I am here....

6 Posts | Page(s): 1 

I am here....

by DavidZ on Wed Nov 28, 2012 04:49 PM

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new here,,,I don't want to be here, but I need to be here. My wife was diagnosed with GBM in Nov. 2011.

After the cards and calls and caseroles stop coming you still have to deal with reality....and that is my wife has GBM. We are being strong but are scared too....of the future.

I am here for support and communication with others going through the same thing we are. So this is my first post...hopefully this is a good place to be...time is precious (as you know)....lets see where this all goes.

I see there are numerous topics/discussions to read over...wont be able to get through them all in one sitting...OK...rambling...well Hello!

RE: I am here....

by siblingof on Wed Nov 28, 2012 07:54 PM

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Hello, David. My sister was diagnosed with GBM in Dec 2010. Still kickin'.

RE: I am here....

by Randy1958 on Wed Nov 28, 2012 10:02 PM

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On Nov 28, 2012 4:49 PM DavidZ wrote:

new here,,,I don't want to be here, but I need to be here. My wife was diagnosed with GBM in Nov. 2011.

After the cards and calls and caseroles stop coming you still have to deal with reality....and that is my wife has GBM. We are being strong but are scared too....of the future.

I am here for support and communication with others going through the same thing we are. So this is my first post...hopefully this is a good place to be...time is precious (as you know)....lets see where this all goes.

I see there are numerous topics/discussions to read over...wont be able to get through them all in one sitting...OK...rambling...well Hello!

Hi David,

I was diagnosed with GBM IV February 25th, surgery February 28th.  I was in the hospital a total of 6 1/2 days.  I had a bas**** the size of a golf ball.  They removed it but told us very likely they were just buying me some time; one figure I heard was two years.  OK, that was the opinion of the hospital staff where they performed the craniotomy--I was being referred elsewhere for followup treatment.  They didn't give me a number, but results speak for themselves:  I had 33 treatments of proton radiation, oral Temodar beginning with 140 mg for approximately 40 days, then three months of 300 mg Tem, then 3 months of 400 mg Tem.  I've two MRIs since beginning treatment in April and both times, to put it in docspeak (and at this point I've memorized this sentence), "there is no evidence of recurrence or residual neoplasm".  Docs at two places even agreed I could go back to work; I'll find out more at tomorrow's appointment.  Today makes two months since the September MRI and all I'm noticing in the way of deficits are the Temodar wearing off (mainly weak legs; I haven't had any nausea in about two weeks, and an occasional mild headache).

Scary?  You'd better believe it.  Just because I have a "clean" bill of health for now doesn't mean this monster won't come back with a vengeance.  Not being negative here, and I won't pull any punches: GBM is ALWAYS a level four because it is truly a demon from hell.  So I'm very glad you joined this site, there are some wonderful people here, very informed people who are far more knowledgable than I am.  Don't hesitate to call on anyone you think may be able to provide some assistance or moral support.

RE: I am here....

by DavidZ on Thu Nov 29, 2012 02:03 PM

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Thanks Randy....if your username indicates DOB....we are the same age.

My wife's tumor was the size of a kiwi...or small lemon. It has been just over a year....seems like a long time ago...and feels like yesterday. I have to remind myself that as hard as it is for me...it is much harder for my wife.

All MRI's to this point have not shown any new growth or reaccurance. We pray that it stays that way. I wish I had a magic wand and could just waive it around purging the world of this nasty thing.

Thanks for the welcome, I look forward to contributing here when I can.

RE: I am here....

by DavidZ on Thu Nov 29, 2012 02:04 PM

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On Nov 28, 2012 7:54 PM siblingof wrote:

Hello, David. My sister was diagnosed with GBM in Dec 2010. Still kickin'.

Alsmost 2 years....that is awesome and encouraging. Hoping for many more years.

Thank you for the welcome.

RE: I am here....

by kat54 on Thu Nov 29, 2012 10:38 PM

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David I too am sorry you are here too.  Jan 18 will be my 20 year anniversary.  My full story is under bios kathleen rhodes  on yasg.com .  Don't get too stuck on statistics.  you will find at virtual trials.com there are many more long term survivors than dr's will lead you to believe.  my diagnosis was confirmed by dana farber, brigham &  women's in boston, m.d. anderson and johns hopkins.  stay positive and i pray for the best for your wife. kathleen

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