Looks Like Another Bad WBR Outcome ?

[Bill]

Unfortunately, I can't reveal this individual's name without obtaining permission which I haven't at this writing. But, this person, a board member known to most of us, had been doing extremely well, even what I'd classify as in remission territory. Around June of this year brain mets were discovered. WBR was performed and this individual now states to me that " I can’t walk, I can’t type, I can’t read, I can’t write, I can but it’s very minimal ". ( I think this was written to me by the spouse ).

I'm mentioning this case becasue IMO too much emphasis is placed on the immediate or S/T transitory side effects of WBR or radiation generally. Longer term ( and permanent ) consequences of WBR such as postradiation leukoencephalopathy are unknown to many patients, seldom discussed or viewed as no cause for concern. My wife had barely any S/T side effects from WBR. Hair loss, loss of taste for a few days, some fatigue and that's all that I can remember. We walked away thinking that WBR was a piece of cake. As I stated in a previous post, WBR wasn't really that effective for my wife. It knocked out some very small suspect areas and modestly shrunk a couple of her larger brain tumors. As I also posted, up until starting Tarceva on 3/3/05 her four well-defined brain tumors hadn't significantly change in size or morphology.

My wife's condition has currently stabilized at a diminished level of memory and intellect. She's easily confused and her soft personality has hardened somewhat. She claims to feel a little more unsteady on her feet but I can't tell any difference by watching her walk ( with a cane ). She has fallen twice in recent weeks.I am fully aware that postradiation leukoencephalopathy is considered a progressive disease so if her condition stabilizes at this level I will consider her very fortunate.

BTW, thanks to gdpawel for the additional insight and info into WBR and leukoencephalopathy.

[Linus32]

Bill,

This is so horrible! I feel like this WBR treatment is something right out of a medical horror novel. My mother had WBR last fall and she is also getting worse. We were never told about the side effects of WBR. I have been searching for reasons as to why my mother's mind seems to be "going"so rapidly. I was told she has dementia!

It was not untill I read a post by you a couple of weeks ago that everything clicked. I now believe that all of her symptoms, memory loss, lack of coordination, speech problems, weakness, etc., are all a result of WBR.

Thank you so much for bringing this out for people to learn about. I really wish I would have known about it before my mother had WBR. I believe QUALITY of life is more important that QUANTITY. And my mother's quality is terrible right now.

Best wishes for your wife,

Linus

[Kel M]

Hi Bill,

I'm sorry to read about your wife's difficulties following treatment. Your wife's symptoms are quite similar to the ones my Mom experienced following the completion of treatment which included brain radiation. In her case, she was diagnosed with paraneoplastic syndrome which is more associated with the disease than the treatment (please see information below).

The doctors were eventually able to manage most of her symptoms through medication/physiotherapy. That said, she never fully regained her previous capabilities (memory, walking, etc...), but she was able to live quite productively until the cancer became visible again.

This information may not be of particular comfort to you, but I wanted to let people know that this syndrome does exist and may also explain similar symptoms. My prayers are with you, your wife and the individual you refer to in this posting.

Kel

http://www.ninds.nih.gov/disorders/paraneoplastic/paraneoplastic.htm

What is Paraneoplastic Syndromes?

Paraneoplastic syndromes are a group of rare degenerative disorders that are triggered by a person's immune system response to a neoplasm, or cancerous tumor. Neurologic paraneoplastic syndromes are believed to occur when cancer-fighting antibodies or white blood cells known as T cells mistakenly attack normal cells in the nervous system. These disorders typically affect middle-aged to older persons and are most common in persons with lung, ovarian, lymphatic, or breast cancer. Neurologic symptoms generally develop over a period of days to weeks and usually occur prior to tumor detection, which can complicate diagnosis. These symptoms may include difficulty in walking and/or swallowing, loss of muscle tone, loss of fine motor coordination, slurred speech, memory loss, vision problems, sleep disturbances, dementia, seizures, sensory loss in the limbs, and vertigo. Neurologic paraneoplastic syndromes include Lambert-Eaton myasthenic syndrome, stiff-person syndrome, encephalomyelitis (inflammation of the brain and spinal cord), myasthenia gravis, cerebellar degeneration, limbic and/or brainstem encephalitis, neuromyotonia, and opsoclonus (involving eye movement) and sensory neuropathy.

Is there any treatment?

The cancer is treated first, followed by efforts to decrease the autoimmune response - either through steroids such as cortisone or prednisone, high-dose intravenous immunoglobulin, or irradiation. Plasmapheresis, a process that cleanses antibodies from the blood, may ease symptoms in patients with paraneoplastic disorders that affect the peripheral nervous system. Speech and physical therapy may help patients regain some functions.

[Sundrop1964]

We too walked away from WBR feeling like it was a piece of cake. Get this - our radiologist even proceeded to give my dad a few extra WBR treatments because he was tolerating the treatments so well!

Oh, how I wish I had fully researched the potential consequences of WBR. It was simply presented to us as the next step in treatment (after he had radiation at the site of the removed tumor). My dad only had a solitary brain met that had been sucessfully removed via surgery.

Things progressed quickly... we would notice differences in his mental capacity monthly, then weekly, then almost daily.

My dad had absolutely ZERO quality of life at the end. It was the most pitiful thing I have ever witnessed in his life.. what is the point of being NED if you can barely recognize your children and wife, forget family members, can't walk, feed youself, roll over in bed, take care of your personal needs, etc?? I wish he had been given the opportunity to weigh the risks and make his own decision about WBR .. but again.. we were never told a thing.

It wasn't until after he started exhibiting neurological symptoms - and dementia (almost exactly 6 months after completing WBR) that I started researching.. and I remembered reading a few threads about WBR and radiation necrosis on this site. At first we thought he had more brain mets but that was ruled out via CT. When we were told he had "white matter damage" it was totally glossed over by the doctor. I said, "Is this radiation induced necrosis?" and he practically hung his head in shame. The brain cells were dying.. and it was progressive and irreversable.

It was truly a nightmare.

Sundrop

[Cindy RN]

This is a topic I am glad to see be brought out into the open.

So many are told this is the next step. I pray the new ones on here read up on this before allowing the rad. to the brain for small mets or for prvention.

Cindy

[Frank Lamb]

Bill,thank you for the heads up (and to gdpawel also).I am fortunate as I am not in this category of treatments but as time goes by who knows??.

If I am ever in need of these services I will be armed with lots of questions and research.

[Bill]

Here's an example of a very practical matter to think about. Imagine estate planning with a spouse that's NED that could outlive you but can no longer balance a check book. We thought that we had all contingencies covered in our estate planning after her cancer dx but because of her deteriorated mental condition we must revise the whole thing. Because my wife is no longer capable of competently handling even basic financial affairs in the event of my death, additional and complicated legal arrangements must be made for her care and thereafter. We have a very fragmented family which makes matters worse. Getting a safe and sound financial plan organized to cover this new twist has already proven to be one big headache. I strongly recommend that any cancer patient undergoing WBR organize their financial affairs to cover this possibility.

[mamasbabygirl]

My two cents:

My mom has radiation necrosis and her state of health is as follows:

She still does crossword puzzles and reads the paper

She cannot understand conceptual things like distance

She loses words, but don't we all sometimes!

Her left side is paralyzed. Her left leg drags when she walks.

She has no control over her left hand.

She cannot get herself into bed or out of bed or even roll over in bed. We use a sheet to pull her across.

Once she is standing and we have moved "lefty" as we call it to a straight position, she can walk by holding onto our arms, very slowly.

I just wanted to give some examples of what my mom is experiencing as result of necrosis.

I guess the flipside is that if she had not had the brain mets treated, she may not be here at all.

[Jana_W]

OMG! I just read this post and am feeling sick to my stomach thinking that maybe Mum's WBR was what caused her rapid deterioration and death. I am going to do some internet searching on the subject now. In her last couple of months Mum sufferred progressively starting with headaches and fatigue, leading to mental deterioration (including word confusion, memory loss, some speech problems, progressive loss of movement until incapable of moving at all, and incontinence. Could this be radiation necrosis from WBR? How do you know if this caused it or if she was just toxic from all the cancer?

Love

Jana

xx

[Sundrop1964]

Jana,

In our case.. when my dad started having little falls the doctor ordered a CT of the brain.. our first thought was brain mets causing the problems. It wasn't brain mets.

The CT scan showed damage of the white matter of the brain.... someplace I have the details of exactly what this means.. it has something to do with the protective covering of the brain.

My dad had another CT scan several months later and there was additional damage to the protective covering of the brain.. his necrosis was getting worse and progressing. Still no brain mets.

My dad also had the progressive loss of movement too.. he had trouble walking and started falling around June.. and by October he couldn't walk at all. By February he was incapable of moving at all on his own and he died in April. We had to turn and move him to prevent bed sores. We had to lift him out of bed to the potty chair (until he couldn't even use that anymore) . Incontinence too. As far as the mental deterioration.. at first it was just forgetting words.. progressing to memory loss, forgetting how to read, etc. When we brought him home from the hospital the last time.. he told me he didn't even recognize the house.. he thought he was in a hotel.. this had been his home for 20+ years..

Take care.

[Fay A.]

I am looking into the impact Tarceva may have on white matter.

[Sundrop1964]

FYI -

From Medline Online Encyclopedia:

Necrosis means death of tissue in the body. This happens when not enough blood is supplied to the tissue, whether from injury, radiation, or chemicals. Necrosis is not reversible.

[Bill]

Fay A. Posted: Thu Dec 15, 2005 10:49 am Post subject:

I am looking into the impact Tarceva may have on white matter.

I'm curious about that, also. The research on wbr and leukoencephalopathy is very confusing which seems to be the norm for anything related to cancer. I've seen research blaming radiation, chemo plus radiation, and chemo with radiation being, by a large margin, the most likely culprit. I would also like to know how to quantify postradiation brain damage ( progression ) by looking at a brain MRI or series of MRIs over time. Do changes noted on a brain MRI correlate well with patient symptoms ? So far, the answer in my wife's case appears to be no. Perhaps with advanced damage involving severe neuromuscular impairment and vascular damage causing stroke maybe MRI changes are more evident and easier to correlate with symptoms. The oncs seem lost and are quick to defer to the radiologist. Another hot potato. My wife's rad onc wants to wait for one more brain MRI ( for comparison ) but he doesn't even know how long to wait for this next scan. And, he wants it performed at a specific facility that specializes in cyberknife radiosurgery. ( ? ) I recall GDPawel mentioning gamma knife surgery.

[mamasbabygirl]

In my mom's case, the radiosurgeon who performed her stereotactic surgery on 5 mets says that the necrosis is in one area where one of the mets was previously treated with SRS. He has never tried to say it was from WBR. The necrosis is in one area, the one that is controlling her left side.

[Sundrop1964]

It is possible search for information posted on this board regarding radiation necrosis.. I'd suggest typing "necrosis" in the search section in the upper right corner.

Two members - Pamela and Moocow35 provided a lot of information regarding their experiences with radiation necrosis. I found their posts right around the same time my dad started exhibiting his intitial symptoms. I just reread their posts and I could have been reading about my dad.... the similiarities are spooky and scary.

You can search "Pamela" and "Moocow35" to read their specific posts.

Somethings either Pam or Moocow35 wrote struck home -regarding many doctors don't think Stage 4 patients will live long enough to experience the potential risks.. and that when people are faced with cancer they often do exactly as the doctor recommends.

Still - this isn't an excuse to properly inform their patients about potential risks.

[gpawelski]

Radiation Therapy Side Effects

The side effects of Radiation Therapy can be classified as Acute, Subacute and Delayed.

Acute reactions occur during the course of treatment and are temporary. They are manifested as signs of increased inter-cranal pressure or worsening of neurological deficits. They results from an increase in cerebral edema (abnormal accumulation of fluid). The administration of corticosteroids usually decreases or alleviates symptoms. Steroids are generally administered during the course of therapy to prevent this occurrence. Other acute reactions are nausea, vomiting, anorexia (loss of apetite), fatigue, alopecia (loss of hair) and skin irritation.

Subacute reactions generally develop one to three months after completion of therapy. These are temporary in nature. Symptoms include anorexia (loss of apetite), sleepiness, lethargy (drowsiness) and an increase in neurological deficits. These effects result from the temporary disruption of myelin formation, which helps speed the relay of nerve signals. It takes approximately six weeks for myelin to repair.

Delayed reactions usally occur 6-24 months after completion of therapy. These effects are irreversible and often progressive. They result from direct injury to brain tissue and blood vessels. These reactions are due to changes in the white matter and death of brain tissue caused by radiation-damaged blood vessels. Symptoms vary from mild to severe decreased intellect, memory impairment, confusion, personality changes and alteration of the normal function of the area irradiated. Leukoencephalopathy (degeneration of the white matter) occurs at the tumor site and surrounding irradiated brain. The clinical manifestations range from mild cognitive neurological impairment to dementia to death. Those at increased risk for long-term radiation effects are children less than 2 and adults over 50 years of age. Long-term effects can be initially managed to some degree with corticosteroids and surgery to remove necrotic tissue. Other long-term reactions include loss of vision, development of secondary malignancies (oncogenesis) and pituitary-hypothalamic dysfunction (changes in normal hormone levels) leading to problems with your thyroid, sugar metabolism, fertility or ability to process water.

Some references: (just a few)

http://www.emedicine.com/neuro/topic330.htm

http://www.merck.com/mrkshared/mmanual/ ... 7/177f.jsp

http://www.irsa.org/radiation_injury.html

http://www.aboutcancer.com/brain_radiat ... minoff.htm

http://spinwarp.ucsd.edu/NeuroWeb/Text/br-840.htm

[Snowflake]

SOME white matter damage IS reversible. Not all white matter damage is caused by WBR. I have never had WBR, I have experienced white matter damage. I was sent to a neuropsychologist to determine the extent of the damage and to get treatment to "re-learn" certain activities.

His explanation was that cancer is a toxic waste dump in the body and it can cause damage, not just mets, in the brain. Oncologists do NOT study the effects of cancer nor treatment on the brain, that's just not what they do. Seek a professional who deals with brain health and can help. You don't see the oncologist for therapy on other problem areas caused by cancer and treatment - such as stiff joints and skin rashes. I went to my GP for EVERY flippin' side effect caused by treatment by my oncologist.

Do some research, but also, see a professional. If anything can be reversed, it won't be the oncologist pulling the strings. Get the referral from either the oncologist (if s/he is open to refer you) or your GP so it goes as a medical expense vs. a mental health expense. Most insurances cover more for the medical vs. the mental health.

Bill, right now worrying how it happened is not as important as seeing a brain-mapping doctor and seeing if it IS reversible. In my case, it was. If your wife's is to ANY degree, isn't it worth the trouble? Yes, warn others of the seriousness and the possibilities, but take care to "fix" what you can while you can.

Good luck,

Becky

[gpawelski]

Very good points Snowflake. Leukoencephalopathy syndrome is a disorder that results from structural alterations of cerebral white matter, is characterized by cerebral edema, and can occur in patients of any age. Cranial irradiation and certain chemotherapy agents, especially those used in high-dose protocols, are causal agents. The prevalence of toxic leukoencephalopathy is unknown; however, this syndrome has been reported increasingly in the literature in patients who develop neurobehavioral changes following exposure to various toxins. Diagnosis must confirm exposure to a toxin and the presence of neurobehavioral deficits and neuroradiologic abnormalities. In most reported cases, clinical symptoms are reversible after the offending toxin is withdrawn.

Just as a patient who had radiation to the chest for BC or LC, you'd want to see a pulmonary specialist for any side effect problems (like Snowflake said, that's not what oncologists do). A good GP would know what referrals should be made. A neurologist and a neuropsychologist were part of the "team" at the real cancer center that finally gave my wife proper treatment. The neurosurgeon did his part (eradicate the cancer), the others of the "team" did their part in trying to eradicate the problems of side effects of adjuvant treatment.

[Bill]

Snowflake - thanks for the message. I will pass it on. I'm covering the house today for my mother and fatherc who are at a doctor appt. she is fine. I see a difference in her mentally but she is still sharper than many people that I see daily. I think that my father was more upset than normal becasue as you know my mother is NED. so the brain damage sort of rained on the good cancer news. in fact a neurosurgeon at cyberknife discovered a mistake that brain MRI radiologists had been making for over a year, one of the lesions in her brain wasnt even a brain tumor. it was an undersized pineal gland. go figure. he said that it isnt that rare for this mistake to be made with this gland. the only comment that I can make about the casue of the brain damage is that its pretty hard to get away from the causative agents if the cancer treatment is the causative agents like radiation and chemo.. thats the trap. she saw her medical oncologist yesterday and he commented that he has never seen such a dramatic turnaround in a stage four lung cancer patient. shes is the last of the original Tuesdzay group clinic regulars. all of this improvement happened after she started Tarceva . 8 months of regular chemo and she almost died. 8 months on Tarceva and shes NED. wish the same for all of you.

thanx again.

[Sundrop1964]

One of my doctors in the practice (he ordered the brain CT b/c our regular oncologist was on vacation) gave us (via telephone) the radiation necrosis diagnosis.

My father's medical oncologist sent us to a neurologist for follow up testing. The neurologist flat told us the damage was due to WBR and that it was not reversable - he actually said it was a progressive disorder. The brain cells were dying and they were continuing to die and they were not going to regenerate. And he was right.. it progressed to the point where he was a living vegetable. My father couldn't even feed himself.. and this all happened over a relatively short period of time. I remember asking him (neurologist).. why do doctors order WBR if they know about the potential side effects and he said, "to live." Well, there is living and there is existing....

My hope is that people considering/advised to have WBR will at least consider the potential side effects and ask their doctors very pointed questions before agreeing to WBR. Knowledge is power.

Good luck to everybody.

[Bill]

One of my doctors in the practice (he ordered the brain CT b/c our regular oncologist was on vacation) gave us (via telephone) the radiation necrosis diagnosis.

My father's medical oncologist sent us to a neurologist for follow up testing. The neurologist flat told us the damage was due to WBR and that it was not reversable - he actually said it was a progressive disorder. The brain cells were dying and they were continuing to die and they were not going to regenerate. And he was right.. it progressed to the point where he was a living vegetable. My father couldn't even feed himself.. and this all happened over a relatively short period of time. I remember asking him (neurologist).. why do doctors order WBR if they know about the potential side effects and he said, "to live." Well, there is living and there is existing....

My hope is that people considering/advised to have WBR will at least consider the potential side effects and ask their doctors very pointed questions before agreeing to WBR. Knowledge is power.

Good luck to everybody.

Sundrop -so sorry to hear about your father. me the son is house sitting today and reading your posts. I can tell you this. the doctors that my mother and father have seen say that the white matter brain damage from wbr is permanent but they have no idea how much more it will progress or not in my mom's case. my parents have been told thsat the usual pattern is gradual worsening not improvement. my father found a small amount of medical literature about white matter remyelination but it was in MS patients and the literature gave no medical explanation why it ocasionally happens spontaneously without treatment. my moms memory is bad and she gets easyly confused and throws frustration like tantrums when confused. she also has some trouble with balance when she stands and walks

[Kaffie]

Pretty much any time the brain is

traumatized there is great potential for

permanent damage or dementia that slowly

progresses.

My friend had brain cancer 12

years ago, no surgery

but radiation just to the tumor, a very

small area. He has necrosis and has

slowly deteriorated over the years.

Three

years ago he fell and landed on his back

in the mud. He had an edema in the back of

his head. He had to have minor surgery to

have it drained but just that little extra

trauma to the brain started to speed up the

deterioration process and within a year he

was retired from his job, and I think it will

be another 6 months to a year before he will

end up in a home.

His doctor says any time brain cells are

killed or damaged, it's permanent or will

get progressively worse.

Kathy

[Bill]

Pretty much any time the brain is

traumatized there is great potential for

permanent damage or dementia that slowly

progresses.

My friend had brain cancer 12

years ago, no surgery

but radiation just to the tumor, a very

small area. He has necrosis and has

slowly deteriorated over the years.

Three

years ago he fell and landed on his back

in the mud. He had an edema in the back of

his head. He had to have minor surgery to

have it drained but just that little extra

trauma to the brain started to speed up the

deterioration process and within a year he

was retired from his job, and I think it will

be another 6 months to a year before he will

end up in a home.

His doctor says any time brain cells are

killed or damaged, it's permanent or will

get progressively worse.

Kathy

Snowflake and Kaffie-I was going threw my fathers wbr file last nite. a huge file of information. I found one short abstract type article about postradiation brain injury for those interested in a brief summary of the disorder -

REVIEWS

Radiation injury of the brain

PE Valk and WP Dillon

Research Medicine and Radiation Biophysics Division, Lawrence Berkeley Laboratory, University of California, CA 94720.

The clinical, radiologic, and pathologic findings in radiation injury of the brain are reviewed. Late radiation injury is the major, dose- limiting complication of brain irradiation and occurs in two forms, focal and diffuse, which differ significantly in clinical and radiologic features. Focal and diffuse injuries both include a wide spectrum of abnormalities, from subclinical changes detectable only by MR imaging to overt brain necrosis. Asymptomatic focal edema is commonly seen on CT and MR following focal or large-volume irradiation. Focal necrosis has the CT and MR characteristics of a mass lesion, with clinical evidence of focal neurologic abnormality and raised intracranial pressure. Microscopically, the lesion shows characteristic vascular changes and white matter pathology ranging from demyelination to coagulative necrosis. Diffuse radiation injury is characterized by periventricular decrease in attenuation of CT and increased signal on proton-density and T2-weighted MR images. Most patients are asymptomatic. When clinical manifestations occur, impairment of mental function is the most prominent feature. Pathologic findings in focal and diffuse radiation necrosis are similar. Necrotizing leukoencephalopathy is the form of diffuse white matter injury that follows chemotherapy, with or without irradiation. Vascular disease is less prominent and the latent period is shorter than in diffuse radiation injury; radiologic findings and clinical manifestations are similar. Late radiation injury of large arteries is an occasional cause of postradiation cerebral injury, and cerebral atrophy and mineralizing microangiopathy are common radiologic findings of uncertain clinical significance. Functional imaging by positron emission tomography can differentiate recurrent tumor from focal radiation necrosis with positive and negative predictive values for tumor of 80-90%. Positron emission tomography of the blood-brain barrier, glucose metabolism, and blood flow, together with MR imaging, have demonstrated some of the pathophsiology of late radiation necrosis. Focal glucose hypometabolism on positron emissin tomography in irradiated patients may have prognostic significance for subsequent development of clinically evident radiation necrosis.

[Kaffie]

Very interesting reading, thank you.

I don't fully understand the white brain matter

and how it works with wbr. With my friend it

was the good brain cells that were killed along

with the killing of the cancer cells that did

the damage. I don't know why it continues to

progress.

He is living alone right now, but has symptoms

similar to your wife's. His balance is off and

he falls, scuffs his feet when he walks, he has

a walker but doesn't use it much.

He is paying his own bills but I don't know for

how long as he is starting to lose the ability

to realize the value of a dollar.

At work just prior to them retiring him, a year ago, he had to urinate bad enough to know he was about to wet his pants but the stalls were full so

instead of going in the trash can or even

running out side, he was

seen urinating in the sink, so his judgement

is poor. He does remember this but feels he

did the right thing.

He gets angry if he doesn't get his way and

has been known to get physical. He has lost his

ability to feel emotion, his reaction to

various situations is totally inappropriate. He

cannot understand anyone's needs but his own.

Now, he is this way from just radiating a very

small area of he brain, he didn't have the wbr.

Kathy

[Don]

Hello,

I posted this info on another thread so will do so here as well.

For info about brain tumors look at:

www.abta.org

And for info on Gamma, cyberknife & other forms of brain tumor treatments

www.irsa.org

This IRSA.org site also has info about WBR and lots of other info as well. Can help locate hospitals and centers that specialize in gamma, etc., for the treatment of brain tumors. Phone numbers to call for info., and lots more. A good site for good info.

God bless all of you patients out there.

from Letty (I'm Don's wife).