Hope For Others

I have not ever posted on this site before.  I have been a "lurker" since November 2010.

I noticed several new posts of newly diagnosed patients, and could feel their (or family member's) desperation in search of some good news.  I hope I have some to offer.

My husband was diagnosed November 2010 at the age of 50.  He had a resection (not quite 100%, but close).  His tumor was located in the left temporal lobe.  I immediately set out to find the best place for treatment, and having grown up in NC, knew of Duke's reputation, AND that they had a brain tumor center.  I placed a referall call to Duke and was called back by Dr. Henry Friedman.  We sent Mike's scans and some tumor slides for them to study.

Duke's plan was to start Mike on Temodar and Avastin from the get-go as well as undergo the standard radiation therapy.  We were very blessed to have an oncologist in our hometown (in Alabama) that would work and has worked seamlessly with Duke.

Mike went through the six weeks of radiation with only a little fatigue.  Never missed a day of work.  Went on the Avastin and Temodar.  Avastin infusion every other week and five day Temodar regimen (5 days on, 28 days off).  He would only get fatigue on days 5, 6, 7, 8 with the Temodar, but not enough to keep him home from work.

We go back to Duke about every 8-10 weeks for an MRI.  We have had some "suspect" spots and places that the doctors wanted to watch.  The last two MRIs have a spot (small, about 1/4 inch) that seems to be camping out.  Next week, they are going to hit it with radiostatic surgery.  Less invasive than actual surgery.

What I wanted to offer to those looking for some hope . . . Mike is 19 months (today) since diagnosis.  Most people would not know that he has a brain tumor.  He has rarely missed any work.  Drives, works in the yard, vacations, and has, for the most part, lived a very normal life.

Mike lives as if he does not have a tumor.  I know he has been greatly blessed.  I hope that this post offers others a ray of hope. 

Best wishes for a blessed day.

Teri

On Jun 19, 2012 5:59 PM packbacker wrote:

I have not ever posted on this site before.  I have been a "lurker" since November 2010.

I noticed several new posts of newly diagnosed patients, and could feel their (or family member's) desperation in search of some good news.  I hope I have some to offer.

My husband was diagnosed November 2010 at the age of 50.  He had a resection (not quite 100%, but close).  His tumor was located in the left temporal lobe.  I immediately set out to find the best place for treatment, and having grown up in NC, knew of Duke's reputation, AND that they had a brain tumor center.  I placed a referall call to Duke and was called back by Dr. Henry Friedman.  We sent Mike's scans and some tumor slides for them to study.

Duke's plan was to start Mike on Temodar and Avastin from the get-go as well as undergo the standard radiation therapy.  We were very blessed to have an oncologist in our hometown (in Alabama) that would work and has worked seamlessly with Duke.

Mike went through the six weeks of radiation with only a little fatigue.  Never missed a day of work.  Went on the Avastin and Temodar.  Avastin infusion every other week and five day Temodar regimen (5 days on, 28 days off).  He would only get fatigue on days 5, 6, 7, 8 with the Temodar, but not enough to keep him home from work.

We go back to Duke about every 8-10 weeks for an MRI.  We have had some "suspect" spots and places that the doctors wanted to watch.  The last two MRIs have a spot (small, about 1/4 inch) that seems to be camping out.  Next week, they are going to hit it with radiostatic surgery.  Less invasive than actual surgery.

What I wanted to offer to those looking for some hope . . . Mike is 19 months (today) since diagnosis.  Most people would not know that he has a brain tumor.  He has rarely missed any work.  Drives, works in the yard, vacations, and has, for the most part, lived a very normal life.

Mike lives as if he does not have a tumor.  I know he has been greatly blessed.  I hope that this post offers others a ray of hope. 

Best wishes for a blessed day.

Teri

 

Thank you.

We too were in the trial at Duke with Dr F.

They are kind and caring.

My husband is 21 months out and he too lives a pretty normal life.

Good Luck

Banks

There are Many LTS out there and plenty of reasons to be hopeful.

 I am 2 years out from recurrence and 19 years out since initial diagnosis.

Feel as good as I did 19 years ago with the exception of some battle scars and a little less hair.

Changed jobs about a year ago to pursue a better career and bought a new home recently.

A healthy dose of denial is not a bad thing when it comes to brain cancer.

Hux

Good evening,

My husband had an oligo tumor (grade II) in left temporal/frontal lobe and had a resection (as close to 100% as possible). His oncologist's approach is "Wait and See" so he has repeat MRIs every 6 months. It has been 15 months now - so far so good. Thank the Lord! We live in NC but did not go to Duke.

I was wondering what kind of tumor and what grade was your husband's tumor?

Thanks for sharing the encouragement,

Becky

It was a GBM, which makes it a 4.

While in the trial he had MRI's every 8 weeks, now every 9 weeks. He remains on  Avastin every 3 weeks.

He was blessed with a freat surgeon and then Duke.

Good Luck

Thanks to everyone who posts about what the treatments are/were. I think we all learn from each other.

I remember when my dh was first diagnosed, I looked everywhere for info and most of it was very discouraging.

God bless,

Laurie V (w/o John, diagx 2004, standard surgery, 6 weeks radx, 6 months temodar, 2006 recurrence, CPT 11 with avastin, BCNU, carboplatin with Tarceva, now just Tarceva. Stable.