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After effects of full brain Radiation

rosie43539's picture
rosie43539
Posts: 56
Joined: Mar 2003

My husband has Stage 4 renal cell cancer with lesions on his lung, liver and brain. He underwent full brain radiation but had no luck with it. From what I have read, the effects can last for a long time and new ones develop for years afterward. I would like to hear from anyone who has had full brain radiation so maybe I can be prepared for what might happen next.
Rosie

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gdpawel's picture
gdpawel
Posts: 538
Joined: May 2001

The initial approach to using radiation postoperatively to treat brain metastases, used to be whole brain radiation, but this was abandoned because of the substantial neurological deficits that resulted, sometimes appearing a considerable time after treatment. Whole brain radiation was routinely administered to patients after craniotomy for excision of a cerebral metastasis in an attempt to destroy any residual cancer cells at the surgical site. However, the deleterious effects of whole brain radiation, such as dementia and other irreversible neurotoxicities, became evident.

This raised the question as to whether elective postoperative whole brain radiation should be administered to patients after excision of a solitary brain metastasis. Current clinical practice, at most leading cancer centers, use a more focused radiation field that includes only 2-3cm beyond the periphery of the tumor site. This may involve therapy once a day for about six weeks and allows radiation up to 60gy. This begins as soon as the surgical incision has healed.

Many metastatic brain lesions are now being treated with stereotactic radiosurgery. In fact, some feel radiosurgery is the treatment of choice for most brain metastases. There are a number of radiation treatments for therapy (Stereotatic, Gamma-Knife, Brachyradiation and IMRT to name a few). These treatments are focal and not diffuse. Unlike surgery, few lesions are inaccessible to radiosurgical treatment because of their location in the brain. Also, their generally small size and relative lack of invasion into adjacent brain tissue make brain metastases ideal candidates for radiosurgery. Multiple lesions may be treated as long as they are small.

The risk of neurotoxicity from whole brain radiation is not insignificant and this approach is not indicated in patients with a solitary brain metastasis. Observation or focal radiation is a better choice in solitary metastasis patients. Whole brain radiation can induce neurological deterioration, dementia or both. Those at increased risk for long-term radiation effects are adults over 50 years of age. However, whole brain radiation therapy has been recognized to cause considerable permanent side effects mainly in patients over 60 years of age. The side effects from whole brain radiation therapy affect up to 90% of patients in this age group. Focal radiation to the local tumor bed has been applied to patients to avoid these complications.

Radiation necrosis may result from the death of tumor cells and associated reaction in surrounding normal brain or may result from the necrosis of normal brain tissue surrounding the previously treated metastatic brain tumor. Such reactions tend to occur more frequently in larger lesions (either primary brain tumors or metastatic tumors). Radiation necrosis has been estimated to occur in 20% to 25% of patients treated for these tumors. Some studies say it can develop in at least 40% of patients irradiated for neoplasms following large volume or whole brain radiation and possibly 3% to 9% of patients irradiated focally for brain tumors that developed clinically detectable focal radiation necrosis. In the production of radiation necrosis, the dose and time over which it is given is important, however, the exact amounts that produce such damage cannot be stated.

Late effects of whole brain radiation can include abnormalities of cognition (thinking ability) as well as abnormalities of hormone production. The hypothalamus is the part of the brain that controls pituitary function. The pituitary makes hormones that control production os sex hormones, thyroid hormone, cortisol. Both the pituitary and the hypothalamus will be irradiated if whole brain radiation occurs. Damage to these structures can cause disturbances of personality, libido, thirst, appetite, sleep and other symptoms as well. Psychiatric symptoms can be a prominent part of the clinical picture presented when radiation necrosis occurs.

Aggressive treatment like surgical resection and focal radiation to the local tumor bed in patients with limited or no systemic disease can yield long-term survival. In such patients, delayed deleterious side effects of whole brain radiation therapy are particularly tragic. Within 6 months to 2 years patients can develop progressive dementia, ataxia and urinary incontinence, causing severe disability and in some, death. Delayed radiation injuries result in increased tissue pressure from edema, vascular injury leading to infarction, damage to endothelial cells and fibrinoid necrosis of small arteries and arterioles.

Again, whole brain radiation is the most damaging of all types of radiation treatments and causes the most severe side effects in the long run to patients. In the past, patients who were candidates for whole brain radiation were selected because they were thought to have limited survival times of less than 1-2 years and other technology did not exist. Today, many physicians question the use of whole brain radiation in most cases as one-session radiosurgery treatment can be repeated for original tumors or used for additional tumors with little or no side effects from radiation to healthy tissues. Increasingly, major studies and research have shown that the benefits of radiosurgery can be as effective as whole brain radiation without the side effects.

Sometimes, symptoms of brain damage appear many months or years after radiation therapy, a condition called late-delayed radiation damage (radiation necrosis or radiation encephalopathy). Cerebral radiation necrosis is a debilitating, potentially life-threatening and increasingly frequent problem in patients with brain tumors. These symtoms can be from progression of cancer or it can be caused by the side effects of whole brain radiation. However, the FDG-Pet Scan can provide a reliable technique for diagnosing tumor recurrence from necrosis. Hyperbaric Oxygen Therapy (HBO) is now a useful terapeutic option for patients with confirmed symptomatic radiation necrosis.

The most common condition treated at some Hyperbaric Oxygen Therapy Centers is tissue injury caused by brain radiation therapy for cancer. Wound healing requires oxygen delivery to the injured tissues. Radiation damaged tissue has lost blood supply and is oxygen deprived. Chronic radiation complications result from scarring and narrowing of the blood vessels within the area which has received the treatment. Hyperbaric Oxygen Therapy provides a better healing environment and leads to the growth of new blood vessels in a process called re-vascularization. It also fights infection by direct bacteriocidal effects. Using hyperbaric treatment protocols, "most" patients with chronic radiation injuries can be cured.

sleepless in jersey
Posts: 185
Joined: Feb 2011

I know this is a 7yrs ago post don't know if you still come on? Have some questions for you as to Mom having effects we think from WBR will get a better idea on Monday or Tuesday hopefully. Mom's getting scans today.
Hope to hear from you!

hamptonmf
Posts: 1
Joined: Nov 2015

Hi,

My mom had stereotactic surgery to treat a lesion on her temporal lobe and this was followed up with 15 treatments of WBR (I don't know the dosage) prophylacticly. She has been experiencing severe weakness (no longer able to walk), fatigue, loss of appetite, confusion, difficulty with abstract thought, mood swings, and pain ever since. This is now almost 10 weeks out. Is the information in this comment still current? We were told that there was very little chance of any negative side effects from the WBR and most of those were associated with individuals who had undiagnosed Alzheimers.

 

Wondering if anyone else is seeing things like this in themselves or loved ones.

 

Thanks 

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dkparm
Posts: 1
Joined: Jan 2012

Hello gdpawel,
I would like to know how you know so much about the whole brain radiation. Are you a doctor? Also, I am researching hyperbaric chamber treatment for this. My husband had it a few months ago and after having read what can go on in the future, I am getting a little scared. Right now he is doing ok, and is actually improved from the lymphoma that was in his spinal fluid and CNS. Do you know anything about the hyperbaric oxygen therapy? I see pros and cons. I just need some qualified information at this point and don't plan to jump into ANYTHING ever again without doing massive research. Thanks very much.
DPW

wj01
Posts: 1
Joined: Jun 2013

Dear All,

My dad had wholebrain radiation prophylactically 25Gy and now has very severe loss of appetite, somnolence and fatigue and weakness.

Anyone has experienced this? Does it subside spontaneously? How long does it last?

He started these symptoms 2 weeks after radiotherapy completion and it has been now 10 weeks after completion of radiotherapy and he still has the symptoms

 

thx

wj01

 

njecab
Posts: 6
Joined: May 2013

hi wjo1,

Even my grandpa had same problm with severe loss of appetite ,fatigue, weakness. We didn go for anymre radiation, instead we went for a new treatment SPMF therapy. which is a non invasive and without any side effects.. Now we are happy to see him as he s doing well and more energetic. 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2919998/

subie
Posts: 3
Joined: Feb 2017

my dad is going through this at the moment, 20kg's down and no sign of him starting to eat again

Can i ask you if your dad was able to come back from this?

thank you

SVV
Posts: 1
Joined: Jan 2016

Hello-

   My mom was diagnosed with small cell lung cancer in April.  She did 6 weeks of lung radiation and 4 rounds of chemotherapy.  She handled it very well.  The doctors had advised her to do whole brain radiation for preventative measures.  She said she did not want to do it.  But after a few office visits, the doctors reassured her that she would have very few side effects and it would give her a better survival rate.  So two weeks after her last chemotherapy, she started 2 weeks of whole brain radiation.  By the 3rd day, we noticed changes in my mom.  Her hearing got really bad, eye sight diminished, food started not tasting right, and complained of headaches.  We immediately talked to the radiation oncologist about her symptoms.  He told us that it wasn't from her brain radiation, it was from delayed effects of her chemotherapy.  Truthfully, I didn't believe it.  Almost immediately after finishing her 2 weeks of brain radiation, she spent most of her days and nights in bed.  The fatigue was horrible!  Nothing tasted good.  Her appetitite went to nothing.  Then if she ate, she would throw it back up.  Several times she had to be taken to the ER.  They scanned her from head to pelvis looking for the answers to why she could no longer eat.  No cancer was ever found after multiple tests.  Finally, one of the doctors had to admit that it had to be from the complications of her whole brain radiation!!!!  We knew that because she was completely fine until they radiated her brain!  We buried my mom on Tuesday.  The worse day of our lives.  Not only did we have to bury her, but we had to watch her die a painful death!  She basically starved to death!  Please do your research before you or a loved one ever allows this to happen again.  The doctors told us that she would have a little fatigue, hair loss, and some short term memory loss.  I think they left a few things out!  Heartbroken and angry......

subie
Posts: 3
Joined: Feb 2017

Hi,

I have just read your post and it is the exactly same story as what has and is currently happening to my dad.........after jumping up and down, he has finally been admitted into hospital and has had a nasal feeding tube put in......i am so scared that the damage caused by the whole brain radiation which is causing him to have, NO appetite at all, will kill him.......Is the tragic end that your mum came to, inevitable for my dad 

 

SL1974
Posts: 2
Joined: Mar 2017

Has your dad got any better with the feeding tub?  I am at a loss at to what to do for my mom, She slowing starving herself. 

SL1974
Posts: 2
Joined: Mar 2017

This sounds exactly like what my mom is going thur now.  It is the same story i am going thur with her, I am at a loss to know what to do.  The radiation was completed end of Nov, and she gets worse and worse, been in the hospital 3 times.  she has lost over 60 pounds. She gets so confused and now barely can get around.  She is worse with the 10 rounds of radiation on the brain, which she only had lung cancer, but to prevent it coming into the brain. I wish she never had it done.  I am watching her slowly slip away.   The radiation dr has washed his hands and her cancer dr kinda admit she was given to much, but he don't know what to do for her.

 

Haps
Posts: 1
Joined: May 2016

I do not usualy sign up or post any place on the Web.  But this topic is to fresh on my mind and heart.  My husband was diagnosed with Stage 4 Lung cancer and he  did the chemo.  On the next scan it has spread to his lympnodes and his Brain.  I read up on the full brain radiation and was so scared and didn't want him to do it.  When we went to  the specialist she assured me that all I read on the internet was WRONG... so we went for it.... My husband was different.  He couldn't eat or drink much at all.  Like the other posts above the food was to nasty tasting so he didn't eat.  He then continued his chemo for lungs and other masses.  Then almost a year later they found more in the brain.  So, they sent us back to that same specialist.  She wanted to do another round of full brain radiation only this time she said, well some of those things you asked about on the first visit will probably be true.  He wanted to do it, so we did it.  I don't wish to scare anyone but I am sure not going to lie. It was the worst decision ever.  He started having seizures and alot of the other things that they say will happen. They ALL happened.  Everything it says is what happened to him.  He finally just went to bed and refused food and I lost my best friend on Christmas Eve.  He really was gone after the first round of brain radiation, and I had to watch him struggle to eat, drink, walk, talk, think and love.  I would rather of had my husband for 4 to 6 months than the stranger I had for one year and one day.  If the doctor would have been honest with us and said YES those things on the interent are true, we would of made a much better choice, but we believed and trusted her.  I would do it different if I had a chance.  The only honest answers came from a friend that lost her husband to the same type of cancer.  She was spot on and I was glad she was honest with me on what to watch for.

I don't wish to talk anyone out of something that might make your special person live longer.  But what we endured was NOT living.

 

subie
Posts: 3
Joined: Feb 2017

My dad (very fit 74yr old, who played gold 3 days/week and walked over 30-km per/week) finished 10 days of whole brain radiation as a preventative measure after a SUCCESSFUL round of chemo and radio to irradicate SMALL CELL LUNG CANCER, which was contained to one lung.

All went well until about 2 weeks after the whole brain radiation, when he lost his appetite totally and completely.......this lead to dehydration, pneumonia, and a steady spiral into ill health.

The medical professionals, dont seem to understand that my dad isn't deliberately not eating and they are also hesitant in putting him on any kind of tube feeding. 

This has gotten to the stage that my dad, wont get out of bed and is in affect dying of starvation.

Yesterday i demanded that he be admitted into hospital and be fed through a nasal tube, which is what happened, thank heavens.

Today he is feeling a bit better, he has lost 20kg's in a month and I am perplexed as to why the medical people are looking at this situation as if they have never seen it before and somehow this is a choice my dad is making not to eat. (which is clearly not the case, as i can see by the other posts in this forum)

My stance comes with the hope that once dad has some nutrition in him, he may feel well enough to start eating of his own accord.... Fingers Crossed

I would really like to know, is the damage that has clearly been done to his brain, repairable or is his ultimate demise inevitable?????

I would appreciate any feedback ...... as my anxiety levels are through the roof

 

bethtom01
Posts: 1
Joined: Mar 2017

My husband is 61 years old and had a Diffuse Intrinsic Pontine Glioma when he was 13-1/2 years old, he had over 75 radiation treatments at Mayo clinic, it was a miracle he survived as the survival rate for this type of tumor is very low. He suffered a stroke 3 years ago and recovered well with weakness on his left side and vision problems. For the past 6 months I have noticed some disturbing symptoms, he falls at least a couple of times a day, has memory problems, trouble verballizing when he speaks, extreme fatigue (he sleeps alot during the day), and weakness. We have had him in to the doctor for several check ups this year but the doctor does not seem that concerned, he put him on a anti-depressant. I have tried doing some research on radiation necrosis and he does seem to have alot of the symptoms. I would appreciate any feedback..

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