..

[mhutch1366]

I had mood changes with the prednisone by mouth.

I seem to remember a lot of sleepless nights.

I seem to remember being unaware of the mood changes until my oncologist pointed them out to me.....

I do remember having dreadful fits of weeping......

this is on oral steroids, mind you, for the breathing problems/inflammation induced by respiratory viruses after my treatments and surgery were finished.

Never got over 50 mg prednisone/day. x 4-7 days and then taper by 10 mg/2 days

Hate the lousy stuff, but it kept me out of the hospital when my airway and lungs/bronchioles were inflammed... and I couldnt seem to get air...

It's the devils' own stuff, but it is very effective.

XOXOXOX

MaryAnn.