WBRT and Dementia Rate

Rory1987

Wootz I found this article earlier and I found a very small incidence rate of dementia after WBRT... 11% only a very small percentage.

LATE SIDE EFFECTS OF RADIATION THERAPY TO THE BRAIN

A review of the role of radiation in treating brain metastases would not be complete without a discussion of the late sequelae of therapy. There is a generalized fear that WBRT will result in horrendous late side effects. Much of the supporting data, though, come from the pediatric radiation literature and are not necessarily applicable to adult brains. There have also been many neurocognitive studies of glioma patients treated with radiation. It is probably not fair to compare this primary, infiltrate brain lesion with brain metastases because radiation doses, treatment fields, and the extent of surgery are all different.

In an often cited article on the late effect of palliative WBRT, DeAngelis at Memorial Sloan-Kettering27 reported on 47 patients alive without brain recurrence 12 months following WBRT. Five patients (11%) had dementia, but they all received non conventional radiation treatment. Four of the five had daily treatment fractions of 5 Gy to 6 Gy, or roughly twice what is considered the standard dose. The fifth patient received the conventional 3 Gy daily fraction size, but with a concurrent radiosensitizer. Daily radiation fraction size clearly affects late side effects in some tissues, including brain. Zero of 15 patients who received less that 3 Gy per fraction of WBRT had dementia. These data would argue that large daily radiation fraction size, and not WBRT itself, may lead to dementia or other severe late side effects. Even if one accepted the 11% dementia rate, only 15% of patients treated with WBRT are alive at one year. 8,9,10 That means that, at most, only 1.5% of patients alive at one year WBRT would develop dementia. Most patients treated with conventional WBRT are never going to develop severe late effects from their treatment. Long-term survivors may develop subtle neurocognitive changes not easily detected by bedside testing, but this must be weighted against the effects of not treating the patients with WBRT.

Radiosurgery is often advocated as a treatment option to avoid or delay WBRT: 37-63% of patients treated with SRS as monotherapy will require salvage brain treatment.7 In these retreated patients there is 5% radiation necrosis incidence requiring craniotomy. 7 The neurocognitive impact of retreatment plus or minus additional surgery are not well studied, but probably more worrisome than that of WBRT alone.

DistancerunnerXC

Incredible truth
Please be careful when you celebrate clean scans with only these "minor" "flairs" and "enhancements"
My wifes radiation treatments were targeted not whole brain, but the cognizant effects were DEVASTATING.
For a month or so, she couldn't walk, talk, think communicate..I mean it was AWFUL.
What helped her IMMENSELY was AVASTIN!
Two days after the first avastin infusion, she was up and walking, taking care of herself (I could go to work and leave her alone, with some but acceptable risk)BUT
She was still not there cognizantly and the tests done at MD Anderson told us that she had a significant loss.
The avastin did not clear this up to a great degree or it is taking it's sweet time.
In between, I have tried to keep her engaged as much as possible.
She can't add even the simplest of numbers, but knows things that we did.
Does not remember dates and cannot keep track of what day it is, yet can go in to a kitchen and fix herself lunch.
Very odd.
Do not ignore those "flairs" and "enhancements" in the MRI that in the report is said to be from radiation treatments..
Smack it down with avastin right away before these horrible side effects set in!!!!
My wife had radiation treatments from Nov 2009 through January 2010.
She was layed low by necrosis in January 2011.
It has been a fight every since to gain back even an inch of what she had but were still at it!

Rory1987

DistancerunnerXC said:

Incredible truth
Please be careful when you celebrate clean scans with only these "minor" "flairs" and "enhancements"
My wifes radiation treatments were targeted not whole brain, but the cognizant effects were DEVASTATING.
For a month or so, she couldn't walk, talk, think communicate..I mean it was AWFUL.
What helped her IMMENSELY was AVASTIN!
Two days after the first avastin infusion, she was up and walking, taking care of herself (I could go to work and leave her alone, with some but acceptable risk)BUT
She was still not there cognizantly and the tests done at MD Anderson told us that she had a significant loss.
The avastin did not clear this up to a great degree or it is taking it's sweet time.
In between, I have tried to keep her engaged as much as possible.
She can't add even the simplest of numbers, but knows things that we did.
Does not remember dates and cannot keep track of what day it is, yet can go in to a kitchen and fix herself lunch.
Very odd.
Do not ignore those "flairs" and "enhancements" in the MRI that in the report is said to be from radiation treatments..
Smack it down with avastin right away before these horrible side effects set in!!!!
My wife had radiation treatments from Nov 2009 through January 2010.
She was layed low by necrosis in January 2011.
It has been a fight every since to gain back even an inch of what she had but were still at it!

may i ask how many sessions
may i ask how many sessions of radiation did your wife had? you mentioned november 2009-january 2010 which sounds a bit lengthy. and from what I've read the risk of getting radiation necrosis depends on the total dose, dose per fraction and age of the patient upon treatment.

DistancerunnerXC

Rory1987 said:

may i ask how many sessions
may i ask how many sessions of radiation did your wife had? you mentioned november 2009-january 2010 which sounds a bit lengthy. and from what I've read the risk of getting radiation necrosis depends on the total dose, dose per fraction and age of the patient upon treatment.

Lets see
I went back through her on-line records. I wasn't sure before but here are the dates:
It was 5 days a week during the following time frame.

"From 10/26/09 to 12/07/09, status post concurrent chemoradiation therapy with low-dose daily Temodar at 75 mg/m2"

Terrible thing that I should have been on-guard for. Each scan, I would celebrate when the word "no-recurrence" was cited...little did I know.

Beware folks!!!!!!!!

Rory1987

DistancerunnerXC said:

Lets see
I went back through her on-line records. I wasn't sure before but here are the dates:
It was 5 days a week during the following time frame.

"From 10/26/09 to 12/07/09, status post concurrent chemoradiation therapy with low-dose daily Temodar at 75 mg/m2"

Terrible thing that I should have been on-guard for. Each scan, I would celebrate when the word "no-recurrence" was cited...little did I know.

Beware folks!!!!!!!!

was it necrosis that caused
was it necrosis that caused some of the disabilities in your wife? I've read also that radiation before chemo or radiation and chemo given together can increase the risk of neurotoxicity in some patients.

DistancerunnerXC

Rory1987 said:

was it necrosis that caused
was it necrosis that caused some of the disabilities in your wife? I've read also that radiation before chemo or radiation and chemo given together can increase the risk of neurotoxicity in some patients.

The docs at MDA say
It was caused by the necrosis and her story seems to reflect accurately the description in this article by Dr. Levin:

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

It's funny. I can recall reading about necrosis before all this set in and just blowing it off.
My wife and I were 160 days from retiring and finally going to achieve that goal in retirement that I had been saving for each week for 31 years before this necrosis dementia set in.
The necrosis, not the cancer may have been destroyer of those dreams and I should have done my homework better.
I hope others are more careful.

cindysuetoyou

DistancerunnerXC said:

The docs at MDA say
It was caused by the necrosis and her story seems to reflect accurately the description in this article by Dr. Levin:

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

It's funny. I can recall reading about necrosis before all this set in and just blowing it off.
My wife and I were 160 days from retiring and finally going to achieve that goal in retirement that I had been saving for each week for 31 years before this necrosis dementia set in.
The necrosis, not the cancer may have been destroyer of those dreams and I should have done my homework better.
I hope others are more careful.

radiation

Dear Distance Runner,

Did your wife have issues immediately after undergoing radiation, or did it take a year to see the problems set in?

I've been following these radiation posts with a heavy heart. I don't remember exactly what we were told, and what our thinking was when David decided to do radiation. We were in a state of shock, I guess. I knew that radiation would involve risks, but I don't think I knew how bad the risks were, or how likely or unlikely they were to develop. I still don't feel like I really know how likely the risks are.

We were contemplating whether or not to do chemo, or radiation, or both, and our oncologist told us the decision was ours, and that there were pros and cons to all the choices. But then while we were trying to decide, we got the FISH report back--the report on the histological makeup of the tumor, and it showed that it did not have the gene deletions. At that point, our oncologist STRONGLY recommended that we do both chemo and radiation. I think we just really felt like it was too risky to skip radiation. We were so scared. I remember being aware that there could be some bad side effects from radiation...but it didn't matter. David was going to either have radiation and potentially have to deal with life-threatening side effects from it at some point down the road, or he could decide not to do radiation and die from the current tumor, pretty quickly.

The more time that goes by, and the more I read about radiation, the more it concerns me. Yesterday David mentioned that he thought his hearing was getting bad. I wonder if that's a side effect from the radiation. Or the chemo? Or maybe he just has an ear infection...lots of people around here have been sick with a cold and ear infections. We will ask our oncologist when we go for David's regular 3 month MRI and checkup on April 6th. David says it's not that bad, just annoying. I'm telling myself that having some hearing loss is a side effect that I hate for him to have, but that he can totally have a wonderful life even if his hearing is compromised.

Well, now that I think back about our situation, I think radiation was the right choice for David. I think we really needed to do the radiation, and if we had to choose again, I would want David to choose to do radiation again. I'm hoping and praying that we don't see any horrible side effects down the road.

Does everyone develop some sort of issue (or issues) from radiation sooner or later? Is it just a matter of time? I don't know....what do you guys think?

Love and blessings--and peace to all of us,
Cindy

DistancerunnerXC

cindysuetoyou said:

radiation

Dear Distance Runner,

Did your wife have issues immediately after undergoing radiation, or did it take a year to see the problems set in?

I've been following these radiation posts with a heavy heart. I don't remember exactly what we were told, and what our thinking was when David decided to do radiation. We were in a state of shock, I guess. I knew that radiation would involve risks, but I don't think I knew how bad the risks were, or how likely or unlikely they were to develop. I still don't feel like I really know how likely the risks are.

We were contemplating whether or not to do chemo, or radiation, or both, and our oncologist told us the decision was ours, and that there were pros and cons to all the choices. But then while we were trying to decide, we got the FISH report back--the report on the histological makeup of the tumor, and it showed that it did not have the gene deletions. At that point, our oncologist STRONGLY recommended that we do both chemo and radiation. I think we just really felt like it was too risky to skip radiation. We were so scared. I remember being aware that there could be some bad side effects from radiation...but it didn't matter. David was going to either have radiation and potentially have to deal with life-threatening side effects from it at some point down the road, or he could decide not to do radiation and die from the current tumor, pretty quickly.

The more time that goes by, and the more I read about radiation, the more it concerns me. Yesterday David mentioned that he thought his hearing was getting bad. I wonder if that's a side effect from the radiation. Or the chemo? Or maybe he just has an ear infection...lots of people around here have been sick with a cold and ear infections. We will ask our oncologist when we go for David's regular 3 month MRI and checkup on April 6th. David says it's not that bad, just annoying. I'm telling myself that having some hearing loss is a side effect that I hate for him to have, but that he can totally have a wonderful life even if his hearing is compromised.

Well, now that I think back about our situation, I think radiation was the right choice for David. I think we really needed to do the radiation, and if we had to choose again, I would want David to choose to do radiation again. I'm hoping and praying that we don't see any horrible side effects down the road.

Does everyone develop some sort of issue (or issues) from radiation sooner or later? Is it just a matter of time? I don't know....what do you guys think?

Love and blessings--and peace to all of us,
Cindy

12 months
There were no issues from the radiation at all until the 1 year mark. The evidence was there all along as I have mentioned.
The flairs and enhancements in the MRI's that were actually dismissed by everyone as only that.
Then one day she stumbled as she got off our couch and I laughed joking with her about her joints, a week later I was dressing her.
Of course it may not be nrcrosis at all as many point out.
Some blame the dex, but the symptoms manifested themselves BEFORE she started taking the steroid.
When I read the Levin article I was convinced. That dosen't mean that it is so.
I know one thing, there is only one thing worse than the tumor itself and that is dementia.
There is no use continuing treatments of any kind if the dementia gets to an extreme point.
Hers, is moderate, it's devatating and I believe it was brought on by the radiation..
That being said, If I had to do all over again, I would probably go ahead with the radiation treatments, BUT, I would request avastin to be used when those "flairs" and "enhancements" begin to show up on the 8 week scans,,I'd head it off at the pass.

KMPonder

cindysuetoyou said:

radiation

Dear Distance Runner,

Did your wife have issues immediately after undergoing radiation, or did it take a year to see the problems set in?

I've been following these radiation posts with a heavy heart. I don't remember exactly what we were told, and what our thinking was when David decided to do radiation. We were in a state of shock, I guess. I knew that radiation would involve risks, but I don't think I knew how bad the risks were, or how likely or unlikely they were to develop. I still don't feel like I really know how likely the risks are.

We were contemplating whether or not to do chemo, or radiation, or both, and our oncologist told us the decision was ours, and that there were pros and cons to all the choices. But then while we were trying to decide, we got the FISH report back--the report on the histological makeup of the tumor, and it showed that it did not have the gene deletions. At that point, our oncologist STRONGLY recommended that we do both chemo and radiation. I think we just really felt like it was too risky to skip radiation. We were so scared. I remember being aware that there could be some bad side effects from radiation...but it didn't matter. David was going to either have radiation and potentially have to deal with life-threatening side effects from it at some point down the road, or he could decide not to do radiation and die from the current tumor, pretty quickly.

The more time that goes by, and the more I read about radiation, the more it concerns me. Yesterday David mentioned that he thought his hearing was getting bad. I wonder if that's a side effect from the radiation. Or the chemo? Or maybe he just has an ear infection...lots of people around here have been sick with a cold and ear infections. We will ask our oncologist when we go for David's regular 3 month MRI and checkup on April 6th. David says it's not that bad, just annoying. I'm telling myself that having some hearing loss is a side effect that I hate for him to have, but that he can totally have a wonderful life even if his hearing is compromised.

Well, now that I think back about our situation, I think radiation was the right choice for David. I think we really needed to do the radiation, and if we had to choose again, I would want David to choose to do radiation again. I'm hoping and praying that we don't see any horrible side effects down the road.

Does everyone develop some sort of issue (or issues) from radiation sooner or later? Is it just a matter of time? I don't know....what do you guys think?

Love and blessings--and peace to all of us,
Cindy

Cindy,
My husband's
Cindy,

My husband's radiation issues (new tumors, different malignant type) did not manifest themselves for 22 years. We are now presented with a GBM (radiation induced from WBR of 1987), and although this is the worst diagnosis, his family made the best decisions they could with the WBR at age 21 for him. He managed a 19 year teaching career and a very healthy, active lifestyle. It's my prayer that we don't have to believe something will develop sooner or later with radiation, but I know his doctors are seeing more and more issues much sooner than 22 years.

Now faced with the possibility (not sure if it can happen yet) of radiation for a third time, we'll do whatever is wise and safe to try to beat this disease and provide him the utmost quality and prolonged life.

Seek more answers from other professionals, if possible. We did, and we're finding differing opinions that gamma knife is a good idea, but we're in the battle of our lives here.

God bless your family.

Kim