I have a GBMIV

paolo · New User Joined: 20 Oct 2007 Posts: 3

I was diagnosed with GBMIV in 1/07 after a grand mal seizure. The tumor was sitting on the motor strip for my left side (fortunately I'm right-handed). I had surgery to remove as much as possible without causing paralysis, then began temodar and 6 weeks of radiation, continuing the temodar thereafter.

In June, my oncologist added tomoxofen (sp?), as it had been effective for some in an off-label application along with temodar. Unfortunately, none of the therapies up to this point were proving effective in shrinking the tumor, although they seemed to be inhibiting further growth. At the same time, edema and general swelling of the brain were causing progressive loss of motor abilities in my left arm and leg. I also took three different anti-seizure meds over the entire time.

In August, we consulted with oncologists at the U. of California, San Francisco (we also had done this at the beginning of my treatment, when they agreed with the course proposed by my local oncologist), who after reviewing all of my MRIs recommended changing my chemo to a combination of avastin and iranotecan. Wow! After 6 weeks, the 4cm tumor had shrunk so much that you could not see it on the MRI, even with the contrast-enhancer, unless you knew exactly where to look. In terms of edema and swelling, my oncologist said my brain now looks entirely normal. The radiologist's report on that MRI referred to ". . . dramatic improvement." My physical therapy is now producing noticeable results, and seizures have become very infrequent, and mild and brief if they occur.

My wife and kids (all adults) and I have all researched GBM and are under no illusions, but all this has made us very happy.

A couple of other notes, for whatever they're worth depending on your belief systems: I've been able to maintain a very positive attitude throughout all of this (and have seen a therapist periodically to help me think things through - a great resource); and I've had amazing and humbling continuous support, love and prayers from a large group of friends and extended family. I can't discount the likelihood that all of that has helped.

My best thoughts and prayers to everyone in this forum.

Paolo

brainman · Posted: Sat Oct 20, 2007 7:04 pm Post subject: Re: I have a GBMIV

Paolo, I spit your message away from the topic where you originally posted it and started a new topic for your story. This way, people can respond to you without "hijacking" the other topic.

I am very sorry about your GBMIV. I to had a glioma but it was a grade III. My mother died of a GBMIV in 1998, two months after diagnosis. So I am thrilled to hear that you are doing so well! I do not want to sound like a "cheerleader"; you know how bad a GBMIV can be. However, not to be able to see it on an MRI is very good news Very Happy

.

I wonder if you have the 1p/19q gene deletion that makes your cancer more likely to respond to chemotherapy? Have they done a genetics text on you? I don't guess it really matter; you are the real proof Wink

You and your family are in my thoughts 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/

jenugl · Posted: Sat Oct 20, 2007 11:31 pm Post subject: Re: I have a GBMIV

Hi paolo, sorry to hear you were diagnosed with this terrible disease but I am so glad to hear that they can't see it on MRI. As you say a positive attitude I think does go a long way in helping. My partner was diagnosed in May 06 and after treatment is still showing no tumour MRIs (although we are getting results for latest one tomorrow). The odds are against GBMIV sufferers but as our GP once said to us "if you think you are going to die you probably will" I know thoughts alone can't fight this disease but I'm sure it helps. We live each day and enjoy it immensley as everyday that we are on this earth is a blessing. Not all days are the best but the majority are. Hope your condition improves and you stay tumour free for as long as can be. You are in my thoughts and prayers. Love to all. Jen.

In · Posted: Sun Oct 21, 2007 5:10 am Post subject: Re: I have a GBMIV

Hi paolo,

Sorry to hear of your Cancer. Stay positive and kick butt.
Let us know how things are going.
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

ksplat · Posted: Sun Oct 21, 2007 7:41 am Post subject: I have a GBMIV

Hi Paolo

So good to hear you have had success with your treatment! It's uplifiting to hear a positive story such as yours.

My Bro hasn't been so lucky & has been left paralysed on his L side after resection of his GBMIV. He's still fighting on & has a great fighting spirit which I agree has a distinct advantage when fighting illnesses such as the big "C"!

Keep on with the GOOD FIGHT. We hope to hear further from you on this forum. Your story will help to inspire & uplift others fighting brain cancer. Thankyou for sharing.

Cheers, Aussie 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"

paolo · New User Joined: 20 Oct 2007 Posts: 3

Thanks so much for all the kind words in response to my first post. I will definitely keep everyone up on how things continue for me. I just returned home from chemo (every other Monday), and am going to have my next MRI in a couple of weeks.

Paolo

SESPARR · Regular Joined: 24 Oct 2007 Posts: 15 Location: COLORADO

Hi there!
It has been a few weeks, and I was just wondering how you are feeling??? I hope everything is going great, and that you feel really good.
Let us know how you are doing??
talk to you soon!
-sarah

Andrea2 · New User Joined: 21 Nov 2007 Posts: 9

Hello Paolo,

How are you doing now?
It's been 4 weeks now...
I hope you are doing okay !

Andrea.

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