One patient with glioblastoma still alive nine years later
by noodle85 on Mon Feb 18, 2013 11:24 AM
by noodle85 on Mon Feb 18, 2013 02:46 PM
On Feb 18, 2013 11:24 AM noodle85 wrote: I guess, I feel the need to finally vent or maybe connect with someone in a some what of a similar situation. It has been roughly a 2 1/2 month process of me finding out about my diag.
Don't know wear to really start, so I guess I'll start with posting my story and see what comes from that.
I'll start with my early symptoms that I ignored (mild seizures) for nearly 3 years, thinking that it was do to past rec. drug use or maybe just stress with work and birth of my wonderful son. He came along with his own health complications due to having downs. That has been a hard road on its own and we are still struggling to get his complications taken care of. Just because I'm so worried about him because I'm daddy,
I am going to stray off my subject for a little bit and talk, gloat , and just be the proud dad that I am, and tell his story first because he always comes first. My son was born with downs., which originally was no big deal. I grew up with a friend who's brother had downs. And he Is a great kid. So I had great outlook on the situation origanilly.
I say originally because being young and un-informed about the full situation on downs. Kids, that it more than a mental state.
He was born 1/16/09 by emergency c- section due o2 complications, and that's was when he was rushed to a more equipped hospital. That is when we recieved conformation on the downs, and with the downs comes with a complete av canal defect. Operable at the time, but the took the watch and wait approach. But we're told surgery will be needed in between age of 6 months to 3 yrs.
A year later we travel to another hospital for a heart cath. And possible surgery. That is when he was also diagnosed with severe pulmonary hypertension. So that delayed his heart surgery. For further details on my wonderful son or if you just want to see the happiest face in the world. You can go to www.gofundme.com "" target="_blank" rel="nofollow">http://www.gofundme.com " target="_blank" rel="nofollow">www.gofundme.com /ShaneheartsBoston.
Now back on the whole stupid brain tumor subject. I was ignorantly self diagnosing my self. Thinking it was stress "dizzy spells " and not seizures for 3 yrs. Didn't read into it to much. You know, mid- twenties state of mind,feeling invincible.
Until this past November and "spells " started becoming more frequent and more intense. So I say okay maybe, I've been drinking a little to much lately. So I quit drinking right away, cold turkey. Didn't feel improvement. So stop drinking my usuall four pack a day of red bull.no "" target="_blank" rel="nofollow">http://bull.no " target="_blank" rel="nofollow">bull.no improvement. So I went to the ER for dizzy spells and chest pains. Spent 2 days in a inpatient detox hospital and left with a diagnoses of anxiety and depression.
Sorry I have to cut this short but I will be back on later to vent some more got to get the boy ready for school and I am going for a second opinion for myself today. Might be why I've been on the Internet instead of sleeping
Thank you a head of time for any messages of hope
On Feb 18, 2013 11:24 AM noodle85 wrote:
by siblingof on Mon Feb 18, 2013 11:46 PM
by noodle85 on Tue Feb 19, 2013 12:49 AM
by mollie924 on Tue Feb 19, 2013 01:47 AM
My husband was diagnosed with AA III in Jan, 2011. He went through chemo and radiation. Finished temodar in May 2012. His latest MRI was 2/14/2013. He is stable, no recurrence and living life like he did before his diagnois. You have your young age on your side. Hope this helps.
by noodle85 on Tue Feb 19, 2013 03:38 AM
by siblingof on Tue Feb 19, 2013 01:54 PM
by noodle85 on Tue Feb 19, 2013 03:49 PM
by mollie924 on Tue Feb 19, 2013 05:43 PM
I don't know what is the latest opinion is about starting Avastin right after temodar either but a year ago our NO had suggested continuing on the temodar for another year. My husband was tired of being on the temodar and wanted a break. A NO I consulted with at Mass General thought it was a good idea to take a break from temodar also and restart it if the MRI's show a recurrence. I had read that the tumor will mutate when on the temodar for long period of time and the temodar will not be effective and also there is the possiblity of myleodysplastic syndrome (same thing as Robin Roberts developed after her cancer treatment for breast cancer). Go for a 3rd opinion.
by noodle85 on Wed Feb 20, 2013 02:49 AM
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