Astrocytoma grade 2/3

6 Posts | Page(s): 1 

Astrocytoma grade 2/3

by SLY1987 on Sat Jun 08, 2019 02:31 AM

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Hello everybody. My fiance’s Journey technically started last summer, when he was hospitalized for (starting on July 9th) for 36 days for acute severe pancreatitis. He was in a coma for most of his stay, and during his coma they felt compelled to do an MRI. That’s when they found a mass. They said it was probably nothing, but should be followed up on anyway. They’re reason for not being too concerned at the time was that his prognosis for the pancreatitis was not great, and they wanted to do their best to get him out of that situation first. He (to their surprise) walked away with no deficits. He followed up with his primary doctor concerning the mass, and his primary referred him to Stanford. We live in northern Nevada, so it was about a 5 hour drive for the appointment. The doctors told him that it looked benign, but that, of course, they could not be sure unless it was biopsied. This appointment was in November, and because the doctors seemed to think it was benign and slow growing, he decided to wait until after the holidays to get a biopsy. Then, the winter weather lasted unusually long and he wanted to wait until the weather cleared up before driving over the mountain pass. So fast forward to May 5th, when he started having seizures. He was rushed to the local hospital where they drove him via ambulance to Stanford. The following day, they biopsied him. It turns out that most of the tumor could be called grade 2, but there were two pea sized spots that they are calling grade 3. The tumor itself has been described as about the size of my fiance’s pinky. The pathology found it to be idh1 mutant and mgmt met. On May 30th, he underwent brain surgery. They were able to resect 70% of the tumor, but had to leave 30% that is too deep in the motor cortex. He was discharged from Stanford on Wednesday, and is now recovering from “brain stun” at a local rehabilitation center here in Reno. He had a hard time speaking and moving the right side of his body for the first few days, but is coming along fantastically! He is now on “low risk” for falling and can walk himself around! The follow up at Stanford is July 10th (almost a year to the day after our first scary medical experience). Apparently, he will not start chemo/radiation until after this follow up. I am concerned about this.. they had to leave 30% in his brain. Why not start therapy ASAP?! Anyone who has any experience on why this may be or what we can do to “light a fire under their butts” would be greatly appreciated. Also, anyone who has any encouraging stories regarding prognosis. I froze up each time that I tried to talk to the doctor about this, and I don’t like what I’ve been reading on the internet. I’d like to think that because he is soooo STRONG (they gave him a 90% mortality rate during his hospital stay last year, and they were saying on the 10% chance that he did make it that I would likely have to care for him in every way for the rest of forever.... he walked out of there with our son in his arms!) that he can leave this in the dust! With his strength and God on our side, I try to remain optimistic. But any encouraging stories of long term survival are very welcome

RE: Astrocytoma grade 2/3

by Buster00 on Thu Jun 27, 2019 02:50 PM

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hi very similar story to my own since 2011 siezure now at months to live onco says !!!!!!

RE: Astrocytoma grade 2/3

by SLY1987 on Fri Jun 28, 2019 01:33 AM

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Hi Buster. Thanks for your reply. I'm so sorry for your news. I'll be adding you to my prayers! I'm still new to all of this craziness and am still trying to learn all that I can... are there any clinical trials available near you that you could be eligible for? I really hope so. I'm rooting for you!

RE: Astrocytoma grade 2/3

by Buster00 on Fri Jun 28, 2019 09:21 AM

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On Jun 28, 2019 1:33 AM SLY1987 wrote:

Hi Buster. Thanks for your reply. I'm so sorry for your news. I'll be adding you to my prayers! I'm still new to all of this craziness and am still trying to learn all that I can... are there any clinical trials available near you that you could be eligible for? I really hope so. I'm rooting for you!

thanks will do x

RE: Astrocytoma grade 2/3

by bizzerbee on Wed Jul 17, 2019 09:16 PM

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Hello, My husband was diagnosed last May. He had a golf ball sized grade 3 AA. He had a gross total resection and just finished his 12 cycle of chemo. 

The beginning of this diagnosis is really rough but it does get easier. The reason they do a one month rest period is for the brain to settle after surgery. radiation is intense on the brain and it would be understand to h it and further damage his brain cells. They will soal wait another month after radiation before they begin his maintenance chemo for the same reason. 

Prognosis with this cancer is a crap shoot. Some patients love the average 5 years while others go on for a decade or more. As of right now this cancer is incurable but it is treatable. No one can tell you what your fiance's journey will be. Love in a place of hope. Facebook had two astrocytoma groups will many long term survivers and great advice. 

My advice make sure he is getting treatment from s brain tumor clinic and not just a general one. A proper nueroradologist and nuero oncologist will make a difference in his survival. 

RE: Astrocytoma grade 2/3

by marabiton on Sat Oct 05, 2019 05:42 PM

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Sorry to jump-in late.

Grade 2/3 Astro inoperable large (about 6 - 7 cm).

Diagnosed in May 2014 after a seizure.  7-10 year median survival but they have no idea.

Treated for 3 years with low-dose Temozolimide daily.  Neuro-onc wants to start radiation.  Radiation onc says it doesn't matter.  "No right answer" he says.  I've waited because of the story below.  You can't start-stop-and-restart radiation.  If something is happening in your life that may interrupt radiation, it's best not to start it.  You get one shot and it's 6-weeks, 5 days a week.  I'm waiting for calm in my life...and another MRI.

Still working.  Recently had an argument with a snow-flake at work.  The entire team wanted me fired for using profanity (literally 30 second exchange, he started).  They blamed my tumor, company blamed my mental state of mind, disability insurance doesn't cover "mental illness."  Fought for it and lost so I'm back at work waiting for their next attempt to get rid of me.  Lawyers want me to sue but after reading the fine print, they're as bad as the disability insurers, company, and co-workers (maybe I'll write a book, it's just that unbelieveable)...(I'll get spell-check).

Just turned 60, (20 years older than my co-workers and manager), about to celebrate my only child's wedding, and my 30th wedding annivesary.  Yeah, should be happy-days trying to enjoy what's left of my life...

We've been through unbelieveable tribulation.  

To answer your question, no one knows what may happen with this particular diagnosis.  Forget getting a doctor to answer.  Just too many unknowns to hazard a guess.  It may not kill the patient at all.  Lot's of other issues can arise.

The only thing I can promise is that people will use it against you when it suits them, right or wrong...including loved-ones.  Others will ignore you because they are clueless and afraid to get involved because they don't know what to say.

I pray and study my Bible.  If not for my faith, I'm absolutely certain I'd be a statistic already.

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