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radiation necrosis

panormitis
Posts: 16
Joined: May 2011

Could anyone tell me more about necrosis?? And about your experience with this???

They found another "spot" (1 inch ) in my husbands brain. The old tumor had reacted very well on both radiation and chemo. But now this new "spot" has been growing through the therapy, meaning that if it is a tumor it did not reacted at all on the therapy. But if it is necrosis it will not have grown more? The next scan was planned for the beginning of July but I have told them that it worries me and now they are going to do the scan one month earlier, so two instead of three months.

Thanks a lot,

Hetty

sadinholland
Posts: 226
Joined: Apr 2011

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's picture
Rory1987
Posts: 122
Joined: Nov 2009

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

DistancerunnerXC's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

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.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I am so sorry to hear about your beloved wife. I can't even begin to imagine what you are going through, either one of you.

I will admit, that i have never heard of radiation necrosis until I joined the boards, but what I have heard is not good.

I have since learned that when I went in 2 weeks ago to get a new ear tube put in my ear (tumors are in my sinuses and eustacian tubes among many other places) that my surgeon took a sample of tissue from my sinuses to verify whether it was new tumor or "radiation necrosis". She verified that it was new tumor.

There is not a lot of information available (at least that I can find) about radiation necrosis but I admit that I am concerned about whether or not all radiation patients are prone to getting it, what the symptoms are, how long it takes to show up, etc.

My husband and I are trying to learn all we can about this so we can be better informed "just in case".

You and your wife will be in prayers and I pray that your wife will improve under your loving care and that of her physicians. Sometimes, the cure is worse than the illness.

Peace.

Teresa

connsteele
Posts: 232
Joined: May 2011

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.

Beckymarie
Posts: 358
Joined: Aug 2009

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.

connsteele
Posts: 232
Joined: May 2011

I really agree with you re: finding the right balance between quality of life and length of life. It's such an individual thing. We are meeting with our son's doc on Thursday to get clarity as to the dosage he's getting, ie, if it's a reduced amount to account for the damage that the past radiation did. This is so overwhelming. It would be easier if it were me going through this.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

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.

connsteele
Posts: 232
Joined: May 2011

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.

Gliomadude
Posts: 7
Joined: Apr 2011

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!

Gliomadude
Posts: 7
Joined: Apr 2011

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!

sadinholland
Posts: 226
Joined: Apr 2011

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?????

DistancerunnerXC's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

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.

connsteele
Posts: 232
Joined: May 2011

I am so sorry for what you've gone through with your wife. But you are to be commended for all you've done for her and sticking by her during this time. We all do the best we can. And that's good enough.

connsteele
Posts: 232
Joined: May 2011

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
Posts: 232
Joined: May 2011

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.

DistancerunnerXC's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

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!!!

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Im so sorry to here what you are going through. When the doctor talk to us about the side effects of the radiation she said that in 6 to 12 months there maybe some forgetfulness.She said like when you go to the store to pick up five things and you cant remember what the last thing was. She said then step it up a couple of notches. Also that learning new things might be harder. My sister said ok I will start making a list when I go to the store and write down appts etc... Sounded simple enough. Im so scared. My sister is my rock the one that I turn to for everything. She is the smartest person I know. She was the A student I was only the C student. Why her brain....We are only three months into this thing. My heart is so broken.

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

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...

sadinholland
Posts: 226
Joined: Apr 2011

My husband's doctors did not go over any of this with us. He only told us that if my husband didn't have the radiation treatment, his time would be shortened. They still have not mentioned anything about this to us.

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