How many had steroids after CK and how many didn't?

[sher]

Just wondering how many did have to take steriods and how many didn't after CK. And when could you tell that you needed them?
Sher

[mindyandy]

Hello
I didnt have to take steroids until about 4-5 months post CK. Why? Well I was having pressure symptoms & some numbness. Just wasnt feeling right...ya know. I took them for a few weeks. It didnt really help me much. I can tell ya I dont like being on them...WEIGHT GAIN...I ATE EVERYTHING IN SIGHT AND THEN SOME....LOL.

[ppearl214]

Hey Sher,

I had steroids immediately the week (and 2 after) post-CK.  They put me on Decadron (Decacrap as I lovingly call it) and just like Mindy, I ate my way through town, but also caused insomnia (Where is Vancouver Sue so we can compare notes?) as I had the cleanest house in town at 3am.

In speaking to many radio-docs (including my own radio-onc, Dr. Medbery on the CK support boards, etc), each treating location prescribe steroids at their own discretion, depending on the patient's individual situation.  Like Mindy, some do take (short term) down the road as there may be some edema/swelling down the road as the radiation does its thing.  Looking for extreme enhanced ear/head fullness, enhanced vertigo, extreme hearing reduction, etc may be indicators that a short term course of steroids is needed.  As you have learned, keep an eye on things and if things become overly-enhanced, please speak to your radio-doc and they will know whether steroids will be needed in your case or not.

Hang tough! You're doing great, postie-land is here and I'm really so very proud of you!

Phyl

[sher]

Thanks Phyl and thanks for the help in getting my pic to work. That is me and my 3 daughters... couldn't fit one with all the grandkids...LOL

[fbarbera]

I took steroids a couple of times after treatment -- once around 3 or 4 months after treatment, and then again around 6-7 months after treatment.  I was experiencing intense episodes of dizziness and head pressure.  I took the steroids to get relief from the symptoms.  They certainly helped in alleviating the symptom, but they have horrible side effects, one of which is to increase your appetite like you can't believe.  I gained about 10-15 pounds in three weeks (and that's after more than 20 years at practically the exact same body weight).  My own view is that it really is best to avoid these drugs if you can.  If, like me, your symptoms are really rough and you want relief, make sure you ask your doctors to prescribe the lowest possible dose.  If you are interested in more details about this, I describe my post-treatment experience in much more detail in my website below (in my signature block).  Be well, Francesco

[Nancy Drew]

Yikes . . . Now I am really scared of the steroids.  I am about ten years out from an eating disorder where I lost 60 pounds and am doing well.  I did, however, lose another 10 pounds while researching treatment options back in June (the AN diet . . . obsession with the computer . . . keeps food out of mouth!!!).  I took prednisone for three days about 20 years ago, and it sent me into a deep depression.  My doctors have always told me to list it as an allergy on my med forms.  I cringe at the thought of eating, not sleeping and getting depressed should I have to go the steroid route.  Hopefully since I have a tiny AN, I won't have to worry about too much swelling or other problems.    Nancy

[BDB]

I had decadron for two weeks afterC CK,then about 3 mos. later,started having hedaches,severe fatigue,and spasms on the side of my face.Put back on decadron for couple weeks,got off of it spasms returned,put back on it for about 3 mos.This was a terrible expierence,constantly ate,face swelled up,acne on torso,hump on back,and felt extremely sick and tired all the time,I slept all the time and if not sleeping eating.I talked with CK center nurse and was told decadron energizes you and ck treatment wouldn't cause this,said to see my GP.My GP wasn't familiar with CK side effects,and had me contact neurosurgeon,his nurse prescribed some anti seizure drug,which did nothing,so I quit taking it.After 3mos.of decadron had enough and tapered off,bad side effects including extreme pain in legs and hips,couldn't walk.called neuro he was out of town,his associate called back and said it couldn't be from steroids,Wrong! I am now going on almost 8mos.post CK,and am feeling 100% better!


I have found out steroids can have many unpleasant side effects,including severe bone pain.I had taken Prednisone in the past with minimal side effects,so you just don't know.Although I don't believe I will ever take decadron again,It may be a necessary evil or even a lifesaver for some.I would still listen to my doctor,but would definetely,get a second or third opinion if something doesn't seem right.

Although I still have facial spasms,I would rather tolerate these than endure the hell decadron put me through.

I would also like to thank Dr.Medbury at the CK forum for his valuable insight!

At 6mos.MRI shows no change in size of tumor,and my balance seems slightly improved.

I also would like to thank Francesco for his story,It gave me alot of hope things would eventually get better,by being able to read about his expierence.I also was dissapointed by my CK centers follow up. Bruce