Glioblastoma of temporal lobe

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Glioblastoma of temporal lobe

by Arlena on Mon Oct 22, 2012 06:23 AM

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In March 2012 my husband was diagnosed with Glioblastoma IV.  Three days later the tumor was 65% removed by surgery. A couple months later he began radiation and Chemo.  After that 6 week round of treatments, he now has 5 days a month of Temodar 285mg.  His memory is poor, he often doesn't recognize family, he has to have a walker to get to the bathroom (but is mainly incontenent) is up several times a night, and doesn't sleep during the day. MRI shows the tumor to be gone (with one questionable spot) but quality of life is poor to say the least.  Has anyone else experienced this?  The Dr.s have said there is no cure, he could live up to 2 years in this condition.  They said I can continue treatment, or stop at any time.....don't know what to do.  He isn't happy, but they can't answer a question on what exactly would happen if we stop the Chemo.

RE: Glioblastoma of temporal lobe

by siblingof on Mon Oct 22, 2012 03:18 PM

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Hi Arlena. My sister also has GBM. Is your husband no longer capable of making a decision about whether to continue treatment? If not, i guess the only advice I have is to try to make the decision you think he would have made had he still been capable of making it.

RE: Glioblastoma of temporal lobe

by Lorre_G on Mon Oct 22, 2012 04:08 PM

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A few years ago the American Brain Tumro Assoc. published this information about steroids.  I hope you find it helpful.

Steroids

From Messageline a publication of the ABTA

Introduction

Steroids are naturally occurring hormones.

In brain tumor treatment, steroids are used

to reduce the swelling, or edema, sometimes

caused by the tumor or its treatment. The

steroids given to brain tumor patients are

"corticosteroids" – hormones produced by

small glands, called adrenal glands, near the

kidneys. They are not the same as the "anabolic

steroids" used by athletes to build muscle.

Dexamethasone (Decadron) and prednisone

are corticosteroid drugs. These steroids can

temporarily relieve brain tumor symptoms,

improve neurological symptoms, promote

a feeling of well-being, and increase your

appetite. Because steroids are hormones,

their long-term use requires close monitoring.

In this publication we’ll share why steroids are

given, how to manage the effects of steroids,

and a few guidelines for their safe use.

About Edema

Edema is the accumulation of fluids in the

tissue around a tumor – it is a common

occurrence in people who have a brain tumor. Edema happens when the blood brain barrier, an invisible protection around the brain, is disrupted by the tumor. Small blood vessels around the tumor can then leak fluids which collect in the surrounding tissue. Edema can also occur following surgery, radiation, or other treatment for a brain tumor.

Edema can lead to increased pressure within

the brain which, in turn, can cause headaches

and drowsiness. Sometimes the edema

actually causes more symptoms than the

tumor itself. Steroids are medications used

to reduce edema.

When Are Steroids Given?

Steroids may be prescribed before, during, or

after surgery. They may be started at the time

of diagnosis if edema is seen on MRI scan,

or if swelling is causing pressure on the brain.

Steroids may be used to control edema caused

by surgery. In this situation, they may be

started just prior to surgery or during the

procedure. If swelling occurs following

surgery, as it sometimes does, steroids can

be given at that time. If you were on steroids

prior to surgery, your dose might be adjusted

after surgery if increased swelling causes an

increase in your symptoms.

Steroids are also used to treat edema caused

by radiation therapy. Steroids may be started

prior to radiation, or at the time of treatment.

The steroids are continued until the brain

appears to have healed from the acute effects

of the therapy.

For people with a recurrent tumor, or those

with a metastatic brain tumor (which spread

to the brain from a cancer elsewhere in the

body), steroids can help improve quality of

life by reducing symptoms. When used in

this way, steroids may increase a person’s

alertness, ability to be mobile, or perhaps

increase their ability to communicate and

interact with others.

Do Steroids Treat Tumor Cells?

Steroids are not intended to be a "cytotoxic"

or cell-killing therapy. Their purpose is to

reduce swelling, not cure the tumor. However,

some researchers do believe steroids have

some toxic effect on tumor cells. If true, this

effect is probably not great enough to kill

significant numbers of tumor cells or to make

steroids an effective "stand-alone" therapy.

One particular tumor that is very sensitive

to steroids is primary central nervous system

lymphoma (PCNSL). If this type of tumor is

suspected, steroids should not be used until

after the diagnosis is made. There are other

diseases that respond to steroids, and a

pathology reading may be more difficult if

the lymphoma was pre-treated with steroids.

PCNSL can markedly decrease in size on

scans taken immediately following the use of

these drugs. Rather than controlling edema,

steroids destroy lymphoma tumor cells, but

they are not a long-term cure for this tumor.

How Are Steroids Taken?

Although steroids can be started through an

intravenous (IV) line or by injection into a

muscle (IM), most people with a brain tumor

take their steroids by mouth – also called

"orally." The pills come in doses that range

from 0.25 mg to 6 mg tablets, taken between

two and four times a day. Your doctor will

determine the starting dose of steroid based

on your MRI scan and your symptoms. It

will take 24-48 hours before you begin to see

the effects of the medication, but the change

is often remarkable. The dose may need to

be adjusted – either increased or decreased

slightly – depending on how your body

reacts to them.

To protect your stomach, take your steroids

with food or milk. Your doctor may also

prescribe an antacid to be taken daily.

If your doctor prescribes the long-term use

of steroids, don’t be disappointed if your

steroid dose needs to be increased over time.

The goal, of course, will be to find the lowest,

most effective dose of medication that keeps

your neurological symptoms at a minimum.

With time, however, that "most effective

dose" may need to be adjusted. The need

to increase your medication does not

automatically mean your tumor is growing,

and it does not mean you’ve made errors in

taking your medication.

You and your family can be of great help in

this process by keeping your doctor aware of

the way your body reacts to the steroids. If at

any point the side effects become difficult

to manage, please share your concerns with

your nurse or doctor.

When your doctor feels you no longer require

steroids, you will be given instructions for

slowly stopping the drug.

Do not abruptly stop taking your steroids.

The "tapering" process slowly decreases your steroid dose. Your body needs this period of time to again begin producing its own steroids, and to avoid an emergency medical crisis. Lowering steroid levels too quickly can also cause a "rebound" increase in swelling.

Side Effects

Steroids can have several positive side effects.

They can markedly decrease symptoms, give

one an overall sense of well-being, temporarily

increase thought and functioning abilities,

and increase your appetite.

Steroids can also cause a wide range of

effects that must be carefully monitored by

your doctor. The most common side-effects

are: weight gain; thinning of the skin;

gastrointestinal upset; muscle weakness in

your thighs, shoulders, and neck; susceptibility

to infections; "masking" or hiding a fever;

mood swings; insomnia; pneumonia; and

increased blood sugar levels (especially if

you have diabetes.) Steroids can interact with

some seizure medications, either increasing

or lowering their levels in your blood, which

can alter their effectiveness. Other, more

serious side-effects can occur, although

they are less common.

The benefits of steroid use almost always

outweigh their potential side effects. If you

have any questions about balancing risks

and benefits, please talk with your doctor.

Managing Common Side Effects

WEIGHT GAIN and INCREASED BLOOD

SUGAR LEVELS

After a few months of steroid use, you may

begin to notice a significant weight gain. This

is not the "fatty" weight of overeating – it is

your body processing and storing food in a

different way. You may notice your face looks

puffy or moon-like, and you’ve developed a

small hump on your back, just below the

neck, called a "buffalo hump." You may

notice stretch marks across your abdomen as

it increases in size, while your upper arms and

legs seem to become thinner. These changes

are due to your body storing more fat on

the trunk of your body and less in your

extremities. While this is an unavoidable effect

of steroids, there are several things you can

do to help manage this change in your body.

Firstly, steroid weight gain gradually

increases. If you gain more than 5 pounds in

one week, please call your doctor. A sudden,

large weight increase can signal medical

problems that should be reported to your

healthcare team.

Secondly, ask your doctor for a referral to a

licensed registered dietician experienced in

treating people on steroids. This may be a

dietician who regularly works with cancer

patients, or a dietician experienced in

treating people with pituitary disorders.

Either can be of help in outlining a healthy

eating plan that will provide the nutrients

important to your healing, yet limit those

which your body has difficulty with right

now. Since nutritional needs vary from

person to person, a professional is your

best resource for this help.

Thirdly, it’s important that your body

maintain its ability to flush waste out of your

system. Keep your kidneys and bowels in

good shape – don’t stop drinking water. It’s a

natural reaction to try to avoid adding liquids

to your body right now, but that will only

compound the problem.

GASTROINTESTINAL PROBLEMS

Steroids can cause an upset stomach. Be sure

to take your medication with food, milk, or an

antacid that your doctor prescribes for you.

Call your doctor if you have stomach pains,

run a temperature, are constipated, or notice

any blood in your bowel movement. Avoid

the use of non-steroidal anti-inflammatory

drugs (NSAIDs such as Advil, Motrin, Aleve)

and aspirin unless directed by your doctor.

Steroids may affect your blood sugar

level, especially if you are diabetic. If

your sugar levels increase, you may be

referred to both an endocrinologist and a

dietician. In some cases medication may

need to be started or your existing

medication may need to be adjusted.

While you are on steroids, it is especially

important that you have regular bowel

movements. If you become constipated, or

experience diarrhea, call your healthcare team.

INSOMNIA

Sleep disturbances are a possible side effect

of changing hormone levels. If you have

difficulty sleeping, ask your doctor if your

dosage can be adjusted so you take more

medication in the morning and less after

dinner. (Don’t make this change on your

own.) Healthful sleeping habits, such as

avoiding bright light, caffeine and sugar as

bedtime approaches, and a regular nighttime

routine may be of help.

DEPRESSION/MOOD CHANGES

While taking steroids, you might experience

depression, mood swings, irritability, or

agitation. These symptoms are due to the

steroid’s effect on the natural hormone

balance in your body, and can be treated.

Let your doctor know how you are feeling.

Medications may relieve some of these

symptoms and can be particularly helpful if

you remain on steroids for a long period of

time. It is also helpful to discuss these effects

with your family so they know what to expect

and can be supportive.

MUSCLE WEAKNESS

Steroids sometimes cause weakness in the

muscles of the legs, arms, neck and chest.

Leg weakness may be most noticeable when

you get up from a sitting position and try to

use the large muscles in your thighs. If leg

weakness is a problem, ask for assistance

when using the bathroom or getting up

from a chair.Walk with another person who

can get help should you stumble, or try an

assistive device – such as a cane or walker.

If the chest muscles are affected, you may

experience difficulty breathing or pain when

taking deep breaths – especially if you have a

history of asthma, emphysema, or smoking.

Please be sure your doctor is aware of your

past medical history. Ask your doctor about

exercises that may help strengthen your

muscles, or for a referral for physical therapy.

INFECTIONS

Steroids have a tricky way of "masking," or

hiding, the beginning of an infection in your

body. Be alert to anything that just doesn’t

seem right. An increase in temperature may

be the first – or only – sign something is

amiss. Because of that, some people on

steroids take their temperature at the same

time every day, regardless of how they feel.

This is an easy way to keep a baseline check

on your good health. Additionally, look at

your tongue each time you brush your teeth

– people on steroids are especially prone to

yeast infections, or "thrush," in their mouth.

If you notice a thick white coating on your

tongue, make your nurse or doctor aware.

Some people are prone to developing a

certain type of pneumonia after they have

been on steroids for awhile. Your doctor may

start you on an antibiotic to prevent this from

happening. Bactrim is a drug commonly used

for this purpose, but please let your doctor

know if you are allergic to sulfa-based drugs.

Call Your Doctor If....

• You are running a temperature – even if

you feel well otherwise.

• You see any blood in your bowel movements.

• You have stomach pain.

• You gain more than 5 pounds in one week.

• You develop a rash.

• You are drinking and urinating a lot.

• You are falling.

• Chest pains or difficulty breathing may

signal a medical emergency. Call for

emergency help.

While you are on steroids, follow the health

precautions used by people at higher risk

for infection. Wash all fresh fruits and

vegetables carefully. Wear gloves when

using a kitchen knife. Cook meat and

poultry until well done. Use gardening

gloves when working outside. Avoid crowds

and, in general, avoid sick people.

The Next Steps

We hope that the information in this

publication helps you understand how these

drugs work, and provides the knowledge

you need to be more comfortable caring for

yourself or your family member while they

are on steroids. As we stated, the goal of

steroid treatment will be to use the minimal

amount of medication necessary, and to wean

you from the medication as soon as practical.

Regardless of where you are in your treatment,

your task is becoming well again. Make

appointments for your follow-up doctor visits

or scans and mark them on your calendar.

Find a support group if you’d like to meet

others with brain tumors. See friends.

Learn about your tumor.

RE: Glioblastoma of temporal lobe

by Spouseof on Mon Oct 22, 2012 09:20 PM

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Thank you Lorre; very helpful indeed!

RE: Glioblastoma of temporal lobe

by SarahGrey on Thu Jan 03, 2013 01:30 AM

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Hi Arlena,

My husband was also diagnosed with GBM a few months ago - his tumor is also in the same area but all of the doctors advised against surgery.  He's had radiation, chemo (Temodar) and Avastin.  It seems to be shrinking the tumor.  

His symptoms include: muscle weakness, some short-term memory loss, he has had seizures where he could not recognize me (thankfully it just happened twice), he has extreme fatigue (all he wants to do most of the day is sleep) and he has increased hunger.  He had incontinence issues months ago but thankfully that too has mostly stopped.  

As for how lon.g we have...  I dont know.  The doctor originally said 1-2 years.  But really, who knows...

Before you guys decide to stop treatment, maybe give it a few more months.  Chances are he may improve.  He wont be the same as he used to be, but he could improve substantially.  Thankfully, my husband has.  If you stop treatment, you'll never know and I fear you may regret it.  :(   And who knows...  miracles sometimes happen.  That's what Im hoping for anyway.

I hope this helps - good luck to us all...  This cancer is a really nasty thing...

RE: Glioblastoma of temporal lobe

by kat54 on Fri Jan 04, 2013 01:25 AM

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Arlena I was diadnosed in Jan. 1993.  Twenty years ago with GBMIV in right temporal lobe.  The first few years were very hard for my family.  they never knew fro day to day what i would be  me or a toddler child that needed help with everything.  after my second surgery in 995 I was totally blind for several months. try to remember your husband's brain has been sliced & diced, fried and marinated.  that is alot of trauma in a short time plus the after effects of anesthesia.  steroids are a miracle drug and a curse.  I know it is harder on the caregiver than the patient.  when I was first diagnosed there wasn't a chemo that would cross the brain blood barrier so I opted to hold off  and so far by the grace of God granting me a miracle I have not needed it.

RE: Glioblastoma of temporal lobe

by alexyj23 on Mon Jan 28, 2013 09:38 PM

Quote | Reply

Sarah Grey,

My dad who just turned 55 this month was diagnosed with GBM IV in April 2012.  His is in his temporal lobe and the doctors too said because of the location they would rather not remove it because the quality of life would deminish.  He is on a trial drug where he does not know if he is getting the placebo or not.  So far it did shrink a little once and then since then has not grown.  Lately, his seizures have become more frequent and a little painful.  Did your husband experience any pain?  I'm hopeful my dad will be around for a while despite what doctors say.  So far, he already bypassed their original guess.  I am 27 and have a son on the way and I pray constantly that he will be around to teach him things that my husband nor I can.  I hope to hear from you and I hope your husband is doing great!

RE: Glioblastoma of temporal lobe

by SarahGrey on Tue Jan 29, 2013 12:29 AM

Quote | Reply

On Jan 28, 2013 9:38 PM alexyj23 wrote:

Sarah Grey,

My dad who just turned 55 this month was diagnosed with GBM IV in April 2012.  His is in his temporal lobe and the doctors too said because of the location they would rather not remove it because the quality of life would deminish.  He is on a trial drug where he does not know if he is getting the placebo or not.  So far it did shrink a little once and then since then has not grown.  Lately, his seizures have become more frequent and a little painful.  Did your husband experience any pain?  I'm hopeful my dad will be around for a while despite what doctors say.  So far, he already bypassed their original guess.  I am 27 and have a son on the way and I pray constantly that he will be around to teach him things that my husband nor I can.  I hope to hear from you and I hope your husband is doing great!

oh those trials are always rough - never knowing if you're getting the real thing or not.  ironically, the placebo effect seems to really work and therefore even people on placebo benefit.  i wish you father the best!

actually no, thankfully my husband doesnt have any pain with his seizures and his seizures are pretty mild and rare.  he'll have them if he lays down awhile and then gets up quick and starts walking.  but it's more of a loss of strength and not any pain.

may i ask how large your dad's tumor is?  inoperable stinks...  my husband's was 2 cm and then it shrunk in half last month because of avastin.  he actually has more than one tumor (the bulk was originally 2 cm) and the doc said some tumor areas disappeared with the avastin.  my husband does seem to be getting weaker so we're going for a checkup tomorrow... hopefully he just needs more steroids and it's an easy fix...

keep in touch and let me know how it goes! sarah

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