Dementia from Whole Brain Radiation?

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Dementia from Whole Brain Radiation?

by willxyz on Mon Jul 07, 2008 12:00 AM

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My wife was given whole brain radiation,  which didn't stop the mets from growing, later  got targeted radiation, which has done better.

Online I read (in the Merck Manual)  that severe dementia (like Alzheimers) is a typical side effect, (50% at 1 year, 70% at 2 years) 

However, our radiation oncologist says dementia  is  uncomon and not to worry about it.  Has anyone had any experience with side effects from whole brain radiation?

Also my wife is walking slower and slower and complains of weakness in her legs.  She prefers to hold my arm as we walk for stability.  Is this due to the whole brain radiation too?  

RE: Dementia from Whole Brain Radiation?

by Lorre_G on Mon Jul 07, 2008 12:00 AM

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Radiation Therapy Side-Effects

There are several types of radiation therapy. Side-effects depend on the type of radiation you receive and the total dosage. Your physician and nurse can tell you which ones you are likely to experience. The following are suggestions for living with some of the potential side-effects of conventional radiation therapy.

Hair loss

Hair loss will probably be the first side-effect you experience. It occurs about two weeks after you begin radiation therapy. Hair loss is usually over the area being treated, but some people lose all of their hair. Hair loss is sudden, and it usually falls out in clumps over a short period of time. This can be very upsetting unless you are prepared for it. Hair loss is usually temporary your radiation oncologist can advise you about this. Your hair will begin to grow back within weeks to months following therapy, but the new growth might not be the same texture or color as your original hair. Permanent hair loss over the area being treated can occur with higher doses of radiation.

Management of hair loss

To minimize hair loss, cut your hair short before you begin treatment. This reduces the weight on the hair shaft. Satin pillowcases help lessen tangling while sleeping. Use an infant comb and brush set when your hair begins to grow back. Don't over shampoo your hair. Use a mild shampoo, such as a baby shampoo. Don't use abusive products on your hair, such as hot rollers, curling irons, hair sprays or dyes.

Consider purchasing a wig, or buy some scarves, turbans or caps before starting radiation. You might be able to purchase a wig from your own hair stylist. Wigs can also be made from your own hair. Hair pieces and wigs might be tax-deductible or covered by your insurance. Get a prescription for a "cranial prosthesis" (wig) from your physician. Recently, specialty stores have been established to help persons undergoing radiation and chemotherapy. These stores offer a variety of items and devices to help make treatments easier to live with. Ask your nurse, social worker or local cancer society representative if they can refer you to a store in your area.

Skin irritation

During radiation, the skin in the area being treated can become reddened, flaky and itchy. Don't try to treat these problems by yourself. Notify your physician immediately of the irritation.

Management of skin irritation

There are several things you can do to try to prevent this side-effect. Use a mild shampoo when you wash your hair and limit your hair washing to two or three times a week at most. Don't use abrasive hair treatments, such as hot rollers, conditioners, hair sprays or dyes. Don't use anything on your scalp unless your doctor approves it. Lotions and oils may increase the irritation. Corn starch can be used to decrease itching, if approved by your physician.

Stay out of the sun as much as possible and wear a hat or scarf when you are outside. Don't use hot water bottles, icepacks or heating pads on your scalp. Don't use tape, gauze or bandages on your scalp unless your physician tells you it's okay to do so.

Hearing problems

In addition to skin irritation, you might have some temporary hearing difficulties. This can be due to hardening of the wax in your ears if your ears are in or near the area being radiated. Notify your physician if you experience a decrease in your hearing.

Nausea or vomiting

Nausea caused by radiation therapy to the brain isn't very common, but it can occur following a treatment session.

Management of nausea and vomiting

If you experience nausea and/or vomiting after a treatment session, your doctor might prescribe a medication called an antiemetic. These are generally very effective at minimizing or controlling nausea. Antiemetics can also be used for "anticipatory nausea" if you feel sick to your stomach prior to treatment.

Relaxation, imagery and biofeedback are techniques that can be used with or without anti-emetics, to help you control this side-effect. Ask your physician or nurse where you can learn about these methods.

Additional suggestions:

Relax. Don't assume you'll be sick.

Avoid eating for a few hours before treatment, if you experience nausea following the sessions.

Stay away from fatty or spicy foods, sweets and strong smelling foods.

Ice chips ginger ale unsalted pretzels plain crackers and/or cool, bland foods can help combat nausea.

Drink plenty of water.

Plan to eat your meals when the nausea is the least troublesome.

Changes in appetite

Your appetite may increase or decrease during the course of treatment. Some people lose weight and continue to lose weight for several weeks after finishing their treatments. Others gain weight, usually due to the corticosteroids they are taking.

Management of appetite changes

Whether your appetite has increased or decreased, it is important to eat a balanced diet. Small frequent meals may be easier for you. Eat when you're hungry rather than at set mealtimes.

If you are losing weight, try adding nutritional supplements to milk shakes or malts. Eat what appeals to you. Have snacks handy to nibble on throughout the day. Liquids may be more tempting than solids.

Weight gain due to steroids is generally unavoidable. Watch what you eat nibble on healthy foods such as celery or carrots. Choose lower calorie, lower fat foods, such as a chicken breast instead of hamburger. Most people lose weight once they no longer need to take steroids.

Drowsiness and fatigue

Most people experience some degree of fatigue and drowsiness during radiation therapy. The severity of these symptoms depends on the state of your health before the treatment. See the special section on fatigue later in this chapter. However, alert your family: if your drowsiness is of sudden onset or is accompanied by confusion, have someone call your doctor immediately. If they are unable to awaken you, call for emergency help.

Decreased sex drive (libido)

Desire for sexual activity might be lowered because your hormone levels are affected, because you are stressed, or because you are just too tired.

Management of decreased sex drive

Share your thoughts with your partner. Explain that this is a side-effect of treatment, not a change in your feelings, and that your sexual desires will likely return to normal once treatment ends. Now is a time for closeness: hold hands spend quiet time together. If you or your partner is concerned, speak to a counselor or social worker.

Neurologic (brain-related) effects

Potential side-effects of radiation therapy are classified into three groups: acute, early delayed (also called sub-acute), and late.

ACUTE REACTIONS

Acute reactions occur during or immediately after radiation is finished. These reactions are caused by radiation- induced brain swelling (edema).

Symptoms can mimic the symptoms of your brain tumor, like speech problems or muscle weakness or those of increased intracranial pressure, such as headache, nausea, or double vision.

Management of acute reactions

Acute reactions are temporary and are usually relieved by corticosteroids such as dexamethasone. Often, steroids are prescribed to be taken during the entire treatment so that acute side-effects are avoided or minimized. The steroid dose is gradually reduced and discontinued when treatment is completed. Steroids are discussed more fully in Chapter 12.

EARLY DELAYED (SUB-ACUTE) REACTIONS

This group of reactions occurs a few weeks to a few months after completion of therapy, most commonly between one and three months. Symptoms include loss of appetite, sleepiness, lack of energy, as well as an increase in pre-existing neurologic symptoms.

Some of these reactions are thought to be due to a temporary disruption of myelin formation (demyelination). Myelin is a substance that insulates the nerves and speeds up nerve impulses. The symptoms are usually temporary lasting about six weeks, the length of time it takes for myelin to repair itself. In some cases, however, recovery may take several months.

Since the brain lacks an effective lymph system, dead tumor cells are cleared away very slowly. A rapid build-up of dead cells can lead to swelling which might produce a temporary increase of symptoms. CT scans taken shortly after treatment might show changes that are difficult to distinguish from tumor growth. Repeat CT or MRI scans are often necessary to clarify the cause of the symptoms.

Management of early delayed reactions

Notify your radiation oncologist or your primary doctor if you notice any of the symptoms listed. Early delayed reactions are usually treated with steroids and most of these reactions are self-limiting, going away with minimal treatment. However, they can become life-threatening if they aren't treated properly. It is very important for you to tell your doctor if you have any of these reactions so that he/she can properly monitor and treat you.

Leukoencephalopathy is a type of early delayed reaction affecting the white matter (mylenated tissue) of the brain. It can occur when dead tumor cells, radiation therapy, or chemotherapy drugs irritate the white matter. The severity of the symptoms increases with the amount of damage. Leukoencephalopathy may be reversible and is usually treated with steroids. Some researchers are attempting to treat this effect with hyperoxygenation therapy in the hope that increasing the amounts of oxygen in the brain will aid in healing brain cells which may not be as seriously damaged as others.

is a type of early delayed reaction affecting the white matter (mylenated tissue) of the brain. It can occur when dead tumor cells, radiation therapy, or chemotherapy drugs irritate the white matter. The severity of the symptoms increases with the amount of damage. Leukoencephalopathy may be reversible and is usually treated with steroids. Some researchers are attempting to treat this effect with hyperoxygenation therapy in the hope that increasing the amounts of oxygen in the brain will aid in healing brain cells which may not be as seriously damaged as others.

LATE REACTIONS

These reactions are due to changes in the white matter and death of brain tissue caused by radiation-damaged blood vessels. Symptoms can occur months to years after therapy is completed. These long-term effects are permanent and can be progressive. Symptoms vary from mild to severe and include: decreased intellect, memory impairment, confusion, personality changes, and alteration of the normal function of the area irradiated.

It is sometimes difficult to diagnose late delayed reactions. CT and MRI scans are often unable to distinguish between new tumor growth and radiation changes. PET scanning might be helpful, but is not totally accurate. A biopsy of the area may be the only way to determine whether you have radiation changes to your brain or new tumor growth.

Management of late delayed reactions

Mild reactions may be treated with steroids. Severe reactions such as tumor necrosis may require surgery to remove the dead tissue. Some researchers are investigating the possible benefits of hyperoxgenation therapy in the hope that increasing the amounts of oxygen in the brain will aid in healing brain cells which may not be a seriously damaged as others. Still other researchers have attempted to treat the brain with blood thinners, such as heparin, but this has not proven successful.

The need for a second surgery to remove necrotic tissue is common in patients who receive very high doses of radiation, such as that used during interstitial radiation or radiosurgery. Research into preventing this type of injury is underway.

Other reactions

Oncogenesis, the development of another tumor, is now a recognized, although rare, possible long-term side-effect of radiation.

the development of another tumor, is now a recognized, although rare, possible long-term side-effect of radiation.

Radiation therapy might also cause pituitary-hypothalamic dysfunction (changes in normal hormone levels) leading to problems with your thyroid, sugar metabolism, fertility, or ability to process water.

Because their brains are still developing, children are extremely susceptible to the side-effects of radiation. Treatment with radiation is delayed as long as possible, or at least until a child is three years old.

Recent research has focused on the long-term effects of radiation in children. These include physical consequences, and psychological, social and educational effects as well. Information about this research can be obtained through medical literature searches, such as Medline.

RE: Dementia from Whole Brain Radiation?

by daybyday on Mon Jul 07, 2008 12:00 AM

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On 7/7/2008 willxyz wrote:

My wife was given whole brain radiation,  which didn't stop the mets from growing, later  got targeted radiation, which has done better.

Online I read (in the Merck Manual)  that severe dementia (like Alzheimers) is a typical side effect, (50% at 1 year, 70% at 2 years) 

However, our radiation oncologist says dementia  is  uncomon and not to worry about it.  Has anyone had any experience with side effects from whole brain radiation?

Also my wife is walking slower and slower and complains of weakness in her legs.  She prefers to hold my arm as we walk for stability.  Is this due to the whole brain radiation too?  


My husband had whole brain radiation June and July 2007, 33 cycles. He actually felt pretty well during the treatments and seemed to experience the side effects weeks and up to 2 months later.  He was also very unsteady on his feet, walked much slower and cautiously, had balance problems, hair loss did not occur until the last week of radiation.  He also felt woozy, lacked concentration, very fatigued and had a great deal of weakness in his legs.  The hair came back, much coarser than before but it is growing quickly now.  As far as mental changes, one year out and the only thing we have noticed is a very slight occasional short term memory loss.  Most of the other symptoms disappeared on their own over time.  We did start taking walks about the third week after his final treatment to strengthen his leg muscles which seemed to improve his balance at the same time.  The walking helped him so much I would highly recommend doing this.  We started out very small and every day added at least 5 more steps.  Today (one year out from radiation) he is walking 1 1/2 mile every day!!!!!  We continue to add at least 5 steps each day.  The whole brain radiation was very scary to us but it was our miracle.  He had non-hodgkins lymphoma of the brain, chemo (high dose methetrexate) failed after 5 months.  The whole brain radiation put him into COMPLETE remission and he has had totally clear MRI's since last July with no enhancements or signs of any tumor regrowth. He continues to exercise his brain by doing puzzles, reading, computer work, etc.  Good luck to you and your wife!  Stay strong, don't give up, miracles do happen. 

RE: Dementia from Whole Brain Radiation?

by suzthebrit on Mon Jul 07, 2008 12:00 AM

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Is your wife taking Decadron by any chance? My Dad had brain radiation and has had early signs of dementia from it. He knows it too but there is nothing he can do to help him remember. Although he has finally given in and decided that he needs to carry a notebook around so he can write things down.

The reason I ask about Decadron is that my Dad had no weakness from the readiation but the steroid did replace his muscle with fat so he had severe weakness in his legs and couldn't get up and down stairs. He has recently been having PT and is getting much stronger.

Hopes this helps

Good Luck
Suzy

RE: Dementia from Whole Brain Radiation?

by jackiekay on Tue Jul 08, 2008 12:00 AM

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Lorre

Thank you so much for taking all the time you do to share information with the rest of us.  It is always very helpful.  I find your contributions very valuable.

Jackiekay

RE: Dementia from Whole Brain Radiation?

by oneGaia on Sat Jul 19, 2008 12:00 AM

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On 7/7/2008 willxyz wrote:

My wife was given whole brain radiation,  which didn't stop the mets from growing, later  got targeted radiation, which has done better.

Online I read (in the Merck Manual)  that severe dementia (like Alzheimers) is a typical side effect, (50% at 1 year, 70% at 2 years) 

However, our radiation oncologist says dementia  is  uncomon and not to worry about it.  Has anyone had any experience with side effects from whole brain radiation?

Also my wife is walking slower and slower and complains of weakness in her legs.  She prefers to hold my arm as we walk for stability.  Is this due to the whole brain radiation too?  


Yes! My husband had whole brain radiation 2001 and about 3 years I noticed a significant decline in cognitive functioning.  The doctors don't forewarn you about this. His was done due to small cell lung cancer.  He started having symptoms very similar to Alzheimer's, & I didn't know what was going on.  Finally I found (please google) the Alzheimer's spouse message board.  I since learned that with whole brain radiation dementia is almost always inevitable. Correct treatment is not whole brain radiation, for most brain tumors.  I insisted 3 years ago that he get a brain scan, due to extreme confusion & I thought it was a brain tumor.  The radiologist told me it had aged my husband's brain 10 - 15 years & all people age differently. LIE. The good brain cells were killed. 

RE: Dementia from Whole Brain Radiation?

by BaptistPastor on Wed Feb 25, 2009 12:00 AM

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On 7/7/2008 willxyz wrote:

My wife was given whole brain radiation,  which didn't stop the mets from growing, later  got targeted radiation, which has done better.

Online I read (in the Merck Manual)  that severe dementia (like Alzheimers) is a typical side effect, (50% at 1 year, 70% at 2 years) 

However, our radiation oncologist says dementia  is  uncomon and not to worry about it.  Has anyone had any experience with side effects from whole brain radiation?

Also my wife is walking slower and slower and complains of weakness in her legs.  She prefers to hold my arm as we walk for stability.  Is this due to the whole brain radiation too?  


 

Hi,

My mother had whole brain radiation in May 07. She has experienced severe dementia from it. The doctor who was leading her brain cancer team has written her off saying there is nothing he can do. Her symptoms were slight at first, then beginning in May of 08, she went down hill quickly. She seemed to "bounce back" around Thanksgiving and was actually very good mentally through the holidays, although her mobility has not returned. This month (Feb.09) she seems to be slipping again. One of her physical therapists told me she has perseveration, which is a problem with brain connections that causes them to repeat the last thing they hear over and over. She is very agitated, doesn;t understand what is happening to her. I know they say this doesn't happen to everyone, but we know of three other cases at the hospital where she received her treatment, and none of them have lived as long as my mother has.  

Her cancer started with stage 3 inflamatory ductile breast cancer. It matastasized to her brain 3 months after they removed her breast. She had 15 treatements of whole brain, then she had a gamma knife procedure, which did kill the tumor. However, in the process, they "zapped" her healthy brain tissue as well! She has been tumor free for over a year, but she will die from the dementia

 I'd like to know if anyone else has experienced this and can give us any help!

Thanks

RE: Dementia from Whole Brain Radiation?

by thall013 on Tue Nov 24, 2009 12:49 AM

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On Feb 25, 2009 12:00 AM BaptistPastor wrote:

 

On 7/7/2008 willxyz wrote:

My wife was given whole brain radiation,  which didn't stop the mets from growing, later  got targeted radiation, which has done better.

Online I read (in the Merck Manual)  that severe dementia (like Alzheimers) is a typical side effect, (50% at 1 year, 70% at 2 years) 

However, our radiation oncologist says dementia  is  uncomon and not to worry about it.  Has anyone had any experience with side effects from whole brain radiation?

Also my wife is walking slower and slower and complains of weakness in her legs.  She prefers to hold my arm as we walk for stability.  Is this due to the whole brain radiation too?  


 

Hi,

My mother had whole brain radiation in May 07. She has experienced severe dementia from it. The doctor who was leading her brain cancer team has written her off saying there is nothing he can do. Her symptoms were slight at first, then beginning in May of 08, she went down hill quickly. She seemed to "bounce back" around Thanksgiving and was actually very good mentally through the holidays, although her mobility has not returned. This month (Feb.09) she seems to be slipping again. One of her physical therapists told me she has perseveration, which is a problem with brain connections that causes them to repeat the last thing they hear over and over. She is very agitated, doesn;t understand what is happening to her. I know they say this doesn't happen to everyone, but we know of three other cases at the hospital where she received her treatment, and none of them have lived as long as my mother has.  

Her cancer started with stage 3 inflamatory ductile breast cancer. It matastasized to her brain 3 months after they removed her breast. She had 15 treatements of whole brain, then she had a gamma knife procedure, which did kill the tumor. However, in the process, they "zapped" her healthy brain tissue as well! She has been tumor free for over a year, but she will die from the dementia

 I'd like to know if anyone else has experienced this and can give us any help!

Thanks

Hi, my mom was diagnosed with stage 4 CNS lymphoma (Brain Cancer) almost 5 years ago.   We were told if we did nothing she has weeks to live, she was 54 yrs old.  We decided to do all of the chemo and radiation they advised and almost 5 yrs later my mom is still alive.  The downside is she can not hold a conversation, walk, or do anything by herself.  They said she would be fine if she made it through the treatment, they NEVER told us this would be her life, we love her more today than we ever did but she has no idea what is happening to her.  We would ask the drs all the time over the last 4 yrs why is this happening, what does it mean and all the drs seemed to care about was the fact that she does not have the cancer anymore.  Finally after 4 1/2 years we were told these are all long term side effects of the chemo and whole brain radiation. When we asked what would happen next the drs said we dont know,  60% of patients with this kind of brain cancer never make it through the treatment never mind 4 1/2 years out.  The only thing they could refer it to was dementia.  It is awful to watch someone you love and who fought so hard just disappear in front of you slowly day by day.  My mom could walk with assistance in march of 09 and today lives in a wheelchair unable to stand up or walk.  She is very confused all the time.  We are losing her slowly.

Its nice to know we are not alone.

Thanks

RE: Dementia from Whole Brain Radiation?

by concerned109 on Thu Dec 10, 2009 04:05 AM

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My wife is 46 years old.  She is now suffering from sever dementia from Whole Brain Radiation.   We took her to Mass General thinking she would get the best care.  We were wrong.  This is just plain torture.  If anyone is considering whole brain radiation....forget it.  Do anything but Whole Brain if you love the person.  There's no way back once you take the step.  

RE: Dementia from Whole Brain Radiation?

by kitycat on Fri Sep 24, 2010 10:00 AM

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I would like to know where the info. you have here is referenced from.  My mother had whole brain radiation (low dose) to a MALT lymphoma behind her left eye, slight evidence it was possibly starting behind the right and gray areas of the dura  on the right side.  She had symptoms during the radiation that her rad. onc. said were probably not from the radiation but the lymphoma itself so she was never given steriods.  She experienced what he called a "rare" side effect during each of her radiation sessions that she could see the radiation light as it went over her and at  those brief times she smelled something burning.

Now 2 years out from radiation the symptoms she has complained about all through treatment have progressivley gotten worse.  Before treatment she complained of right sided head pain that they initially attributed to the dura involvement, pain is still there so now they say maybe it wasn't from the lymphoma.  Her memory gets worse everyday, mood swings and personality changes (more irritable and speaks her mind regardless of how it sounds).  She has fatigue that has totally disrupted her quality of life, prior to treatment she walked 3 miles everyday rain  or shine.  She has trouble with 30 ft. now, she has fallen atleast 6 times in 6 months, more weakness on the left side, she doesn't feel like its a balance issue but she just topples over is hse goes a little too far either way, she does'nt even realize she is leaning.  She will even be walking down a hall and will eventually end up walking into the wall.  Legs get very fatigued.  Radiation onc/ says "low dose of radiation could not be the cause of her symptoms", neurologist says she show sig. changes in white matter and in the upper cervical spine that does indicate sig. radiation damage.  Why such desparity in the two and why would there be sig. if she had low dose radiation?

 

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