suz222's Message Board Messages

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My son was in a trial at UPMC.  Specifically Hillman Center in Pittsburgh.  To the best of my knowledge, the study lost its federal funding but I'm not sure they actually stopped taking patients because they had a big backlog of vaccine.  Anyway, it's targeted at stage II.  You can private reply me for more info about our experiences.  Short story, we LOVED the UPMC team.

With you!  New survival records 'R Us.

That sounds small to me.  Some of seen on MRIs - and yes, I've learned how to read brain scans - are much more intrusive.  My call?  I think you're going to be one of the lucky ones and have many many years ahead of you!

Small.  His tumour was about 2.5 centimetres and left frontal lobe.

Dr. Berger was our doctor!!!!  He is the best best best best!! After much research, we chose him and will not regret that choice.  We actually left Canada and totally free health care to be treated at UCSF.  He AND his team are unbelievable.

He was 19 when he was incidently diagnosed after a minor head bump while he was a swimming instructor at summer camp.  He was in the middle of nowhere but a young ER doctor at a regional hospital saw something she didn't like on his CT scan.  She was sensitized because her young daughter has a brain tumour.  She emailed his report to Princess Margaret, a leading Canadian cancer centre.  They recommended an MRI and hence caught his LGG.  And no, no recurrence.  Thank God!!!!

He's super - thanks so much for asking!  No deficits after surgery almost 6 years ago.  No progression as of his last MRI in July.  If he can keep this up for another 60 or 70 years, I'm good.

We laughingly have a deal.  His job is to not have a recurrence.  My job is to worry.  So far, we're both holding up our ends of the bargain!

RE: malignant grade 2 astrocytoma

by suz222 - September 13, 2018

I just want to share that my son was incidentally diagnosed with a Grade 2 astrocytoma at 19 after a minor head bump at summer camp where he was a swimming instructor.  He had surgery and a subtotal ressection.  The tumour was very small to begin with, so the tumour residue is subsequently small.  Seems so much like your daughter with his positive attitude.  He's such a hero - although completely aware of the situation, he appears to feel this is behind him.  I pray he's right.  Wishing your daughter all the best.

My son was incidentally diagnosed in the summer of 2012 and had a sub-total resection in December, 2012.  We were advised to do watch-and-wait but disagreed and chose the surgical route.  Really glad we did as surgery has since become the gold standard treatment where possible.

I'm so glad to hear Mike's doing well!!!  Happy upcoming 20th too!  I really think triple negative biomarkers are a huge survival advantage - my son is a triple negative as well as Mike.  And, thanks for asking, he's doing wonderful well.  He had his biannual MRI in July and all was well.  Such a relief!!!  On a different note - my sister-in-law was a neuro intensive care nurse at Sloan Kettering in NYC before going back to school to become a doctor.  She's now a neuro shrink.  Anyway, in her experience, many people had years and years of progression-free survival after diagnosis.  Decades even.  In the 6 years I've been following brain cancer, I've seen massive changes.  Still, there's so much not known.  Perhaps those like Mike and Drew (my son) will inform the field for those newbies recently diagnosed.

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