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Brain Radiation Necrosis

gdpawel's picture
Posts: 525
Joined: May 2001

The treatment method recommended for brain metastases of large solitary tumors exceeding 2cm in diameter is surgical resection followed by 5 fractions(at 2.0gy per) of focal radiation to the local tumor bed. My wife received the 5 fractions plus an additional 20 fractions of Whole Brain radiation(at 2.0gy per). Mindful, these were well within the tolerable limits of up to 55gy but radiated to the whole brain. The optimal dose of radiation necessary to destroy microscopic foci of tumor after surgical resection of a single brain metastasis is unknown.

Whole Brain Radiation induces neurological deterioration that is progressive and often irreversible. It results from direct injury to brain tissue and blood vessels. The risk increases with higher total dose, higher dose per fraction and with concomitant use of neurotoxic chemotherapeutic agents. Chemotherapy affects both normal and tumor cells. The effect on normal cells is the cause of side effects from chemotherapy. Some chemotherapy drugs do permeate(pass through) the blood brain barier(the system that protects the brain from foreign substances by blocking their passage from the blood). The group of drugs called nitrosoureas like Cisplatin, Cisplatinum or Carboplatin are such drugs and natural substances such as Taxol, also cross the barrier. My wife had previous chemotherapy treatments of Taxol and Carboplatin.

Necrotizing leukoencephalopathy is the form of diffuse white matter injury that follows chemotherapy, as well as a suppressed immune system. The body's immune system attacks and eliminates not only bacteria and other foreign substances but also cancer cells. Cancer cells are not foreign to the body but their biological function has been altered in that it doesn't respond to the body's normal mechanisms for controlling cell growth and reproduction. Cancer is 100 times more likely to occur in people who take drugs that suppress the immune system than in people with normal immune systems. My wife almost didn't make it through her chemotherapy treatments. She could only receive five of the six intended treatments. We met a number of other patients that didn't make it through their chemotherapy treatments.

The clinical manifestations of Radiation Necrosis range from mild cognitive neurological impairment to dementia to death. Radiation Necrosis occurs more commonly after radiosurgery but can occur after conventional Whole Brain Radiation therapy as well. The major complication of radiosurgery is the development of symptomatic Radiation Necrosis requiring prolonged administration of steroids and reoperation. The rate of reoperation is 30%-40%, usually within six months. Radiation Necrosis is common with Whole Brain Radiation dosages beginning at 50gy, although frequency of Radiation Necrosis is anywhere from 2%-50% at dosages beginning at 30gy(depending who's research you read).

As if my wife's complications with Radiation Necrosis, brought on by Whole Brain Radiation and Taxol/Carboplatin chemotherapy weren't enough, she was subjected to improper medical protocol for brain and spinal MRI's for metastatic disease(unenhanced instead of enchanced-contrast), which left an undiagnosed tumor on her spine. After nine months, while admitted to the hospital for testing and evaluation for unexplained falls and light-headiness, the oncologists failed to perform a Spinal Tap and/or enhanced MRI and failed to diagnose three spinal metastases. They let her go home to fall and break her hip in four places.

With the damage already done to her, oncologists at another hospital(in order to save her life or at least give her some time) had to administer intrathecal(to the brain) Methotrexate along with systemic radiation(15 fractions at 2.0gy) to the spine. This is when I came across for the first time, the idea of Radiation Necrosis. The oncologists showed me her enhanced brain MRI's from the previous year and the one performed then. It showed the progressive deteriation of her white matter(white matter disease). Late delayed effects, occuring several months to many years later are classified into diffuse white-matter injury, radiation-induced arteriopathy & stroke and late delayed radiation necrosis. Late delayed Radiation Necrosis is often irreversible and progressive, leading to stroke, severe disability or death.

The most recent enhanced brain MRI's, Pet Scan and EEG showed even more diffuse white-matter injury. The Pet Scan showed globally decreased radiotracer uptake withing the brain, bilaterally, consistent with involutional change and prior radiation therapy. The MRI's showed the ventricles overall were prominent and there was widening of the sulci consistent with atropy. There was diffuse, abnormal signal intensity within the periventricular white matter, consistent with post radiation changes. The EEG showed generalized diffuse slowing that was significant with global encephalopathy. It is most commonly seen in toxic metabolic and degenerative conditions. There appeared to be a real amount of focal right sided slowing which would indicate cortical dysfunction on that side.

My wife died at the age of 68 from Cardiopulmonary Failure(almost two years from the day she finished Whole Brain Radiation Therapy). Minutes before she expired, her temperature was normal, her blood pressure was normal but her pulse was 150(tachycardia). Her heart was racing to keep up with the lack of brain function and finally quit. The white matter disease that Ann experienced and caused her death was a result of Whole Brain Radiation and Chemotherapy(Taxol & Carboplatin). Believe me, a slow, arduous, neurological death is not preferable to a cancerous one.

Even the infamous study performed by Dr. Roy Patchell, et al, in the early '90's was recognized incorrectly in the radiation oncology profession. The study was thought to have been the difference between surgical resection of brain tumor alone, vs. surgical resection & whole brain radiation. It was not. It was a study of whole brain radiation of a brain tumor alone, vs. whole brain radiation & surgical resection. The increased success had been the surgery. And they measured "tumor recurrance", not "long term survival". Patients experiencing any survival were dying from Radiation Necrosis(starting within two years of whole brain radiation treatment) and documented as "complications of cancer" not "complications of treatment". There was less "tumor recurrance" but not more "long term survival". In my wife's case, tumors recurred.

Posts: 1
Joined: Aug 2012

I can hardly hold back the tears as I read your posting. My husband is going through almost the exact scenario as your wife. Eighteen months ago he was diagnosed with lung cancer (non smoker) with five brain mets. He went through WBR and chemotherapy treatments of Taxol and Carboplatin. He followed up with Tarceva and one treatment of targeted radiation last month for three new brain mets. He is now bed ridden and sleeps all day and night. I am trying to take care of him while working from home with the help of Hospice. Somehow, I think he would have been happier with a shorter life and have been able to ride his Harley for a while longer. It is so hard to watch him decline like this. He is only 64.

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

My son is dying at home with me, his sole caregiver...well, my family is a huge emotional support and hospice is assisting but not that much, per my request. He had focal radiation, two craniotomies, temodar, and then a clinical trial with Sutent (totally inefffective), carboplatin, etopside and mephalon with the blood brain barrier disrupter, mannitol, and then finally carboplatin and avastin. He' has some necrosis, several brain bleeds, but his tumors are smaller. A lot of good that did. He also has extensive blood clots in spite of being on blood thinners. And steroid induced diabetes. And shingles with neuropathy. And now c-diff. He is totally bedridden, totally incontinent, and can only raise his right hand with a lot of effort. He is so incredibly weak--he can barely whisper one or two words every now and then. He is on high levels of morphine to control pain. In spite of all of this, he is totally aware of his situation and what is going on around him.

His situation is a classic case of either the tumor killing you or the treatments killing you. I don't know what caused which problem. Did the tumor or the avastin cause the bleeds? His tumor bled before he did avastin, but much more afterwards. Did the radiation shrink the tumor, or did it cause necrosis? I HATE how he is, but I don't know what we could have done differently. Every choice we made was made with much consideration, research, prayer, opinions from experts, effort, energy, talking talking talking.....trying to decide.

I'm so sorry for all of us....for our loved ones who are fighting and we caregivers who are dying right alongside them.

Posts: 79
Joined: Jul 2011

sending you strength and hugs. You are a wonderful woman and caregiver. Thank you for sharing your battle with us...

Posts: 79
Joined: Jul 2011

I am so sorry you and your husband are dealing with this.
After whole brain rads for brain cancer, my hub developed dementia, incontinence and falls even with a walker. He could not move his feet. As I was starting to look for a nursing home for him, a doc suggested that a shunt might help him. Others on his team argued that it would do no good.

He has only fallen twice since the shunt was put in, down from about 10 times a day. His incontinence has totally ended, thank God, and he is much more aware of his surroundings. The light in his eyes is on again.

I don't know if your man is a candidate for a shunt but google brain shunt and see what you can find...

You are in my prayers,

edslas's picture
Posts: 19
Joined: Dec 2010

Last February I finished a year of temodar that followed 6 weeks of radiation. When this came about it was presented as the 'only modern medicine treatment'. I had little time to think or study the issue. Now I am in a 'wait and see mode'. I will have some hard decisions to make when the doctors 'see' something after the waiting. Once these brain tumors start growing back, there is little hope of survival, and a major loss of quality of life. I am struggling with what I am to to on occurrence. My gut reaction is turn my nose at modern medicine ant let life take it course. Stories like this reaffirm this path. Why spend thousands of dollars and make my remaining days miserable, while spending thousands of dollars and imposing on my friends and family? For a few extra months? There seems to be a stigma that this path would be 'giving up', but sitting here today, seems to be the most natural thing to do.

Posts: 44
Joined: Mar 2012

I chose a clinical trial that worked. I had a 3cm GBM, my trial left me with virtually no side affects, high blood pressure, and I am completely back to normal.

Posts: 1
Joined: Sep 2012

First I am so sorry to hear of all the difficult times that each of you is going through. Cancer stinks and I pray that better treatments are available in our lifetime. I am trying to learn about long term radiation damage or over-radiation related to brain cancer and in particular side effects from treatment in the late 70's/early 80's. My brother is in his late 50s and as a 26 year-old was treated for a medulloblastoma via surgery/radiation/chemotherapy. He subsequently had exploratory brain surgery due to seizures in the early 90's with a diagnosis of long-term radiation damage. The second brain surgery further damaged his cognitive abilities but the seizures were alleviated through medication. Recently his seizures recurred and he has further declined physically and cognitively. This year he has been hospitalized, has had several MRIs and underwent rehabilitative therapy. He is doing somewhat better, but still has various problems on different days. Because I am not his caregiver, I only have second hand knowledge of his medical treatment and diagnosis. I am told that that his current neurologist says "his brain cells are slowly dying due to over radiation poisoning". I want to learn more about this diagnosis and I guess I am surprised that I have not heard about it before, or that I haven't seen it in the news. Maybe it is because many people do not survive long enough for the treatment effects to be so severe. Any information you can provide including directing me to other parts of the website or other websites will be appreciated. Thank you & God bless - a sister who loves her brother

Posts: 1
Joined: Apr 2013

Scott,  what clinical trial did you do? Thanks.

Anonymous user (not verified)

My husband (67) had a craniotomy to remove a brain tumor (melanoma lung and brain) and then WBR in October 2010.  The radiation was completed in December 2010.  He began chemo but the response wasn't good, so he was enrolled in a research project for melanoma patients.  Due to the reasearch drug (Yervoy - which is now FDA approved), he has been in remission for the past year.  However the side affects of the radiation are horrible.  His ability to walk has diminished to the point he is now in a wheelchair.  His hearing is impaired and his cognitive ability is very diminished.  The radiation oncologist tells us because they see no more tumor, they believe this to be late onset side effects from the radiation.  They also say there is no treatment and they don't know how debilitated he will become.  The hope is that side effects will "level off".  I don't know what the future holds and I don't know if there's anything I can do.  I want to be sure I've looked at everything possible to help him.

Has anyone been through this after WBR and does anyone have any suggestions? 

Thank you for any ideas you may offer.


Posts: 47
Joined: Sep 2013

I'm having Rad Necrosis issues now as I type this. Three MRI's ago it was clear. Then the next one showed something. Had to wait 6 weeks and did another to see if there was growh to determin if I had another tumor or if it was Necrosis. It appears to be Necrosis. Will have another MRI in December. I had local rad and only one single treatment. This is a very interesting thread. I started chemo on Carboplatin, I had a BAD reaction to it, changed to Cisplatin to finish out my chemo. Then went on to pill form Xalkori (Crizotnib) for A.L.K. mutated Adnocarcinoma lung cancer for one year. I'll be done with pill chemo in a few weeks thank god. It's a rare form of carcinoma. Only about 5% of people with Adocarcinoma get it with the A.L.K. mutation. I don't like this Necrosis BS. I want it gone but do not want to go through brain surgery again.

Posts: 3
Joined: Jun 2016

I feel so sad but also angry about  what your wife had to  go through. I refused chemotherapy. I also put off radiation for my GBM Brain Tumor for 6 months after my surgery. I went against the doctors recommendations, and decided to help my body in a more healthy way. I must have done something right, I am here today looking forward to my 19th anniversary in Oct. My surgery was in Oct. 1997. I also only did the radiation while I was on a nutritional protocol, which included a natural anti inflammatory supplement .Steroids are terrible for the body. I was 48 when I had my brain tumor removed . I just had my 67th birthday this past May. I have been blessed for sure, and feel I played a part in those blessings coming my way through the choices I made.

Posts: 9
Joined: Oct 2016

I got necosis issues following targeted radiation treatment for a 4cm brain tumor, secondary to breast cancer. I was given Avastin, and that stopped my necosis right in its tracks. In fact, three years after the fact, my brain is still showing slow, but steady, improvement.

Posts: 1
Joined: Aug 2018

My girlfriend has had 2 brain tumors in last 8 years. The last one was surgery and radiation treatment. A few months after radiation treatment was over all these horrible symptoms started. She turned into a totally different person. Severe anger, low heart rate, muscle weakness, losing visio, seizures, list goes on and on. Almost 2 years after radiation treatment she is now diagnosed with severe brain necrosis and little to no options for survival left. I don’t know what’s worse, watching her suffer every single day, or knowing she will die soon. She’s only 40 years old. The hospital she was treated at, in my opinion ignored the necrosis and now it’s far progressed. All of you going through this, or have a loved going through this, I pray for you.

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