Hi, Its been a while since i have been online. Let me re introduce myself.
My name is Cathy I am 29 and 12 months ago i was diagnosed with a Glioblastoma Multiforme grade 4. Since than i have had 2 brain surgerys, 6 weeks of radiation and 6 months of chemo.
I am very intrested in speaking with anyone going or gone through something similar.
My name is Terese and 20 months ago my husband was dx with a 3/4 astrocytoma. The tumour is inoperable and the biopsy showed it to be a grade 2 but the imaging indicated it was a grade 3 so it was treated as a 3 but as he declined they decided it was a 4. He is doing very well at the moment. His treatment was biopsy,radiation with concurrent chemo followed by 6 months of 5/23 chemo. During his first 5/23 chemo he declined rapidly and it looked like the fight was lost so they tried him on Avastin and he responded very well. He did 13 months of Avastin and has been off any treatment for the last 14 weeks and all seems very stable at the moment. He will have his next mri in early July. He is 52, it is tough for you being so young. Happy to chat any time, send me a private message if you like.
My hubby was only diagnosed in Feb with a GBM grade 4, he finished his chemo/radiation last month and is due to start his first round of 5/23 chemo next week. We are having our post radiation MRI tomorrow see the oncologist etc later in the week, so very nervous at the moment.
I agree with Terese you are very young and it must be tough for you, I think my hubby is too young to have this and he is 48. However, I have met another woman on here who has a 28yr old son with GBM. I also found a very good site on facebook of a young woman who is a 12 yr survivor which is so inspirational.
Feel free to write anytime
so sorry to hear about both of your husbands.
I know in my experince its sometimes alot harder for the carer than the patient.
My husband looks after me and does it well, but i know it affects him greatly.
I have 2 young boys, 3 and 1. So life is quite busy and hectic. I love it that way although my energy levels are not so good, so i get tired easily.
Terese, may i ask where your husbands tumor is?
The reason i do ask, is because in my case i had my first operation done and they did not take out all of my tumor. They said it was to close to my speech and to dangerous. After my 6 weeks of radiation, i decided to go see Dr Charlie Teo, for a second opion. Within 2 days i was having another operation, in which Dr Teo removed all of my tumor without affecting me at all.
I struggle somedays with having this diease, i try and remain positve for my family and just pray they find something (CURE EVEN) In the time i have left. 🙂
his tumour is in the motorband and he was told surgery would leave him paralysed on his right side, he is already affected on this side similiar to having had a stroke, it has been like this since he had the tonic clonic seizure that made us aware of the tumour in the first place. He was treated at St Vincents in Melbourne and then received a second opinion from Dr Kate Drummond at The Royal Melbourne, she is an expert in these tumours and she told us exactly the same thing. She said that any tumour can be removed but not all should be as the damaged caused was not worth it and in Stuarts case his quality of life would be severly affected.
So not fair but what can you do but keep on keeping on.
I'm sorry to hear your story. My husband has a GBM Grade 4 as well. He was diagnosed March 2011. He's 34. We have 3 kids, Sergio,5; Charlotte,3; & Hugo,18mnths. He's had 3 surgeries (last one on Friday). He's had chemo and radio at The San Hospital.
Its up and down, and is very tough on the family. But we're willing to fight it. Its hard for him to remain positive. And I find myself crying at the drop of the hat.
Best wishes for your journey.
Good morning all,
My name is Femme Hensen and the mother of Nicole who was diagnosed with a GBM grade 4 in Jan.2006.(age 34 then) Our world did fall apart, cut a long story short, after her initial diagnosis, surgery, rad. & chemo and a prognosis of survival 3/9 months,which we never accepted,she is doing great. For sure the road has been long. At present she is back at work fulltime and looking after her husband & son. SHe always said from day dot she is going to beat this......my girl is a massive inspiration to me and many others. Never give up hope.
Sorry to see you in this situation. You are young so you have a better chance to fight this. I'm surprised you had 2 surgeries in the past 12 months. How many months after the 1st surgery when you had the 2nd one? My partner has GBM. After 7 months and 4 cycles of TMZ, we discovered that it grew back in early March. We were told that 2nd surgery is not recommended within this short period (7 mths after surgery). Anyway, it's a bit better at this stage, thanks to the trial drug that he's on. Still there are some concerns. I guess we just have to be strong and never give up.
Kate, Im so sorry to hear you are going through this as well. Is your husband doing ok. What has made him have 3 surgerys? regrowth?
I hope you are ok. Dont be affraid to seek help if you need it. Counciling has really helped my husband, whom is great support for me.
Peanutz, I had my first surgery on the 24th of june and my second 3 months latter on the 1st of september. I have been told it doesnt matter how many are done, so long as the patient is well enough? not sure on that though. How is he doing?
HI there, I am new to this site, my husband has a GMB 4 also, after his operation on july 12 last year, his was the size of a closed fist, we were told treatment wouldn't help, but we had the 6 weeks chemo/radiation, then triple dose chemo tablets for 5 months, first scan in dec was good, scan in feb showed 4 tumors, they have sent us home, no more treatment, he is 57, but i suppose that the size of the first one was the problem. he is doing well, minus one set back a couple of weeks ago, minor stroke which caused a mayor seizure, but in true form has bounced back just great, go figure, take care everyone, hope you all make it.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.