Grade 3 long term survivors

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Grade 3 long term survivors

by slbbw on Thu Dec 20, 2012 08:41 PM

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There is not a ton of folks on here with grade 3 tumors, I tend to see mostly GBMs or grade 2 oligos.  We went through the full regimen of treatment and have had our first clear scan since being off treatment for 2 months now.  yay!  I wonder though if I can revert to my optism, or if we should be expecting a recurrence and when.  Most of our doctors have been very optimistic with prognosis, yet we were still recommended to do radiation and Temodar.  I feel like we are in no mans land here and really am not sure what to expect. 

I try to take one day at a time and really not worry about it, but that is sometimes quite difficult. 

RE: Grade 3 long term survivors

by onarolll on Thu Dec 20, 2012 09:10 PM

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My wife diagnosed with grade II oligo in 1997, accelerated to grade III in 2000-ish, underwent radiation in 2003, surgery in 2004.  Clear scans for 7 years until last Christmas, when a cyst formed in the resection cavity and new growth appeared below that.  Surgery for the cyst in Feb 2012 but the new growth in too sensitive an area.  Began taking homeopathic Ruta protocol last December ongoing, began Temodar in May through August.  October MRI showed cyst area collapsing in on itself, and no sign at all of the recurrent growth.

Merry Christmas!

RE: Grade 3 long term survivors

by kat54 on Fri Dec 21, 2012 05:14 AM

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Next month will be 20 years grade IVGBM. I was diagnosed in 1993. Had a recurrence in 1995 and second surgery then. I did radiation and stereotactic radiosurgery in 1993.  no chemo as at that time it would not cross the brain blood barrier so I chose to hold off until something better came along.  So far I have not needed it.I truly believe God blessed us with a miracle and a good surgeon.

RE: Grade 3 long term survivors

by karynk on Fri Dec 21, 2012 05:41 AM

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My husband's tumor was a grade 3 for about 6 years.  It was a grade 2 when he was first diagnosed.  He had more problems with side effects from treatments than the actual AOA.  From dx he lasted 11 yrs 4 months.

RE: Grade 3 long term survivors

by marfunk84 on Sat Dec 22, 2012 01:53 AM

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My husband's been an AA 3 since March 2008. Only started showing any cognitive deficits in Feb/March 2012, but this was after a ton of intervention(Temodar, 3 surgeries, meningitis, hydrocephalus, radiation, gamma knife, clinical trail, Temodar again, more radiation). It's actually remarkable how much his brain endured for so long. I remember our surgeon telling us after his intial diagnosis that AA3 is a crapshoot--some act like a "2" tumor for years; others quickly morph into a "4".

RE: Grade 3 long term survivors

by ShawnaRae3 on Thu Dec 27, 2012 03:15 AM

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On Dec 20, 2012 8:41 PM slbbw wrote:

There is not a ton of folks on here with grade 3 tumors, I tend to see mostly GBMs or grade 2 oligos.  We went through the full regimen of treatment and have had our first clear scan since being off treatment for 2 months now.  yay!  I wonder though if I can revert to my optism, or if we should be expecting a recurrence and when.  Most of our doctors have been very optimistic with prognosis, yet we were still recommended to do radiation and Temodar.  I feel like we are in no mans land here and really am not sure what to expect. 

I try to take one day at a time and really not worry about it, but that is sometimes quite difficult. 

I am a grade III AA, diagnosed Dec 2008. I have absolutely no signs of reoccurrence since & my last MRI was in August. It has been recommended to continue the scans every 6 months. The stories & information that we hear often make our optimism difficult to know what to feel, think, or live because its not what we are fighting for daily. We fight to regain normality, to have our life back close to what we knew. Due to my uncertainty after diagnosis, surgery, & treatment a terrible fear set inside me & I kept asking when, where, how long & a Dr. plainly stated to me "no one really knows, I cannot answer your question honestly but I can tell you this is your story & you write the ending no one else can". I can honestly tell you that was the answer I needed then & now when I start that uncertainty, I remind myself it's my story & the last chapter is always the best part of the story (book). It is hard to find anyone out there with a grade III or anyone that I could relate to, I find they are glio's or children. The support for a 40 yr old person with kids, spouse, work, etc is difficult to find. I desperately wanted to find the optimistic individuals fighting & believing the way I did & do. Obviously it is horrible, devastating, & as we are told a death sentence But i will not stop looking forward to retirement w/ my husband, grand kids, old age. If I do that I am dead, today I'm here, I will live my story & ending! Be very careful on reading to much info it can bring you so far down that you wonder what it's worth. Don't read it, turn it off keep your optimism it will live forever.

RE: Grade 3 long term survivors

by rainflame4 on Mon Dec 31, 2012 05:48 PM

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Thank you for this chain.  My finace was just diagnosed with a anaplastic astrocytoma, grade 3 on 12/13/12.  We too are looking for stories of long term survival to inspire us and it really does seem to just depend on the individual.  He starts 6 weeks of radiation and chemo in a week.  Best of luck to you!

Sarah

 

RE: Grade 3 long term survivors

by HONEYCOMB1968 on Sat Jan 05, 2013 05:30 PM

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On Dec 31, 2012 5:48 PM rainflame4 wrote:

Thank you for this chain.  My finace was just diagnosed with a anaplastic astrocytoma, grade 3 on 12/13/12.  We too are looking for stories of long term survival to inspire us and it really does seem to just depend on the individual.  He starts 6 weeks of radiation and chemo in a week.  Best of luck to you!

Sarah

 

was diagnosed with this in 1999 and still here no recurrences I was 31 when diagnosed and told i had 5 years with treatment i'll be 45 in may so keep your faith your not going anywhere till its your time god bless all

RE: Grade 3 long term survivors

by rainflame4 on Fri Jan 11, 2013 04:42 PM

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On Jan 05, 2013 5:30 PM HONEYCOMB1968 wrote:

On Dec 31, 2012 5:48 PM rainflame4 wrote:

Thank you for this chain.  My finace was just diagnosed with a anaplastic astrocytoma, grade 3 on 12/13/12.  We too are looking for stories of long term survival to inspire us and it really does seem to just depend on the individual.  He starts 6 weeks of radiation and chemo in a week.  Best of luck to you!

Sarah

 

was diagnosed with this in 1999 and still here no recurrences I was 31 when diagnosed and told i had 5 years with treatment i'll be 45 in may so keep your faith your not going anywhere till its your time god bless all

Thank you so much for sharing this with us... I will pass this along to my fiance.  He loves to hear of people who have beat the odds.  He has been told 2-3 years, maybe longer becasue of his age and gross total resection.  He isn't accepting that as his fate and has the best attitude towards this that any caregiver could ask for.  He is approaching it with so much faith and hope and I am so proud of him.  Thanks again for sharing your story.

RE: Grade 3 long term survivors

by Plndg on Fri Feb 01, 2013 05:15 PM

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Hi Sarah I was also just diagnosed with aa3. I had surgery on dec 26th the surgen removed 100% of the Tumor! I also start 6 weeks of radiation and a year worth of temador. My doctors gave me no such prognosis of 3-5 years they actually said due to complete resection and aggressive "preventative" treatment especially with my age (I am 31) I should survive this thing long term. They were very confident I would put this behind me and move on. So I wouldn't worry about that 3-5 year prognosis if it was a complete resection and they kill what ever cancer cells are left I feel good about long term survival. Good luck my prayers are with you and please keep us posted on this thread I will do the same. Joe
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