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Old 11-27-2005, 05:20 PM   #1
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Glioblastoma

My friend whos 56 has glioblastoma. She had the tumor removed and was feeling quite positive. Then they told her it was cancer--stage 4 Glioblastoma.

She starts chemo and radiation tomorrow and Ive been taking food over to her and saying lots of prayers and asking everyone I know to do so as well.

Anyone have any experience w/this type of cancer?

 
Old 11-28-2005, 08:25 PM   #2
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Re: Glioblastoma

Yes, unfortunately, I know of this dreadful cancer. My dad passed away with it in 2000. In my father's case it was fast acting....he was diagnosed the end of January 2000 and passed away the end of February 2000. He had 3 tumors - 2 of which were unoperable.

I don't know about your friends situation but radiation and chemo were offered to my dad and he refused treatment after 1 radiation treatment. His cancer was really advanced when found. We had thought at first he had had a stroke but upon getting him to the hospital we found out differently. They told us in the ER he had less than 30 days to live.

The thing about this type of cancer is...it's very fast acting and it depends on the location as to what happens. Some people respond well to radiation and chemo - others don't.

There was another thread on this very subject that I participated in not long ago - do a search for it...loads of good info in that thread.

I will keep you and your friend in my prayers. Take Care....Scarlett

 
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Old 11-29-2005, 06:16 AM   #3
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Re: Glioblastoma

MaryG--
Sadly, I also am having experience with this cancer. My father, who turned 66 in October, was diagnosed at the end of June this year. He had one tumor, but it was toward the midbrain, on the left thalamus. He had surgery to remove the bulk of the tumor and he had 4 weeks of radiation. No chemo. He never recovered much movement on his right side, though he did retain most of his ability to speak. His short term memory was affected a lot.

He was doing fairly well in physical, speech and occupational therapy, but in the last 3 weeks he has taken a rapid and terrible change for the worse. He still interacts by shaking his head, but he is barely awake and has started to accumulate fluid in his lungs. It is 5 months from his diagnosis, almost to the day (a little more than 4 months since his surgery).

Unfortunately, glioblastoma multiforme is virtually incurable. I liken it to spilling a glass of water on the floor -- the majority of the spill is in the center where you can wipe up most of it (the tumor mass), but around the periphery of the spill, there are little drops of water that may have gone far away from the center of the spill and you'll miss those when you wipe up the center of the spill. Those are the cancer cells that will be left behind after the surgery. Doctors cannot remove all of these cells because they are mixed in with brain tissue. The purpose of radiation and chemo is to try and kill these surrounding cancer cells.

GBM is very fast and very aggressive. If your friend had an almost total resection, and she was in pretty good shape before the surgery, she will probably fare okay for a while. And many people live for many months after surgery and radiation/chemo, however, you should keep in mind that the average lifespan is about 1 year from the time of diagnosis. I don't want to scare you with that number, because there are some people who beat the odds. Perhaps your friend will be one of them - I wish her the best of luck and will have good thoughts for her.

Your support of her and her family is crucial at this time. Many hugs and thanks to you for going out of your way to help. Sadly, my father's family wasn't very supportive and my sisters and my mom and I pretty much had to weather this thing amongst ourselves (and our spouses). A good support system is invaluable to your friend - it helps her and her family conserve energy that they will need to fight this thing.

Good luck - post back again anytime -

MLWC

 
Old 11-29-2005, 07:52 AM   #4
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Re: Glioblastoma

She started chemo/radiation Monday and said she'll have it every "week day" for six weeks---that seems like a lot but I suppose it is needed for something so aggressive.

I saw her a few days ago and was not happy with what I saw....she seemed to be not doing well on her feet. Her face was also puffy which may be from medication. She has other physical problems as well.

She's a special person and I feel for her. I keep telling her she has to hurry and get well otherwise she'll be so fat (from my cooking) that she won't be able to fit out of the door.

I also send her cards every couple days in the mail so she has something to cheer her from time to time.

Everything I'm doing is frightfully little I'm afraid. I wish I could do something else for her.

I've told her I won't bother her for the 1st week of chemo and when she's ready to talk to call me---I know this has been affecting her personality a bit and giving her mood swings.

Any help is appreciated and I appreciate knowing what we are "up against" even thought it isn't the best news.

Prayers to all who are affected with this disease.

Mary

 
Old 11-29-2005, 09:16 AM   #5
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Re: Glioblastoma

Mary--
Yes, the six week radiation course is considered an 'aggressive' treatment option. "Palliative" is about 2 weeks. My mom decided that something in between would be better, so they arranged for 4 weeks for my dad.

He did have some physical changes...some facial bloating, probably from the steroid (Decadron). He had a lot of balance problems before the surgery as the tumor progressed. Actually, the fact that your friend was on her feet after the surgery is a good sign - she may respond well to the radiation/chemo. Generally, (based on research articles and literature I've read) the better shape you're in before and after surgery, the better your length and quality of life after treatments. I hope that is the case for your friend.

It's a great idea to send the cards and visit and make jokes. Are any of her abilities impaired due to the tumor or the surgery? I only ask because my dad lost part of his sight, so we had to make adjustments as to where we stood and what he could see. Also, his short term memory was affected a lot, so he could not remember who had been there from day to day, though we knew who we all were, sometimes he couldn't remember our names. What we tried to do was just tell him statements to answer his questions, even if we had repeated them over and over...instead of saying 'do you remember....?'. It helped him feel less frustrated and eventually his memory improved a little.

Also important is making sure you involve your friend in her own daily life as much as possible. Seems funny, I know, but a big issue when a person is in the hospital is that they lack the power to make some decisions for themselves. Realize that any decision is important - what socks they want to wear, or like in my dad's case when he lost his hair during radiation, what hat he wanted to wear that day. Radiation will draw a lot of energy from your friend as she goes through it. Any help you can give will be appreciated for sure....if she's able to eat regular food, maybe bring her things she likes to eat and drink. If she loses her hair, maybe you can pick up something to keep her warm - volunteers in hospitals make hats for cancer patients. One of those hats used to be my dad's favorite.

These things seem so small at the time, but they help to make the person feel 'normal' and relaxed when they need it most. Also, don't forget about taking care of yourself! You care a lot about your friend, and that is very important, but remember that unless you are well, you can't help others GET well...so take time out to recoup and treat yourself to something extra nice on occasion.

Thanks for sharing your experience...
MLWC

 
Old 11-29-2005, 10:48 AM   #6
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Re: Glioblastoma

She's told me that her vision is impaired Prior to the surgery, it was bad, she was losing balance, having numbness etc----after surgery she told me it was a "miracle" as it all had returned to normal.

It has been "approx" 4 weeks and it seems that everything is starting to revert back---she's losing her site, her balance etc.

She has had some episodes of anger with people---so I try to respect her wishes as much as possible---if she says "no hugs"---then it is "no hugs!!!"

I just feel so bad for her, she's a wonderful person.............I will continue to send cards, make food and listen when she calls----I would do more if she'd allow it---but i think she feels more in control doing things herself as much as she can.

Thanks to everyone for your support.

Mary

 
Old 11-29-2005, 05:01 PM   #7
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Re: Glioblastoma

My mother died of gliobastoma three months from the date of her brain surgery.

The neurosurgeon couldn't get all the cancer. And her speech function was destroyed by the surgery. She was alert after the surgery, but never uttered another word.

This is a bad disease. Her sisters and I agreed not to put my mother through radiation or chemo. Frankly, we saw no point in making her more miserable.

Would that I had more pleasant news, but it is a terrible thing to see your mom go downhill so terribly fast.

 
Old 11-29-2005, 05:38 PM   #8
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Re: Glioblastoma

I am so sorry to hear about everyones bad experiences. I am going to do whatever I can for her, even if only to be on the other side of the phone when she calls.

I am especially going to pray for her- --she is a very special person and she is a wonderful friend.

Thanks again to everyone.

Mary

 
Old 06-02-2007, 09:08 PM   #9
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Re: Glioblastoma

I posted this in 2005, here it is June 2007 and she is still with us, but very very ill. She cannot get out of bed herself and has lost some of her memory and ability to make sentnces. Her hearing is not great, nor her vision. She is sad, depressed but still fighting.

I sat with her today and she just wasn't the same "BEAUTIFUL" person I always knew her as.

It is a horrible diseaase.........

 
Old 06-05-2007, 03:51 PM   #10
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Re: astrocytoma glioblastoma multiform

My husband of 28 years was diagnosised 2 weeks ago with astrocytoma glioblastoma multiform grade IV. He is only 61 but looks like he is 50. The only symptom he had was sudden confussion ans his speech was coming out as word salad. We thought he had had a stroke but within 2 days we knew he had something wrong inside his brain. His speech is back to normal was slight memory loss - mostly names. He has been very active and even after this diagnosis and surgery he has not slowed down. Yesterday he was fitted for a mask for radiation and we meet with the radiation oncologist on thursday as well as the oncologist. What is ahead for us? What advice can you give us?

 
Old 06-21-2007, 02:22 AM   #11
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Re: Glioblastoma

Hi Becky

So sorry to hear about your husband.

GBM took my mom away in 2003, it was a 10-mth battle. My mom's tumour was huge, cutting across both hemispheres, and the neurosurgeon could hardly take any part of the tumour out as it would compromise my mom's quality of life - speech, movement, etc.

What followed was 6 weeks of radiation and on steroids (dexamethasone) then on chemo (Temodar) which worked wonders for about 3 rounds. There are side effects from each of the treatments so make sure you are aware of them.

I am grateful that my mom's doctors were 'realistic' with the treatments as they were consistently mindful of maintaining my mother's quality of life.

Take care. Know that you are not alone in this journey.

Hi MaryG

Yes, it is a tough battle and one that we'll lose as it is incurable. My heart goes out to you and your friend.

 
Old 06-25-2007, 01:58 AM   #12
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Re: Glioblastoma

My friend is now in Hospice for almost 2 weeks, cannot do anything for herself anymore.....it is so sad.

 
Old 06-25-2007, 06:44 PM   #13
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Re: Glioblastoma

I'm sorry to hear about your friend and to read about all of the other people on here with GBM experiences. My 55 year old father died 4 months ago after a short battle with GBM Stage IV brain cancer. He had two craniotomies in one day. He took chemo and radiation for a little over a month. In the end, he got really depressed and took his own life. It's such a terrible disease, and we only found out he had it when he thought he was having a stroke and was taken to the ER. A few days later, we got the diagnosis of the tumors, then a few days later the two operations confirmed our worst nightmare. I'm still struggling with the loss and came here for support and encouragement. I'm sorry for all of you who know about this cancer personally!

Last edited by Ferg73; 06-25-2007 at 06:47 PM.

 
Old 06-27-2007, 04:39 PM   #14
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Re: Glioblastoma

Ferg

I am so sorry for your loss.

My friend lost her battle on Monday---she was truly one of the nicest people around.

I wish they'd figure out the cause of these things so they can work on a cure. Her life ended way too soon.

Mary

 
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