radiation necrosis

They put my husband on 21day
They put my husband on 21day temodar when they saw "flair enhancement" on his last mri. He was on 5day cycle. His blood work was good so he is still taking the 21 day for the this month also. We have another mri scheduled for June. Doc said it may just be from the radiation. I am totally stressing about all this.

Rory1987 said:

NEcrosis
From what i've read necrosis can be as devastating as tumor recurrence. There are also studies about using avastin for radiation necrosis.

Necrosis devastating to my wife
I know I have gone on with this and I apologize. But since you ask.
My wifes horror story began on January 9th 2011. One year from the time of her last radiation treatment.
The year in between had gone great with 8 week scans indicating that there were just these "enhancements", "flairs", "treatment effects"..nothing to worry about right?
January 8th, we had gone out to eat and went to the library, climbing the stairs, laughing, going out to eat.
She rode her stationary bike..then she stumbled off the couch.
I laughed.
The next day I was changing her diapers.
She couldn't hold herself up, she just fell over like humpty-dumpty.
She melted into the shower stall floor, just slid down the wall and lay right there.
Bruises from head to toe..just kept falling, falling.
She started not making sense at all.
That began with her voice raising about two or three octaves..
She started talking like a little girl..
She couldn't tal me anything about anything. It was dementia.
We rushed a call to her neuro-oncologist who prescribed avastin.
Within 1 or 2 days after that first infusion, she could get up and walk again and I did not have to pay a person to stay with her.
She NEVER overcame the dementia.
She puts her nightie on backwards nearly every night and has that glazed look as she walks around.
She knows things, unlike alzheimers, but she just can't express herself at all.
I have not had a conversation with her since January 8th.
Just yes, no..or she'll indicate through signals of some kind what she wants..she can show me where certain pots and pans are and remembers things that alzheimers patients cannot, YET, it is DEVASTATING.
She can dress herself sort of, and get cold stuff out of the fridge, BUT that's about it.
I have to take 3 hours sick leave everyday to get her started..then I go to work.
The dementia is worse than the tumor in my opinion so this was a double hit.
It hurts to see that she has no interest at all in her old hobby's and no longer takes pride in keeping her garden and house.
Radiation Necrosis...that came out of left field.

DistancerunnerXC said:

Necrosis devastating to my wife
I know I have gone on with this and I apologize. But since you ask.
My wifes horror story began on January 9th 2011. One year from the time of her last radiation treatment.
The year in between had gone great with 8 week scans indicating that there were just these "enhancements", "flairs", "treatment effects"..nothing to worry about right?
January 8th, we had gone out to eat and went to the library, climbing the stairs, laughing, going out to eat.
She rode her stationary bike..then she stumbled off the couch.
I laughed.
The next day I was changing her diapers.
She couldn't hold herself up, she just fell over like humpty-dumpty.
She melted into the shower stall floor, just slid down the wall and lay right there.
Bruises from head to toe..just kept falling, falling.
She started not making sense at all.
That began with her voice raising about two or three octaves..
She started talking like a little girl..
She couldn't tal me anything about anything. It was dementia.
We rushed a call to her neuro-oncologist who prescribed avastin.
Within 1 or 2 days after that first infusion, she could get up and walk again and I did not have to pay a person to stay with her.
She NEVER overcame the dementia.
She puts her nightie on backwards nearly every night and has that glazed look as she walks around.
She knows things, unlike alzheimers, but she just can't express herself at all.
I have not had a conversation with her since January 8th.
Just yes, no..or she'll indicate through signals of some kind what she wants..she can show me where certain pots and pans are and remembers things that alzheimers patients cannot, YET, it is DEVASTATING.
She can dress herself sort of, and get cold stuff out of the fridge, BUT that's about it.
I have to take 3 hours sick leave everyday to get her started..then I go to work.
The dementia is worse than the tumor in my opinion so this was a double hit.
It hurts to see that she has no interest at all in her old hobby's and no longer takes pride in keeping her garden and house.
Radiation Necrosis...that came out of left field.

So sorry to hear about your
So sorry to hear about your wife's experience with radiation necrosis. I too have a lot of worry about this for our son, as he is starting radiation for an astrocytoma III, 26 years after being diagnosed with a medulloblastoma when he was 8 (he is now 34). The docs have said that this second bout of brain cancer was caused by the previous radiation. The radiation doc advised that he should have radiation this time around as well in order for the Temodar to be effective. He also acknowledged that there is a chance of Rad. Nec. but the chance is small, around 10%. I am struggling with this as the doc said more or less that there is no cure for his cancer, that the goal of treatment is to slow things down. If that's the case, I can't see why he should have the radiation. For me, it's a quality of life issue. But it is up to our son, of course, who said he wants to go for the full treatment. I'm curious: what kind of tumor did your wife have/had, and was it all removed? Have the docs diagnosed it has Rad Necrosis? Sure hope and pray that things improve for you both.

DistancerunnerXC said:

Necrosis devastating to my wife
I know I have gone on with this and I apologize. But since you ask.
My wifes horror story began on January 9th 2011. One year from the time of her last radiation treatment.
The year in between had gone great with 8 week scans indicating that there were just these "enhancements", "flairs", "treatment effects"..nothing to worry about right?
January 8th, we had gone out to eat and went to the library, climbing the stairs, laughing, going out to eat.
She rode her stationary bike..then she stumbled off the couch.
I laughed.
The next day I was changing her diapers.
She couldn't hold herself up, she just fell over like humpty-dumpty.
She melted into the shower stall floor, just slid down the wall and lay right there.
Bruises from head to toe..just kept falling, falling.
She started not making sense at all.
That began with her voice raising about two or three octaves..
She started talking like a little girl..
She couldn't tal me anything about anything. It was dementia.
We rushed a call to her neuro-oncologist who prescribed avastin.
Within 1 or 2 days after that first infusion, she could get up and walk again and I did not have to pay a person to stay with her.
She NEVER overcame the dementia.
She puts her nightie on backwards nearly every night and has that glazed look as she walks around.
She knows things, unlike alzheimers, but she just can't express herself at all.
I have not had a conversation with her since January 8th.
Just yes, no..or she'll indicate through signals of some kind what she wants..she can show me where certain pots and pans are and remembers things that alzheimers patients cannot, YET, it is DEVASTATING.
She can dress herself sort of, and get cold stuff out of the fridge, BUT that's about it.
I have to take 3 hours sick leave everyday to get her started..then I go to work.
The dementia is worse than the tumor in my opinion so this was a double hit.
It hurts to see that she has no interest at all in her old hobby's and no longer takes pride in keeping her garden and house.
Radiation Necrosis...that came out of left field.

Radiation Necrosis
My husband has never had a seizure and is not on seizure medication. He is working everyday. Could the flair enhancement still be the start of this radiation necrosis?????

Beckymarie said:

Radiation
My husband had radiation for his GBM in March 2009. If I knew then what I know now, I would have questioned the benefits of brain radiation. We were told the day they found his brain tumor that this was an incurable cancer and he had a year or less. He did make it 15 months. I felt he changed dramatically after the radiation, extreme fatigue, muscle weakness especially in the legs, confusion. His quality of life diminished. Looking back I would have gone for less time and better quality to his life.

Quality vs Quantity
Wow....you are now singing my Theme Song. I was diagnosed in 1994 with multiple meningiomas. Had the brain surgery, sinus surgeries and radiation therapy. Fast forward to 2005 when it was upgraded to brain cancer. The tumors had returned in places previously resected and are also now in places that are considered inoperable.

I have made my wishes clear to my husband, family and doctors that I am about Quality of Life vs. Quantity of Life. My own personal opinion is that I would rather have a few short years of pretty darn good than many years of pretty darn bad. I already know that the tumors will kill me; the doctors have made that quite clear. But I have made it clear that I want to be the one who choses what is important to me, including how much time I have left.

palmyrafan said:

Quality vs Quantity
Wow....you are now singing my Theme Song. I was diagnosed in 1994 with multiple meningiomas. Had the brain surgery, sinus surgeries and radiation therapy. Fast forward to 2005 when it was upgraded to brain cancer. The tumors had returned in places previously resected and are also now in places that are considered inoperable.

I have made my wishes clear to my husband, family and doctors that I am about Quality of Life vs. Quantity of Life. My own personal opinion is that I would rather have a few short years of pretty darn good than many years of pretty darn bad. I already know that the tumors will kill me; the doctors have made that quite clear. But I have made it clear that I want to be the one who choses what is important to me, including how much time I have left.

I applaud your decision. Our
I applaud your decision. Our quandry is that it is our son who is facing this. And we're not sure if he understands what this second bout of radiation might do to him. We do have power of attorney for him as he's not as sharp as he was since his surgery. The only thing we have to go on is that in the beginning, right after surgery and before we even met with the radiation doc, he said he wanted the radiation and the chemo. So that's what we are honoring. He is single and has no girlfriend or kids, so that's not a factor. We just don't want to have any regrets.

DistancerunnerXC said:

Quality
I finally agree that quality is better than quantity in this sense.
There is nothing (and I don't know why it gets to me)like watching your wife walk around with a nightie on backwards with one arm all balled up in the sleeve and not knowing what to do..
My wife was diagnosed as having radiation necrosis.
She was treated based upon a this study:

http://www2.mdanderson.org/depts/oncolog/articles/09/5-may/5-09-2.html

I don't think I would have done anything different, but I hope to never have to make a decision again whether or not to have radiation treatments done..If I were new to this, I would make sure:

1. You know exactly what kind of radiation treatment is going to be done..

2. Listen very closely to what the radiation report says and ask questions as to the possible side effects of those treatment effects.

3. Maybe, I would consider asking for avastin treatments about 8 or 10 months out if no recurrence is showing but treatment effects are, whether or not symptoms are showing of necrosis. Head any problems off at the pass.

I read where only a small percentage actually come down with the symptoms....My wife did and it has been a real trip.

Thanks so much for the link
Thanks so much for the link re: Avastin therapy for radiation necrosis. I will definitely ask about this when we see the radiation doc tomorrow. While it sounds like it helped some, I'm so sorry that it hasn't improved the dementia. You take care of yourself too.

connsteele said:

So sorry to hear about your
So sorry to hear about your wife's experience with radiation necrosis. I too have a lot of worry about this for our son, as he is starting radiation for an astrocytoma III, 26 years after being diagnosed with a medulloblastoma when he was 8 (he is now 34). The docs have said that this second bout of brain cancer was caused by the previous radiation. The radiation doc advised that he should have radiation this time around as well in order for the Temodar to be effective. He also acknowledged that there is a chance of Rad. Nec. but the chance is small, around 10%. I am struggling with this as the doc said more or less that there is no cure for his cancer, that the goal of treatment is to slow things down. If that's the case, I can't see why he should have the radiation. For me, it's a quality of life issue. But it is up to our son, of course, who said he wants to go for the full treatment. I'm curious: what kind of tumor did your wife have/had, and was it all removed? Have the docs diagnosed it has Rad Necrosis? Sure hope and pray that things improve for you both.

Amazing
I was told that I had rad. Nec. After radiation for a tumor 38 years ago. Now they are wondering if it is a new tumor.... I had Avastin for the necrosis and it seemed to work for a month or so....now I'm waiting to see if we can do a biopsy... It doesn't seem to ever go away but some of us have been able to fight it off for a while....best to you and your family!

connsteele said:

Thanks so much for the link
Thanks so much for the link re: Avastin therapy for radiation necrosis. I will definitely ask about this when we see the radiation doc tomorrow. While it sounds like it helped some, I'm so sorry that it hasn't improved the dementia. You take care of yourself too.

It strikes again
I called my wife at 2p.m. from work.
A big test leaving her home alone after 9a.m. to go to work.
Anyway, I call her at 2p.m. and she says something about the sink and the basement.
I put 2 and 2 together and clocked out and drove home.
She had used the sink, forgot to turn off the water, the water filled up, flowed over for hours came through the downstairs finished basement ceiling into the garage.
I came home called the insurance man, he called the folks that clean up things like this and rebuild...
They told me that I will have to have all the ceiling in the downstairs (trilevel house) and garage replaced and all the walls to to the downstairs rooms replaced.
Their tearing it all out tomorrow...

Another fun day in glio/necrosis land!!!

DistancerunnerXC said:

Quality
I finally agree that quality is better than quantity in this sense.
There is nothing (and I don't know why it gets to me)like watching your wife walk around with a nightie on backwards with one arm all balled up in the sleeve and not knowing what to do..
My wife was diagnosed as having radiation necrosis.
She was treated based upon a this study:

http://www2.mdanderson.org/depts/oncolog/articles/09/5-may/5-09-2.html

I don't think I would have done anything different, but I hope to never have to make a decision again whether or not to have radiation treatments done..If I were new to this, I would make sure:

1. You know exactly what kind of radiation treatment is going to be done..

2. Listen very closely to what the radiation report says and ask questions as to the possible side effects of those treatment effects.

3. Maybe, I would consider asking for avastin treatments about 8 or 10 months out if no recurrence is showing but treatment effects are, whether or not symptoms are showing of necrosis. Head any problems off at the pass.

I read where only a small percentage actually come down with the symptoms....My wife did and it has been a real trip.

Rad Necrosis
I've also read that people aged 50 years are susceptible to Rad Nec. and It affects almost 90% of patients aged 60 and above...