Astrocytoma grade 2/3

5 Posts | Page(s): 1 

Astrocytoma grade 2/3

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

Quote | Reply
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

Quote | Reply

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

Quote | Reply
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

Quote | Reply

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

Quote | Reply

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. 

5 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.