ependymoma reacurance

[patty]

what are the chances of a regrowth of a ependymoma? My husband had it removed almost 14  months ago and he has apointment next week for 1 year mri and check up. But I was wondering about regrowth and when they happen. My husband is 58 almost 59 and is doing ok. He takes 3000mg gamapatine 600 mg larica and 2 tremadal ever 4 hours (sorry about spelling).But as everyone else is we worry about it comming back. so when  do they come back?

[jasonohio]

it depends on what type of ependymoma you have, and how much of the tumor was removed during surgery.

[billanschell]

What Jason said. Dr. Jallo said a few years ago that he had never seen a fully resected ependymoma, other than a myxopappilary one, return. And he's probably seen more spinal ependymomas than any other neurosurgeon.

[sharma Lee]

I have to check in with Jallo! I've had two ependymomas. The second ependymoma was discovered about ten years after the first,and I had cyberknife to remove it. Now I'm being watched for a possible third - which would make this beyond bizarre. Keeping my fingers crossed for me and everyone. I was not expected to have a second, so if the tumor was fully removed, I'd say your husband's chances are good.

[pringleman]

Hi, I had my Ependymoma partially removed 17 months ago and tomorrow I have pre-admission to have the regrowths cut out.Operation on Friday (2 days time) All the specialists were surprised that it grew back and that it grew so fast. 8mm was left in. Now ~50mm x 10 x 10 to come out. I think your husbands chances are good. I could feel the change for the last 5 months and could not convince anyone what was happening.

Best Wishes

[leks]

all the best for your upcoming surgery pringleman, ul be in my thoughts.

[pringleman]

Hi Leks.

Surgery went well - I can still move but have some still left and have sort 4 opinions and all say I should have radiation. The treatment is 50Gy (Grays) delivered 2Gy a day for 25 days. Is this similar to what you had? The specialist reckons the spine can only take 50Gy before damage occurs. My research suggests people only get 30 to 40Gy. My appointment is for 8th January. The big change is the tumour is now Grade 3 where as it was considered Grade 2 to begin with.

Cheers,

PG

[leks]

hey pringleman

my rt was also 50gy, spread over 28 fractions, so 1.8gy per day, 5 days a week. originaly they were going to irradiate my whole spine and brain, eeeekkkk, but then they chose to only zap the area of current and original tumor.
c3-c5
i too was told that 50gy is the safe limit for the spinal cord, any more and you run the risk of damage, my research suggests the same, in the USA and UK at least they have this 50gy approach. but hey, this is the spinal cord, any radiation will do some damage IMO!!

man that sux that the tumor is a grade 3 now, no wonder everyone is suggesting rt. hopefully the rt shrinks what little bit is left, do you know how much they left?

if you have any questions, ask away.

[pringleman]

Hey dude,

Seems like we are on a similar path. I was going to have the whole cranial spinal treatment as well; I even got measured and tattooed last week for it and man what a painful experience that was - face down (which I have not done since the op) with a block of hard plastic to rest my nose on for 18 minutes. Nearly hit major panic several times (trouble was my normal meditation is to focus on my breathing at the top of my nose and that was were the pain was.

But a lumber puncture on Wednesday showed the CSF to be clear of malignant nasty cells so now it is just the spine to be done. Got a week to gather my strength.

On one of your other posts you talked about oramorph. What is that? And did it have the dreaded constipation affects like the other opioids? It is probably too much information but yesterday and today were the first of a non assisted bowel movement. Happy days. Spinal damage and bowel stopping drugs do not mix. Had to have an enema the previous week as the whole system was backed up in warp drive and was actually more painful than the tumour (and that is saying something).

I too am more spastic when it is cold. Do you also have worse problems first thing in the morning? Seems I can only sleep for 7 hours otherwise I start having spasms in bed - it is the only time I am glad my big cycling thighs have vanished as I feel they could have broken my bones in these daily thrashes.

Sitting too long like I just did will also bring on a dose of the Peter Garretts (lead singer from the band Midnight Oil who used to dance the way I walk post a long sit down).

Did the radiation kill the 20% they did not remove? That seems a lot to leave in. The post op suggested that they left 7mm axially x 7mm craniocaudually (what ever that means - I guess diameter of 7 by height of 7mm) but I am waiting for the results of the MRI I had on Monday as to confirm. Like last time there is debate with the surgeon, the oncologist and the radiologist disagreeing. I think the radiologist will be right and there is this small residual. The others think it is an artifact of the operation.

Got to go, pringles are getting unbearable.

Cheers

[pringleman]

Hi again Leks,

In the end they changed my treatment and I too had 28 doses like you. I suspect my oncologist is following your posts!

Cheers