Ependymoma?

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Does anyone out there have a loved one with an ependymoma?

My husband was diagnosed with a grade 2 ependymoma in his left frontal temporal in Dec, 04. He has had two surgeries, both one year apart. The tumor was originally 4 cm, located on his speech center. 80% was resected. After exactly one year it grew back, plus some. NS got 99% this Jan, and husband went through 31 rounds of radiation and oral chemo ... Temodar. He is now stable but has much damage due to tumor/surgery/radiation/chemo. Looking for others to share their stories with us. Looking for support and wanting to offer support to you.

Thanks so much ~~
Joy

murphythemoose · New User Joined: 05 Aug 2006 Posts: 3

hey I had the same thing...Grade 2 ....RH frontal temporal lobe...doc got all of it in Jan of this year...no serious side effects...they are doing a wait and see approach as far as treatment goes....just waiting for me....kinda scary though...talking to someone who has this would help...

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Hey Murphey,

Nice to meet you. Wish it was under better circumstances though. I would be happy to correspond with you. Hubby has had tumor for 20 months now. He had his last surgery this Jan too ... They removed 99%. We followed up with 31 rounds of radiation/temador, which is an oral chemo. Sounds like you're going great! Where was your tumor located?

Hope to see you again soon,Joy

murphythemoose · New User Joined: 05 Aug 2006 Posts: 3

Hi...It was in the RH frontal/temporal lobe. I think something about the 3rd ventricle was listed in the notes I got from my doctor. I didn't really ask a whole lot of questions. I just go down south, see the doc quickly and head back home. The hospital I go to see my neurosurgeon is 10 hrs south of my home town. I didn't really know a whole lot when I was diagnosed. One minute I am suffering from headaches, the next minute I am on a medevac plane heading down south! I remember very little about things for about 2 months before they took the tumor out. Now I am ok...I get headaches. I am hoping they stop soon so I can get back to a normal life...but I guess life will never be the same eh?

murphythemoose · New User Joined: 05 Aug 2006 Posts: 3

There is a website for people who have ependymomas of the brain. I just joined and I find it helpful. www.braintrust.org Just find where the ependymoma website is a sign up!

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Hi again ... I'm a member of that group ... and it's a GREAT group! I've made some wonderful friends there. I hope it will be extremely helpful to you. I go by seekingodsfavor there.

My husband's tumor was left frontal temporal/settled on his speech center. ugh! I sure miss his beautiful voice.

Sounds like you have suffered from seizures? Hope all goes well for you Murph ... and looking forward to getting to know you better.

Joy ... from Texas

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Murphy, what handle do you go by on the ependymoma mailing list? If you'd like to mail me I go by seekingodsfavor@yahoo.com ... Thanks!

CTel · New User Joined: 02 Nov 2006 Posts: 1

I'm in the UK. My son has an ependymoma on the brain stem. Diagnosed at 15 months. He's now nearly 3 years old. He's had neurosurgery (partial resection), chemo (baby brain protocol - a mix of cisplatinum etc), radiotherapy, more chemo (etoposide) and is now going to have more surgery to try to fully resect.

Interested in what chemo or other treatments others have had.

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