New guy in town (Glioblastoma GR. 4)

EJM68 · New User Joined: 07 Feb 2008 Posts: 5

Hello all:

Just joined this and I thought I'd share a little of my story. I'm Ed, 40 yrs old and was diagnosed on my 40th birthday in January of this year. I've already undergone surgery (Jan.23) and started both chemo and radiation treatments Feb 19th.

My first symptoms were a numbness in my left leg from the hip down to my toes. Along with this, I would get spasms in my same leg approx. 8-10 times a day. After surgery, the spasms have decreased to 3-4 a day now (still adjusting my Dilantin levels) but my leg is still experiencing the same 30% numbness from hip to toe.

I'm a fighter, but also a realist. I've asked my doctors what kind of time frame I'm looking at and they have both given me 2 different answers. One says 1.5 yrs and the other says 2 yrs. I realize that these time frames ARE quite close together but I guess I'm just looking for the best case scenario given my situation and diagnosis. I have a 6 year old daughter who I need to plan for. (She is only with me part time) and otherwise live on my own.

I'm a supervisor at an auto manufacturing plant here in Ontario Canada.

Would like to hear from some folks on thier stories and/or advise.

Regards,

Ed
_________________
Ed McDade
Glioblastoma Grade 4
Diagnosed 02/05/08

brainman

Oh, Ed, I am so so very sorry about your diagnosis. I have a long history with gliomas and feel very much for you. You can read my stories by going to the links in my signature block.

I was first diagnosed with a grade II glioma in 1992. At that time I had a 3 year old son, a 9 year old daughter, and a 10 year old daughter. My cancer did recur in 2005 as a grade III. I went through surgery, radiation, and chemo and so far there is no sign of cancer.

My mother had a GBM in 1998. Unfortunately, she died within two months of her diagnosis. It was already too large for any type of treatment.

Unfortunately, there have only been a very few people who have survived more than 2 years with a GBMIV... very very few. Having said that, here is my take on prognosis: If my original prognosis had been correct, I would have died at least 5 years ago. I like to know my prognosis but only in order to set realistic goals for the things that I still want to do with whatever time I still have left... my "bucket list" if you will Smile

. I am sure that top on your list are things related to your daughter. Here are a few suggestions:

Obviously, make sure that your will takes care of her future physical and monetary needs. This is a given, I am sure.

Find was to spend quality time with her NOW... don't wait because in the future you will have less and less energy.

Find ways to help her remember you as she grows. Here is a link to a post about someone facing almost exactly the same thing you are and what he did before he died.

http://cancerforums.net/viewtopic.php?t=8828

You might have other ideas to add. The point is, you do not really know how long you have left so make the most out of every day. I know, easier said than done... I have been there.

You and your daughter are in my thoughts, heart, and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

EJM68 · New User Joined: 07 Feb 2008 Posts: 5

Thanx so much Jim....I will certainly keep all those things in mind. I am also thinking of video taping myself for my daughter (just to explain to her when she is older what happened and why daddy isn't around) I'd also like to tape myself and have each tape given to her for memorable occasions such as bithdays, proms marriage etc.

Thank you again....I'm off to look at the link you sent me.
_________________
Ed McDade
Glioblastoma Grade 4
Diagnosed 02/05/08

brainman

Ed, that is what Sam did. He also wrote 18 years of birthday cards. Anything to help your daughter not think that you abandoned her would be great. I do not know about your faith/religion, but if you have some religious occasion that is important, make a video of that too. You might even want to start a journal of things you remember that would be important to your daughter:

How did you and her mother meet? What did you feel when you first saw your daughter? Where were you living at the time?.... etc.

I have an undated journal that has a question like that on every page called "A Father's Legacy". Still working on it Smile

.

PS One last thought, make sure that whatever to videotape gets put onto a permanent data storage: CD, DVD, or best external hard drive. You want those memories to last a long time.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

ksplat

Hello Ed
Welcome to our forum! I'm very sorry that your diagnosis of GBMIV has bought you here, you are in my thoughts & prayers.
My Bro - Mark - & your story sound very similar. He also has a R side tumour which effected his L leg initally (a heavy sensation, he said it was as though he had caught his shorts on the scaffolding he was working from at the time). Heavy sensation was then felt in the L arm. He went to his Doc believing he had suffered a stroke. Less than a week later he was diagnosed with a BT. After biopsy/pathology a GBMIV was confirmed. This all happened in Feb 07 (just over 12 mths ago). Mark was a very fit, hard working, Plasterer/Concretor who is now only 47yrs young. He was told that he had to stop work immediately because of the serious nature of his condition.He has a loving wife, 3 adult children & 2 baby grandchildren.
Since biopsy (Feb 07) he has had a total of 4 brain surgeries/resections. His latest one being 2 wks ago. The B------ keeps coming back & Mark keeps having it debulked! Mark's question to surgeon early on was "how often am I able to have this thing operated on?" The surgeon told him that Mark would get sick of it before he did!
Mark was started on Temodal & Radiotherapy. He last only 4.5 wks into 6 wks of radiotherapy as the tumour grew very aggressively & Mark was having regular seizures, which required hospitalisation several times.
Mark has been disabled since his 2nd surgery in May 07. He lost all feeling on his L side & although he has had intensive rehab he hasn't regained any movement. He has been in a wheelchair since May 07. During this surgery Dr discovered a large blood vessel with tumour involvement & we believe this was the cause of his disability.
During his latest surgery Dr placed Gliadel wafers (chemo) in tumour bed. This is a very new treatment in Aust & has recently been subsidised by our Federal health system. Mark is still in hospital doing daily rehab to regain his confidence & balance. Apparently he's been having focal seizures & giddiness with "new" chemo. Dr has advised that his current symptoms are due to the chemo wafers & has assured Mark that they "are working". Wafers have a "shelf life" of 60 days...so Mark won't require additional chemo during this time.
Mark has been taking Temodal for most of the past year. He was on a daily dose for the first 6 mths & then after on a monthly cycle of 5days on 23 off. He also takes Keppra/Dilantin, Clexane (for blood clots) & has had intermittent doses of steroids.
Mark is hoping to be home by the weekend & is working hard at rehab to "get on top of things".
Any questions you might have I am happy to help! Reply to this topic or feel free to PM me anytime.
Your tribute & journal for your daughter is a wonderful idea....I am so sorry that you find yourself in this difficult & challenging situation. Movies of yourself for your daughter will be something to be cherished by her forever. Write her notes & letters as you think of them too.
I can't begin to understand the emotional & physical demands that have & will be placed on you during this battle but I pray you will find the support & advice you need here on this forum.
Thinking of you, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

jenugl

Hi Ed. I'm so sorry to read that you have been diagnosed with GBMIV. My partner was diagnosed in May 06 with a GBMIV (right temporal lobe) and was given a time frame of 2yrs. He has had operation, chemo (temodol) and radiation. His surgery was a total resection and as of his last MRI which was in January there is no sign of tumour regrowth. How did your surgery go - were they able to remove all of the tumour? We live each day as it comes and make the most of life and all our family and friends. Enjoy every moment with your loved ones. I am praying and thinking of you while you go through the hardest battle of your life. As you can see already - this forum is a great place to get answers, rant and rave and share your feelings. Thinking of you. Love Jen.
_________________
Love to all. Jen.
_____________________________

Partner of GBMIV survivor - so far.

http://cancerforums.net/viewtopic.php?t=9502

kad · New User Joined: 27 Feb 2008 Posts: 4

whoa this is weird

you worked in an auto mechanic place of some sort

my tim was a bus mechanic for 32 years and now at age 47 is dying, there isn't anything i can do to keep him with me longer but it is an odd

we also had a friend that died of a brain tumor who was a 25 year auto mechanic as well

i wish you the best, we will think of you

Ivaras · New User Joined: 10 Mar 2008 Posts: 4

Hi

My husband just got diagnosed at 43 years old. I suggest you buy a book called Survivng Terminal Cancer by Ben Williams who got diagnosed in 1995 and is still alive.

Everyone is different don't listen to your doctors regarding prognosis. No one knows when they will die onlly God.

This is the hardest thing anyone can go through specialily young families, but it's the deck we've been dealt and we have to try our best to deal with it.

This ordeal began in our family Feb 12 2008. My husband is extremely depressed. I have to try to keep it together for my 9 & 10 year old

I'll pray for you. I pray for everyone now. Your whole perspective in life changes when this happens.

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