Glioblastoma Multiforme (grade 4)

Sceerd said:

Update
I'm still here!! I was put on a Clinical Trial with Vorinostat, Avastin, and CPT-11. However, I was getting really sick and the cause was determined to be CPT-11 which was dropped and now I'm tolerating just fine. All my MRI's have been clean and life is good. I'm totally expecting a treatment failure eventually but I have a plan for that. Also I'm confident there is or will be a durable treatment in the very near future. Have a look at the Stem Cell Vaccines like the one from Immunocellular ICT-121 looks very promising.In the last year I've learned so much, bonded with my estranged family, and got married. My whole lifestyle has changed and I have a completely new perspective.I am much more food and nutrition conscience than I use to be and am enjoying life in a completely different way. I have no expectation that I'm going to beat this thing but at the very least the time I've had and will have is worth most of the life I had before. Having said that I am optimistic things will work out.

Sounds like you are already beating this thing!!

My mom was diagnosed in October and had surgery to remove the tumor in her frontal lobe on 10/13. They got just about all of the tumor except for a small part that was too close to a sensitive part of the brain. She is currently doing radiation and chemo (Temodar) for 6 weeks. We are remaining very hopeful and optimistic. She's doing well so far with the treatments, little to no side effects to date. I see a lot of the comments in this thread are old, but I see that the more recent one's are all very optimistic and that gives me a lot of hope. Sounds like medicine has come a long way and there are many more treatments for this type of tumor. I pray that my mom will be around for many years to come. Yes, it will be a long hard road, but that's okay...we can do it and we will do it.

Good luck to you and remain positive and in prayer.

Diamondhorse_1 said:

Glioblastoma Grade 4
In March of this year my 14 year old son was diagnosed with a Glioblastoma Grade 4 in his spinal cord. He had surgery in March and then received Proton Therapy, which is a form of radiation, and is currently on Temodar. I was told by the doctor that this is very rare and these normally develop in the brain. Due to the surgery, my son is in the process of learning how to walk. Has anyone heard of this or does anyone have any information or know where I can get information on this? I have tried researching this and the information that is available is very limited.

Thanks

Pamela

GRADE IV GBM
My 17 YO son was diagnsed back in February with GBM grade IV. Please read my story in my expressions. I added you as friend. If you have any questions that I can help you with or anything after you read my story, please contact me on this webite or email sjonesleo@comcast.net.

Dulcie60 said:

GBM
Hello Tiger729

I know what you are going through. My husband has been through the same chemo. It is early days for your husband and it will get better as he gets stronger after the op, I'm sure. My husband was rushed into surgery in November 2007. He then had radio/chemo, then chemo. He has never looked back since his op, has no symptoms and his MRIs have all been stable. He lives a perfectly normal life (in fact he's on a plane to China as I write for work reasons). On my birthday in April we went for an 8 mile walk. It's our 25th anniversary of being together on May 15. We never thought we'd make that date. Good luck to you, your husband and family.

gbm
Hello, My husband was diagnosed with GBM IV oct. 2009. He had surgery and radiation and temador. It returned very small in August 2010. more surgery and now avaston every other week. Except for being a little ADD like and tired you wouldn't even know he was sick. He had a clear mri yesterday. I can't get him to lay off the meat and sugar but he is doing some natural supplements - Flor essence, turmeric, vitamin d, and Dr. Weils mushroom pills. I wondered if anyone else has any advice. And I wanted to ask Dulci60 if your husband is still doing treatments of any kind. Our 25th anniversary is 2012 and I am hoping we can also celebrate!

Toshy said:

30+ years!
I was diagnosed when I was 7 in 1977. It was in operable as it was on my brainstem. I had radiation treatments in late 70's, chemo in early 80's. Acouple of years after stopping chemo. I was told the tumor no longer showed up on the CT scan. Later MRIs continued to be clear.

I was told later I had been given 6 months to live and within a month or two it was 6 weeks... Although mine has been a hard life I'd say, it's been a very happy one!

I was diagnosised with an malignant astrocytoma but now the Cleveland Clinic doctor I've just seen is guessing it was actually a GBM.

If you are interested in more details about my story see "my story" in my EXPRESSIONS.

Please share any info you
Please share any info you may have! We can be reached at KAC_Warrior@yahoo.com. My husband has a GBMlevel IV and we are looking for any insight that survivors may have!

moonwitch said:

My beautiful amazingly
My beautiful amazingly strong mom, 48, had a seizure July 2 2012 and was rushed to emergency where they found her brain tumor. She had surgery on July 14 where they removed most of the tumor and was diagnosed with a Glioblastoma stage 4 Aug 15. Started chemo/radiation aug 22 and completed one out of six weeks of treatment when she became incredibly sick. As her caregiver I made her go to emergency, even though she didn't want to. Her tumor had doubled in size since her surgery. They told me my mom had days or weeks left to live. She was in the hospital for 3 days loosing her mind. She couldn't formulate sentences correctly or get out of her bed anymore. She kept talking about deceased relatives and pets in the room. She also told me she would die on sept 11. I decided to take her home with hospice and she died two days later on Sept 11, 2012. My mom was my best friend, I'm 26 and am happy she's not suffering anymore but I miss her very much. This is an EXTREMELY aggressive disease and the treatment only made her quality of life worse in my opinion. She had a very positive attitude up to her last waking day and I am sorry for anyone who has to deal with this monster

I am very sorry to hear
I am very sorry to hear about your mother passing, I don't know how I would cope, My father was diagnosed August 2011 with GBM Stage 4,His tumor was the size of a large orange and they cut out what they could straight away, after that He REFUSED Chemotherapy and Radiation, and instead tried natural medicines, organic diets etc. They told us he would only have 3 months left because he had turned down therapy, but I'm glad my dad stayed strong and turned down chemo and radiation because from what I've seen it only makes everybody feel 100x worse, After his surgery he was on top of the world said he felt 15 years younger, Now a year and 2 months later the tumor had grown back to how big it previously was and they have cut it out again, only this time they didn't give him a "time" as most doctors are surprised he is walking and talking, the only thing he has ever had trouble with was his speech just after the operation, but it has come back perfectly fine now, He has seizures sometimes but apart from that he has a very positive attitude and still turns down chemo and radiation even though they try and talk him into it EVERY time he has an appointment. I was really sorry to read about your mothers suffering treatment really does make it so much worse its depressing. Hoping my dad gets through his, It really is the most aggressive type. I wish you all the best, She is in a better place now xxx

JCM2468 said:

I am very sorry to hear
I am very sorry to hear about your mother passing, I don't know how I would cope, My father was diagnosed August 2011 with GBM Stage 4,His tumor was the size of a large orange and they cut out what they could straight away, after that He REFUSED Chemotherapy and Radiation, and instead tried natural medicines, organic diets etc. They told us he would only have 3 months left because he had turned down therapy, but I'm glad my dad stayed strong and turned down chemo and radiation because from what I've seen it only makes everybody feel 100x worse, After his surgery he was on top of the world said he felt 15 years younger, Now a year and 2 months later the tumor had grown back to how big it previously was and they have cut it out again, only this time they didn't give him a "time" as most doctors are surprised he is walking and talking, the only thing he has ever had trouble with was his speech just after the operation, but it has come back perfectly fine now, He has seizures sometimes but apart from that he has a very positive attitude and still turns down chemo and radiation even though they try and talk him into it EVERY time he has an appointment. I was really sorry to read about your mothers suffering treatment really does make it so much worse its depressing. Hoping my dad gets through his, It really is the most aggressive type. I wish you all the best, She is in a better place now xxx

Living happy is what really matter
Hi JCM,

I really appreciate your father strength and wish all patients wll be as strong as him.
My father, 60 years, who I love so much and I can't imagine a life without him, was diagnostic with GBM IV early July 2012, he had only biopsy in august and had 6 1/2 weeks of radio+chemo therapy. Now he is back on a second chemotherapy treatment but he is feeling very weak (right hand and leg barely move, and can not read or speak in a proper way). What really kills me now is whenever I want to speak with him he always say: sorry I can't speak, sorry I can't do anything --> he is being sorry and we can not do anything about it !!!!
I know this is a deadly illness but I feel that weakness is killing my father, he used to be always so strong so wise and so happy (he used to make us laugh all the time) and now I see him lost in a world that I can't understand, and I see in his eyes that he wants to give up but at the same time he is accepting this for us.
If I will have a will it will be: either bring dad as he was or take him, I can't stand the fact that my father feels weak and he is being sorry about that and I can't explain to him that we love him and it is ok, he is strong he has a character and this is killing me.
I sometimes try to imagine what he feels but I can't, I feel that he is lost in a world tat no body can understand. He asked me many times what is happening to him ? why he can not read any more, why he can not speak properly, why he is feeling weak, and I LIED, I couldn't tell him the truth, I know that he knows but I never was able to tell him the truth, I hate GBM and I hate whatever created his GBM.
I hope the best for everybody but I hope that we live proud and healthy or we die

My granddaddy has the same

My granddaddy has the same tumor, I am scared because it never really sunk in at all and everyday I read a lot of stuff about this tumor and I still remain to be positive because although there are a lot of horror stories about this tumor, there are also the glimmer of hope that there are survivors some even live years!

I know my grand daddys old, 75 but I am not gunna give up- I am looking everywhere for answers,advice and information. I have probably done more reading now in my whole entire life. I know that I live in the UK but I have no where else to turn to, my parents are dead,brother and my grandaddy is the one to be my parent so now it's all so scary for me.

Reading peoples experiences here helps a lot, it makes me feel a bit better and sometimes cry too. My grandaddy had his tumor removed but not fully there is a small bit in there still and he has undergone radiotheraphy with a course of steroids and he was fine once the tumor was removed and radiotheraphy I had the sound of mind person back into my life BUT this February I saw a dramatic decline in his memory,his state of mind and everything was going crazy so he was omited to hospital, they found out he had pnemonia I think? because he is sick and old if I am honest with myself, thats why he got it and I don't think this is the case with all cancer patients as I am not wise enough on the subject.

 

The doctor explained to me the radiotheraphy only helps contain the cancer from not spreading or getting worse and does not kill the good cells like chemo does but again, I am unsure on it all as it is all overwhelming to take in as I don't have any other family to support me or fully advice or help me absorb this all in.

I am scared if I am honest as I let the horror stories consume me and people like the nurses tell me horrible things when that is not even their job to do so, it is the consultant who deals with his case. I remain positive every single day, pray to my mum for courage and strength and pray for everyone who is going through this situation too. I like reading the stories because knowing I am not alone helps me a lot.

 

Positivity is the key, I sure as hell feel like I have had to do a lot of growing up lately but I personally take everyday as it comes now and cross every single bridge when it comes to it.When people tell me negative things I push it aside and the important thing is I have this pact with my grandaddy to never give up!

JCM2468 said:

I am very sorry to hear
I am very sorry to hear about your mother passing, I don't know how I would cope, My father was diagnosed August 2011 with GBM Stage 4,His tumor was the size of a large orange and they cut out what they could straight away, after that He REFUSED Chemotherapy and Radiation, and instead tried natural medicines, organic diets etc. They told us he would only have 3 months left because he had turned down therapy, but I'm glad my dad stayed strong and turned down chemo and radiation because from what I've seen it only makes everybody feel 100x worse, After his surgery he was on top of the world said he felt 15 years younger, Now a year and 2 months later the tumor had grown back to how big it previously was and they have cut it out again, only this time they didn't give him a "time" as most doctors are surprised he is walking and talking, the only thing he has ever had trouble with was his speech just after the operation, but it has come back perfectly fine now, He has seizures sometimes but apart from that he has a very positive attitude and still turns down chemo and radiation even though they try and talk him into it EVERY time he has an appointment. I was really sorry to read about your mothers suffering treatment really does make it so much worse its depressing. Hoping my dad gets through his, It really is the most aggressive type. I wish you all the best, She is in a better place now xxx

GBV Support

Hi ! 

My mom was diagnosed 3 weeks ago with GBM Stage 4.  It was removed and from what they tell us most of it is gone.  I was hoping that you would be able to give me some information and support as we start chemo and radiation.

Please contact me if you would like

lime19@hotmail.com

Thank you

Jennifer 33, Canada

Glioblastome grade 4

  I was diagnosised 2 years ago. I had surgery, most of the tumor was removed, then had 30 radiation treatments and 6 months of Chemo pil (Temodar). After the Chemo, my Oncologist wanted me to continue the Chemo for another 12 months, he said he didn't know of anything else he could do, so I went to Cleveland Clinic for a 2nd opinion. I qualified for a new study program I am on the study for a 1st occurance. After 3 months on the study and another course of Temodar, my remaining tumor had shrank 50%. Currently, the tumor has continued to shrink although minimal, but it is certainly not growing! Below is some information on the study if you're interested. Good luck and God bless you!

Recurrent Glioblastoma Treatment Options