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Glioblastoma Multiforme

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ccholbre
Posts: 1
Joined: Feb 2014

I was diagnosed on Febuary 28th with GBM. I had a total resection of the tumor on March 5th 2013. I took 30 radiation treatments along with 140 mg of Temodar. Had a two week break and started the 5 days on 23 days off cycles of Temodar at 300 mg. It has been 11 months now and not the first sign of my tumor returning. Is this the normal? I can't seem to get a clear answer from even my doctors about this. I am so happy and hopeful and grateful don't get me wrong its just every story I have read and I have read a lot, massive amounts of stories people may go a few months but the tumor comes back. They may even go 6 months but it comes back....I have not once read a story where someone went nearly a year with no regrowth of a GBM. I have read plenty of survivor stories of GBM, but they have had multiple surgeries and a lot of people are living but with severe deficits. If anyone out there has a story similar to mine please share it with me, I would be so grateful. Lets face it, I want this to be over, I hate it , I hate Temodar, I hate MRIs, I hate CTS.....I hate the whole freaking mess. Just ready to get on with my life and not wake up with ....GBM on the brain( no pun intended, well maybe a little) Not have to think about oh crap gotta go get blood work today, oh crap what is my blood count should I stay in and not be around people this week????? UGGG..hope there is someone out there that can relate. Thanks bunches:O)

mccindy
Posts: 82
Joined: Jun 2013

Every person is different.  I have a friend on another forum who just had a clear scan in November, and that was his three-year mark past his original "death date".  It's been over four years since his diagnosis and surgery.  He knows it could come back at anytime, but he is just living day-by-day, enjoying his time with his son, and his job.  I've read blogs by people who survived 5 and even 10 years after being diagnosed with GBM.  The key is, no one knows when your tumor might grow back.  Enjoy each day you have and try not to stress about it TOO much (easier said than done, I know).  Celebrate every day that you are free from cancer's return! 

Marc_Carter
Posts: 3
Joined: Feb 2014

A second on the "every person is different."  I know someone 13 years post-op who is cancer free.  I do believe that she's exceptional, but still: it can happen that it either doesn't recur or that it takes a long time to recur in some people.

 

I'm only two months post-op, so I'm still learning and researching this.  But there seems to be huge variability in outcomes, especially if it's a complete resection (or at least 99%).

 

Best wishes.  Good luck!

Rose10027
Posts: 4
Joined: Feb 2014

And for context, I'll add that I was 53 when diagnosed, had a complete resection, and my KPS scores (or whatever those are) were well above 90. My tumor tested as methylated and I tolerate the chemo well, except for the fatigue. Now knocking on all sorts of wood for having said all this. 

Rose10027
Posts: 4
Joined: Feb 2014

Well, I try not to jinx it by talking about it too much, but I just had my MRI on Monday, 11 months out from DX. I'm still "stable" with no reoccurance (although the possible scar tissue they mention worries me--but doesn't seem to worry them). In fact, I'm realizing that I'm a pretty boring GBM patient, but my NO says that's exactly what I should be. I have no deficits beyond some short-term memory (but that seems to be getting better) and definitely fatigue due to the chemo. I've been working since 2 weeks after surgery. 

smaragdin
Posts: 2
Joined: Jan 2014

Hi ccholbre!

I'm Sorry to hear about you been diagnosed with gbm.

But I'm really really glad to hear that you are fine and there's NO reccurence!!!

My father was diagnosed 07.11.13. Its been a month after his radiochemo-therapy! In 3 days he starts his 5 days course of Temodal.

I hope for results similiar to yours for him!

I wish you no reccurance and every day to feel better and better!!!

Ayline
Posts: 5
Joined: Feb 2014

My Father is at the same stage as your father. He will finish radiation soon and by 2-3 weeks we will do an MRI and we hope there will be no reccurrance.

Did he take Temodal during radiation? or what you mentioned will be the first time he is taking Temodal?

Thanks.

Ayline

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