Long time listener - first time caller...

Billy Pilgrim · New User Joined: 18 Mar 2008 Posts: 3

At Brainman's suggestion I am posting my intro story here too.

I'm a 47 yr old man, married with a 14 yr old daughter, located in St. Louis, Mo and I have cancer.

I had been having what I called "fits" for about a year or more. Tremor in my left hand, gulping for breath. Never passed out but noticed the siezures were getting more intense. My primary physician decided it sounded like I might be having a reaction to another med I was taking. Stopped taking that drug but kept having the fits.

In mid to late October 2007 I had a complex-partial siezure in my sleep and was taken to the ER. A CT Scan determined I had a mass on my brain in my right frontal lobe. After a couple of MRI's the neurosurgeon determined that I had an oligodendroglioma tumor in my right frontal lobe and in the temporal lobe. At this time no one said anything about cancer but I was told at this time the tumor was too big and invasive and was inoperable.

I had a needle biopsy performed which confirmed an anaplastic oligodendroglioma stage lll tumor with the chromosomal deletions.

I've been taking PCV chemotherapy courses since mid November, 2007. Worst side effect has probably been fatigue. I don't think I'm sleeping very well at night but have heard the Keppra can cause that.

I had a MRI in late January 2008 which the oncologist said showed no change in the tumor. The neurologist said there had in fact been a change in the density of the tumor in both lobes and the midline shift had been reduced.

That's it in a nutshell. Chemo continues until sometime in May 2008, then another MRI to see what's going on, followed by radiation therapy - 5 days a week for 4-6 weeks...

brainman

Hi Craig, I am very sorry about your cancer. Brain cancer sucks the life out of you. I was diagnosed with a grade II glioma back in 1992. It that time, I was given a 10% chance of surviving 10 years. Well, here I am... 15 years and counting. I did have a recurrence in 2005. In 2005 is was staged and a grade III. Since 1992, the prognosis for a grade I-III glioma has much improved. I think just because more long term studied have been done. I think the prognosis for a low grade glioma is almost totally reverset now... the odds of a person not surviving for 10 years or more is now less than 10%. Hopefully the same is try for a grade III.

I too took PCV. I took it for over 13 months. That was my only treatment back in 1992. I did experience the weakness you speak about due to low red blood cells. But I also experienced nausea at least one day in a cycle. They ended up discontinuing the Vincristine injections after a couple of cycles because on it was causing neuropathy to my toes. Still have that. I often say that I had to give up one year of my life in order to live 14+ years. A fair return on my investment Wink

. It sounds like your chemo is at least partially working too.

Although my tumor was relatively small and right of the surface of the brain, it was on the motor strip so the surgeon was afraid that I would lose the use of my right side and ability to speak. I do have difficulty speaking and my right arm and hand are weaker. I also have balance problems and can fall quite easily.

As you can see, you are not alone in this.

You 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/

ksplat

Welcome Craig

Thankyou for your informative post. I am so sorry you to hear about yr diagnosis of an Oligo. My prayers & thoughts are with you.

I have read on here many inspirational stories about long term survival with this type of tumour. Jim (brainman) is the GURU in this field & you will receive the best info from him & loads of support from us other members on this forum.

All the best to you.
Cheers, Aussie Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!

"Without Faith We Have Nothing"

laycswms · New User Joined: 15 Mar 2008 Posts: 4

Billy,
We are from the St. Louis area too. My dad has GBM, we found out in mid-January. What hospital are you receiving treatment from? My dad is on Keppra, and he doesn't sleep well like he used to, but when he was on a different steroid for 3 weeks or so, he didn't sleep at all. It's strange how grateful you can be for small things like sleep.
_________________
My Dad is strong enough to beat this!

Billy Pilgrim · New User Joined: 18 Mar 2008 Posts: 3

[quote="laycswms"]Billy,
We are from the St. Louis area too. My dad has GBM, we found out in mid-January. What hospital are you receiving treatment from? My dad is on Keppra, and he doesn't sleep well like he used to, but when he was on a different steroid for 3 weeks or so, he didn't sleep at all. It's strange how grateful you can be for small things like sleep.[/quote]

I'm at St. Louis University Hospital.

Good luck to your dad.

laycswms · New User Joined: 15 Mar 2008 Posts: 4

We are also at SLU. We go back for our first MRI after the radiation either April 13 or 14 so we are on edge until then. I pray soo hard that it is clean. I can't imagine being without my dad. I'm too young to have to go without a dad. He wouldn't be able to see me graduate or get married or have grandchildren. I feel this is the most debilitating disease someone can get. But that makes me even more determined to go to the ends of the earth to help him.
Stay Strong!
_________________
My Dad is strong enough to beat this!

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