Gbmiv Returns

Dad Age 50 Dx July 15th 2007
GBMIV Left Temporal lobe
Surgery July 19th 2007- complete ressection
No deficits
6 wks Temodol and Radiation
One month Break
Temodol 21/7 for 6 months
3 Clear MRI's
Last MRI on April 13th shows regrowth at original site, 1.4 cm in size.
The Tumor is superficial, basically touching his skull. I work as a nurse and saw the MRI myself.

Temodol has been stopped.
Radiation not an option again
We will be seing the surgeon tomorrow to see if a 2nd sugery is an option(although dad really doesn't want to go through another one)
And apparently decisions will be made by Wednesday in regards to what schedule/dose/type/combination of chemotherapy he will start up on and whether or not he will be having another craniotomy or perhaps travelling to have gamma knife.... which will take time to organize.

I don;t even know why I am writing... We were SOOOOOOOOOOo happy, and felt we were beating the odds to get to 9 months with no news of regrowth... Dad is feeling great.... has his energy back and is completely the same person he has always been....We never expected a new tumor was growing.
Im 23 and scared to death.
Its soooo hard to remain hopeful and positive?
Im scared he'll give up, Im sick of the crying. I just dont know how to handle it anymore. I feel like I am almost avoiding the situation, in denial and bound to crash at any minute.

Do any of you have any opinions on options here?
I think they are going to continue the Temodol--- only on the schedule of 5/23 instead of 21/7.... plus I think they are going to throw another Chemo into the mix of things. Any suggestions? Avastin is not available to us here in Canada.... not for GBM's anyways.

What about Gamma Knife?
2nd Surgery?
Special diets?

Anyyyyyy suggestions at this point would be greatly appreciated.
We want to get things rolling before this new tumor completely takes over. Just, dont know what the best road to take is.

I understand this is now a chronic disease.... and I understand that it will most likely.... eventually take over.
I do not want him to suffer.... I want him to have QUALITY time....
And at the same time, I want him to fight with all that he has.

I wish I could take it from him. I'd do it in a second.

Anyways, any thoughts would be appreciated,
Thanks,

Dad's Cheerleader--- Kara

I sent you a private reply

Kara,

I'm so sorry to hear that your Dad's tumor has regrown. Seems he was doing everything they said and it still came back. I'm sure that is so heartbreaking for all of you. My dad was similar to yours w/the surgery and tumor location...he only did the radiation and had 7 months free of the beast. In feb. his started to come back, he tried the oral chemo, didn't work and in April is had grown quite a bit...they suggested a 2nd surgery....actually insisted on it and he had it partially removed on April 11. He is still in the hospital recovering and he's not in the best mood. He's actually in a horrilbe mood and I'm wondering if the 2nd surgery was worth it? Obviously his speech is effected and he can't express himself and it's really sad. Our situation is a little different though, he lives a lone and the hospital won't release him there w/o 24/7 care. He just wants to go home and were trying to listen to him, but also the doctors so that he's safe too. I just wanted to let you know how a 2nd surgery is taking place right at this moment. My dad doesn't have the fight all in him. He hates the meds and he doesn't want to live like that. I'm not sure why he agreed to this 2nd surgery, but he did. In our area they mentioned he had to do more chemo and more radiation. I'm wondering why your dad can't have more radiation? He probably finished up the same time my dad did...in September? Although I believe that gamma knife is a radiation process. Good luck in your decisions. Being 23 and having to see our father fight thru this must be so scary and difficult. I'm 36 and have trouble. Your dad is young and he sounds like he has a fight in him. I totally understand your thoughts on all the possible decisions and how to make the best one? That Avastin sounds promising from what I've read on these boards. Maybe there is a way you can look into that? Maybe someone on here can help with information on it. We haven't spoken to the oncologist yet about what kind of chemo they are suggesting. The temodar did nothing for him in March. My dad doesn't want to take it though, so we may never get that far.

Good luck to you! Stay Strong.

Jill

I'm replying because I lost my father to GBM in 1996.  He did not have a second surgery and did not do much chemo.  That was his decision after weighing the pros and cons of further treatment.  That decision is very personal.  I thought at the time that my father made the right decision to go out gracefully and spare his family as much pain as possible. 

Now my wife has GBM and I am amazed at some of the options that are available.  There have been siginificant advances in the past 12 years.  The treatment is still considered pallative, but generally speaking the treatments are better tolerated and more effective.  My wife is almost three years from intial diagnosis.  So it is possible to stretch the odds.

 One of the best treatments for recurrent tumor is Avastin combined with CPT-11 or another chemo.  You should seriously look into this.  It has a very high response rate and is generally well tolerated.  My wife has been taking Avastin with Temodar since February and has had few side effects. 

I wish Temodar and Avastin had been around in '96.  I still think ultimately my father would have lost the battle, but I would have liked to have had more time with him.  I miss him every day even after 12 years.

 

Do you guys know WHERE? We can look into Avastin.... it is NOT offered to us here in New Brunswick.

Also, we are seeing the surgeon at 130 today. I'll let you all know what he says.

Thanks for all of your replies.

I would go directly to the drug company for help.  I know I was told that if we needed to use Avastin for my husband's tumor in the future & our insurance won't foot the bill, most likely the drug company would help with the cost. I have a prescription for a Canadian medication from a US doc.  I don't know why it couldn't work the other way around.

 

 

On 4/20/2008 Kara-DadsCheerleader wrote:

Dad Age 50 Dx July 15th 2007
GBMIV Left Temporal lobe
Surgery July 19th 2007- complete ressection
No deficits
6 wks Temodol and Radiation
One month Break
Temodol 21/7 for 6 months
3 Clear MRI's
Last MRI on April 13th shows regrowth at original site, 1.4 cm in size.
The Tumor is superficial, basically touching his skull. I work as a nurse and saw the MRI myself.

Temodol has been stopped.
Radiation not an option again
We will be seing the surgeon tomorrow to see if a 2nd sugery is an option(although dad really doesn't want to go through another one)
And apparently decisions will be made by Wednesday in regards to what schedule/dose/type/combination of chemotherapy he will start up on and whether or not he will be having another craniotomy or perhaps travelling to have gamma knife.... which will take time to organize.

I don;t even know why I am writing... We were SOOOOOOOOOOo happy, and felt we were beating the odds to get to 9 months with no news of regrowth... Dad is feeling great.... has his energy back and is completely the same person he has always been....We never expected a new tumor was growing.
Im 23 and scared to death.
Its soooo hard to remain hopeful and positive?
Im scared he'll give up, Im sick of the crying. I just dont know how to handle it anymore. I feel like I am almost avoiding the situation, in denial and bound to crash at any minute.

Do any of you have any opinions on options here?
I think they are going to continue the Temodol--- only on the schedule of 5/23 instead of 21/7.... plus I think they are going to throw another Chemo into the mix of things. Any suggestions? Avastin is not available to us here in Canada.... not for GBM's anyways.

What about Gamma Knife?
2nd Surgery?
Special diets?

Anyyyyyy suggestions at this point would be greatly appreciated.
We want to get things rolling before this new tumor completely takes over. Just, dont know what the best road to take is.

I understand this is now a chronic disease.... and I understand that it will most likely.... eventually take over.
I do not want him to suffer.... I want him to have QUALITY time....
And at the same time, I want him to fight with all that he has.

I wish I could take it from him. I'd do it in a second.

Anyways, any thoughts would be appreciated,
Thanks,

Dad's Cheerleader--- Kara

 

HI Kara:

So sorry to hear about the recurrance. My wife is 51 and we went through this same scenario. There are a number of options. For us, my wife's GBM came back about 4 weeks after she had her first craniotomy, radiation, and temodar. She had a second operation (we were going do the Gamma Knife but the tumor was too large already). The Dr. rcommended Avastin and CPT-11. It took me two months to fight the inusrance company to provide the Avastin but we finally won. My wife could not tollerate the CPT-11 so she is only on Avastin now.  Her scans have been clear since Oct-07 (6 months) so something is working!

The Gamma Knife is a good option, non invasive, takes more time to prepare than the actual proceedure, and you can often do it as an outpatient. There are also a number of new Chemo drugs as well as a promising vaccine being developed. So there is a lot of room for hope! My kids are your age and I know what they are going through. It's very hard what you are experiencing.  Your Dad is lucky to have a daugher like you! I will keep you both in my thoughts.

 

C

 

 

 

Hey everyone, I just thought I would update you on what has happened with Dad so far.
We went to the surgeon yesterday and they have decided to hold off on a 2nd surgery for the time being. The tumor is in an operable spot and is 1.4cm in size as of right now. I think the plan is to wait and see what happens on the new schdeule of chemo (of which we will learn about tomorrow) and then have another MRI about 2 months from now. Then, go from there.