GBM - Do not give up hope

angelica · New User Joined: 05 Aug 2005 Posts: 3

Hello everyone!

I would love to give you all a little hope. My mother was diagnosed with GBM in September last year. By the time the doctors said she would live for about 6 months thanks to the treatment she would be receiving (temodal + radiotherapy).

We passed through very hard times, when the radiotherapy caused swelling in her brain and she had to stay in hospital without being able to do the treatment she needed. If the sweeling didn't get better fast enough she would die because of the tumour which was growing fast. She lost all the movements in the right side of her body as well.

Me and the rest of my family never gave up. And I remember how sad I was reading info people gave about their family experiences with GBM (on the net), which were always very bad. I promiced myself once my mother got better i would let everybody know... And that's what I'm doing.

Treatment was very hard. She couldn't walk, couldn't take care of herself, couldn't eat alone, go to the toilet or shower alone. She couldn't move her right arm or right leg... After the treatment it took a while but she was recovering. Now after 10 months from when she was diagnosed (remember doctors said she would die 6 months later) she is walking, she is talking normally, and today she travelled to visit some relatives. She is able to write and even draw again (she is a painter).

I am very happy and I'm sure my mother will be fine. It doesn't matter what the doctors say. They are not God, and medicine is full of unexplained stories. Please, believe in miracles, because they do exist if you give them a chance.

Anonymous · Guest

What a wonderful optimistic message to everyone. There is so much despair and sad stories, it is SO needed to hear a success story.
Thank you so much for sharing and ENJOY every day

french · New User Joined: 08 Aug 2005 Posts: 1

Hello,
my dad has been surgered for a GBM, late 2002. Doctors was saying that he could loss memory or mobility... He has encountered short-term memory difficulties for 1-2 months only. In 2003, he received Radio Therapy and Temodal (total amount of 60 gray). He received no traitement at all in 2004, had a really good quality of life (had every day walk 1 hour or bike, lot of kilometers ; was speaking as easily as earlier years).
December 2004, a 8mm GBM tumor was noticed on RMI. January 2005, it has growth to 15mm and then controled by a radiosurgery (stereotaxic' 20grey).
April : It seems controled on RMI. Now, a recent RMI show a new activity of the GBM. We are now waiting for the doctors decision (new radiosurgery ? new conventional surgery ?)

By this, I want to tell that it is possible to overcome bad diag. (6-9 months) and expect a good quality of life for years. We still keep hope.
tell me if you or one of your nears have 'experienced' similar events.

(I apologize for my bad english)

Anonymous · Guest

your English is perfect..heard loud and clear the message you sent...thank you for sharing !~

angelica · New User Joined: 05 Aug 2005 Posts: 3

I'm glad to hear about your dad. I hope he will be fine whatever treatment he does.

My mother was not able to do surgery, and even so she's doing fine. She lost mobility and short-time memory, but she's a lot better now. Before she was not able to keep a conversation without getting lost and forgetting what she was going to say.

Your english is fine Wink

Mine is not perfect either, I'm brazilian.

rhonda · New User Joined: 20 Oct 2005 Posts: 1

hi , my mum was diagnosed with gbm in july after collapsing. Her and my father moved to spain last year to enjoy their retirement , so when we got the call from my father me and 2 of my 3 sisters flew straight out to them. after arriving at the hospital , the dr came to see us and we were then told they couldn't do anything for her but she was on a cortazone drip to reduce the swelling and it was just a matter of time . The language barrier was a big problem but we had a translator with us in times when we needed help. We were taken in to see mum and what a shock , she looked a lot older than her 64 years , to be honest i thought if she saw the day out it would be a miracle , but miracles happen and within 24 hours she was sitting in a chair and with help was getting to the toilet and feeding herself . Between us we done shifts so she was never alone and we done all her caring. 4 days later she had another scan and we were told we could take her home for the weekend but had to be back monday morning to get the results. Over the weekend the family discussed it and decided to ask the dr's if we could bring her home to england and decided it better not to tell mum about the tumour. When the dr came to us on the monday , he told us he thought it was operable and she had a good chance of recovery , but until they operated didn't know for sure and this would be a decision mum would have to make whether to have op or not . Being told this gave us hope and changed the plans as dad had to tell mum she had a tumour and she had to decide , there was no hesitation in her , she said she'd fight it all the way and have whatever treatment they could offer. So 17 days after collapsing and a day before her 65 birthday , mum had the operation . Then came the next blow , that it was gbm and all they could get was a piece for a biopsy. She recovered from the op very quick and we were told we could take her home and wait for an appointment for radiotherapy to start. After 6 weeks we still hadn't heard anything and she started getting headaches again and started being sick , dad got her to the hospital and they gave her a 4 day course of steroids , and the dr said she'd chase radiotherapist up. 8 weeks after her op she had another scan and started radiotherapy , dad was given tablets called temodal (but didn't know what they were for , until i looked up on net in england and found they were chemo ) . Almeria hospital is about and hour away from where they live and they were told she would have 5 days a week radiotherapy and temodal for 30 days (sat and sun off ) . Mum was being very sick constantly so they gave her some tablets to help , but it didn't stop it and she grew weaker and weaker , it was hard to tell if it was radiotherapy , the chemo, the travelling or just that she wasn't eating . Getting liquid into her was hard and she was getting very dehydrated but we kept plugging on and giving her encouragement. Last week (exactly half way through treatment ) we got the translator to come with us to see her radiotherapist . Mum had been talking of stopping treatment and we had some questions too (what quality of life she'd have after treatment finished , how long it could extend her life by etc ) . The radiotherapist was very good and asked how much we knew and asked if we realised how aggresive it was , in the 8 weeks she was waiting it had grown a lot , she didn't think the rt or chemo was making any differences and although it would be dad's decision but felt it might be better to stop treatment. It was very hard , and i was flying home the following day , but he decided to stop treatment. The day i left mum couldn't even lift her head of her pillow as she felt she would black out (which she had done the day before) . She is very weak , her memory is very minimal , she's not eating a lot , or drinking much . I spoke to dad when i got home and he said she'd blacked out again when he took her to toilet. Last night i found this forum and spent hours going through the letters , now i am scared the wrong decision has been made about her stopping treatment. I'm sure if they'd have been in england we would have been told a lot more and explained better ,and be told what to expect her condition to be while on treatment(sickness, weakness, etc), i'm not saying treatment would have been any different , but the language barrier has been the biggest problem . I know gbm is not curable yet , but everyday extra i can have with my mother would be a bonus. Any help would be appreciated.

grana · New User Joined: 09 Sep 2005 Posts: 3

[quote="rhonda"]hi , my mum was diagnosed with gbm in july after collapsing. Her and my father moved to spain last year to enjoy their retirement , so when we got the call from my father me and 2 of my 3 sisters flew straight out to them. after arriving at the hospital , the dr came to see us and we were then told they couldn't do anything for her but she was on a cortazone drip to reduce the swelling and it was just a matter of time . The language barrier was a big problem but we had a translator with us in times when we needed help. We were taken in to see mum and what a shock , she looked a lot older than her 64 years , to be honest i thought if she saw the day out it would be a miracle , but miracles happen and within 24 hours she was sitting in a chair and with help was getting to the toilet and feeding herself . Between us we done shifts so she was never alone and we done all her caring. 4 days later she had another scan and we were told we could take her home for the weekend but had to be back monday morning to get the results. Over the weekend the family discussed it and decided to ask the dr's if we could bring her home to england and decided it better not to tell mum about the tumour. When the dr came to us on the monday , he told us he thought it was operable and she had a good chance of recovery , but until they operated didn't know for sure and this would be a decision mum would have to make whether to have op or not . Being told this gave us hope and changed the plans as dad had to tell mum she had a tumour and she had to decide , there was no hesitation in her , she said she'd fight it all the way and have whatever treatment they could offer. So 17 days after collapsing and a day before her 65 birthday , mum had the operation . Then came the next blow , that it was gbm and all they could get was a piece for a biopsy. She recovered from the op very quick and we were told we could take her home and wait for an appointment for radiotherapy to start. After 6 weeks we still hadn't heard anything and she started getting headaches again and started being sick , dad got her to the hospital and they gave her a 4 day course of steroids , and the dr said she'd chase radiotherapist up. 8 weeks after her op she had another scan and started radiotherapy , dad was given tablets called temodal (but didn't know what they were for , until i looked up on net in england and found they were chemo ) . Almeria hospital is about and hour away from where they live and they were told she would have 5 days a week radiotherapy and temodal for 30 days (sat and sun off ) . Mum was being very sick constantly so they gave her some tablets to help , but it didn't stop it and she grew weaker and weaker , it was hard to tell if it was radiotherapy , the chemo, the travelling or just that she wasn't eating . Getting liquid into her was hard and she was getting very dehydrated but we kept plugging on and giving her encouragement. Last week (exactly half way through treatment ) we got the translator to come with us to see her radiotherapist . Mum had been talking of stopping treatment and we had some questions too (what quality of life she'd have after treatment finished , how long it could extend her life by etc ) . The radiotherapist was very good and asked how much we knew and asked if we realised how aggresive it was , in the 8 weeks she was waiting it had grown a lot , she didn't think the rt or chemo was making any differences and although it would be dad's decision but felt it might be better to stop treatment. It was very hard , and i was flying home the following day , but he decided to stop treatment. The day i left mum couldn't even lift her head of her pillow as she felt she would black out (which she had done the day before) . She is very weak , her memory is very minimal , she's not eating a lot , or drinking much . I spoke to dad when i got home and he said she'd blacked out again when he took her to toilet. Last night i found this forum and spent hours going through the letters , now i am scared the wrong decision has been made about her stopping treatment. I'm sure if they'd have been in england we would have been told a lot more and explained better ,and be told what to expect her condition to be while on treatment(sickness, weakness, etc), i'm not saying treatment would have been any different , but the language barrier has been the biggest problem . I know gbm is not curable yet , but everyday extra i can have with my mother would be a bonus. Any help would be appreciated.[/quote]

Hi Rhonda, I'm italian my father has got a GBM without surgery options. Well he made traditional radio and temodal, but now we're trying a new way with a composite called Tarceva (tarceva 26034) in Padova, Italy. I know that this new therapy is a sort of sperimental way, you can find information at www.eortc.be which is the structure where this project has been developed. I'm sure that yhere is something in the USA (Houston and Toronto Canada, I think). Tarceva is a new therapy, hoping that it would help to fight GBM. Good luck.

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 72

I want to thank you all for posting your stories. Your successes have gotten me through some hard times. My dad was a perfectly healthy 56 year old active man July 26, 2005. On July 27th we suspected he had had heat stroke because he couldn't formalize everything he wanted to say, the next day we found him unconscious and the next week he was diagnosed. His tumor is in the communication center and is 4" in diameter. We were told by everyone who has seen him that they were amazed he never showed symptoms earlier. It is inoperable. We did a round of temodor and radiation and he seemed to be doing ok. We were hopeful that when the treatment ended he would continue to gain strength and improve. It hasn't happened. The day after he finished treatment my brother found him unconscious again and 3 times that week they were in the emergency room with swelling. After that he had a week of severe digestive issues and lost 15 pounds over the next 2 weeks. He seemed to improve a little after that and was eating on his own and even walking/shuffling with assistance this week. When I called to check on him tonight mom said he started vomitting again last night and things were not looking good. Dad has not had any quality of life since the treatments ended and it was very diminished before then. I still have hope and am prayerful. Some of your stories are amazing. Thanks for listening. I think for me the hardest thing is keeping hopeful when I see him so much not like he was. I wish you all the most quality time you can have with your loved ones.
_________________
Michele

brainman · Posted: Mon Nov 07, 2005 1:56 am Post subject: Re: GBM - Do not give up hope

[quote="angelica"]

Your english is fine Wink

Mine is not perfect either, I'm brazilian.[/quote]

Vivi no Brasil ate 18 anos de idade... Tupa, Sao Paulo. (I lived in Brazil until I was 18 years old... in Tupa, Sao Paulo.)

My mother had a GBM. By the time it was diagnosed, it was too large for treatment other that for symptomatic. She lived for two months after diagnosis. However, that did not mean we were in dispare, hopeless. Yes, we were sad at times. Yet we had happy moments. We spent more time talking during those two months than in all the 48 previous years.

Now, I have a Grade III Olygodendogliona... the second time I have had a glioma. The first time was over 13 years ago. I will have surgery in the very near future... probably before Thanksgiving. As with the first time, I am hopeful that surgery will "cure" me and I will have at least 13 more years. Very Happy

_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

andersonjw · New User Joined: 05 May 2006 Posts: 3

Angelica,

It is SO very encouraging to read stories like yours, when good news is hard to come by. My mother was diagnosed with GBM shortly before Easter, had a partial re-section a week later, and is about to start her chemo and radiaiton treatment. She's 58, and was the picture of health prior to the diagnosis. We were stunned. We're all very concerned about her prognosis, and quality of life; my sister is getting married in August, and we are of course, very concerned about Mom being a part of it.

We have no illusions about how ugly this can, and probably will be, but stories like yours give me hope.

Thanks so much.
James

matynne · Regular Joined: 14 Dec 2005 Posts: 23

Hi,

Wonderful post. Exceptionally helpful people who believe in mighty powers. We doctors can only tell what our tiny knowlegde tells us. At best we can say 1% correctly. Hope we are proved wrong again and again and these hope and health stories keep coming. Tell us more......
_________________
Dr. Mateen provides hope,help and support to Mesothelioma Victims and shares his knowledge at his site www.mesothelioma-cancer-guide.com.
Visit www.mesothelioma-cancer-guide.com/mesothelioma-symptoms.html and
http://www.medical-billing-career-guide.com

	Cancer Forums Forum Index -> Brain Tumors Forum	All times are GMT - 5 Hours
Page 1 of 1

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others