unscheduled MRI today

[Timjk]

 For those of you who remember, I was asking about the side effects of FSRT.. My main concern was swelling of the tumor. Well, this past week the symptoms I was having got much worse.. Dizzyness..
light-headedness.. borderline vertigo.. I talked to my "radiation" doctor's main nurse on Monday.. She in turn talked to my surgeon's main nurse who called me yesterday and I went in for an MRI this morning.
It will take a couple of days to get the official report but the prelim opinion is my symptoms are in fact being caused by tumor swelling.. I started Decadron this afternoon.. 2 GM. twice a day thru the weekend.. I am to call them Monday to let them know how I am feeling.. Here is my question for all you Decadron users.. How long were you / or have you been on it ?? The people I talked to today insist I should feel a change in just a couple of days if it is going to work at all... Does that sound right from personal experience

Tim

[ppearl214]

Tim,

I'm sorry to hear you are having a rough time of things.  If I remember correctly, your radio-treatment was fairly recent.... and sounds about right for these type of things to crop up.  The "Decacrap" can be interesting... plan on insomnia...... and, depending on how long you are on it, should be tapered off (if they keep you on it for an extended period of time.... if only for a few days, tapering should not be necessary).  Will give you the "hungry horrors" as well.

I hope you feel better real soon.  Swelling can occur post radio, typically in the first 6-9 months range... you sound like you are on target for it.

Hang in there!
Phyl

[Sheryl]

Hi Tim - my husband had CK done October 1, 2007 for a meningioma regrowth (first removed by surgery in '04).   He was on a very short course of Decadron right after the CK just in case and then did very well until Xmas day.  He had what was felt to be a focal/partial seizure - now remember a meningioma is different from an AN and in a completely different area.  An MRI at that time showed swelling around the tumor (which had remained stable) and he was put on anti-seizure medication and Decadron.  The Decadron, again, was a short course but upon sending the MRI to his radiation oncologist who did the CK, it was decided to put him on 8 mg/day and taper very slowly.  As of today (4/16), he is down to 2 mg/day and the "Decacrap" has caused him numerous problems.  His nights are mixed up with his days, he's gained about 20 pounds (it's the first time in 40 years of marriage that he's happy when I pick up "junk" foods at the supermarket), and he has been quite swollen (some relieved with a diuretic).  Please remember that everyone is different and he's always been sensitive to different medications anyway.  The good news is that the last MRI he had in mid-February showed the tumor to be stable (this was growing at about 1 mm a month before the CK) and upon sending the MRI's and reports to two other docs in the field, they felt the tumor had not changed; one thought it had even decreased a tad but the swelling was still evident at that time. 

Please keep us updated on your progress.
Sheryl

[sgerrard]

Hi Tim,

 Before I was diagnosed, one doctor put me on a six day steroid treatment, starting with 6 pills, working down to 1. This was on the theory that I had a plugged up middle ear (I wish!). So there is some expectation that steroids can have an effect in 5 days, if not 2. It also seems to me that people who started steroids for swelling report some effect within a week, anyway. Also I have read that in some cases of sudden hearing loss which are not AN related, treatment with steroids restores hearing within a week or two.

Sorry to hear about the swelling issue, hopefully the steroid will help, and the swelling will go back to a minor annoyance.

Steve

[jb]

Tim,
Decadron worked very quickly for me too.  My main problem was headaches and they were gone within 2 days of starting the med., but docs also had me at 12 mg for several days before tapering.  My experience with side effects was worst during the tapering phase, having pretty much the same issues already mentioned.  It can be pretty rough on the stomach too, so my doc prescribes it with Pepcid or something similar.

Good luck,
JB

[MaryBKAriz]

Hope you are doing okay, Tim. You are in my thoughts!

Mary

[Timjk]

Just an update on my Decadron treatment.. I am on day 3 (2 MG. twice a day).. I feel a lot better already.. A little woosey last night but that is a huge improvement from 3 days ago.. I am taking Ranitidine along with the Decadron for my stomach..

I am to call my doctor Monday with a progress report..

Tim

[jb]

Great to hear the Decadron worked for you!  Hopefully not too many side effects and you won't have to be on it very long.

[leapyrtwins]

Tim -

I'm glad to hear that you are feeling better.

I hope it continues,

Jan