Glioblastoma Grade IV

melevy said:

New here

Hi all,

I was diagnosed with a grade IV GBM on Dec 31, 2012. Great way to start the new year, huh? Fortunately, unrelated to the tumor, I had a minor accident, and my Dr, thought I had a concussion and ordered an MRI. The tumor was only 3CM, which I understand is rather small for an initial finding. It was located in an easily accessible location, and I had a 2 hour  surgery Jan 8 2013. The surgeon reported that he got all of it, including a small margin to ensure there was none left behind. I start temodar & radiation on Feb 7. My Neuro-oncologist says that "everything looks as good as it possibly can" at this time, and he has people in his practice at 15, 17, and 26 years post-diagnosis, so I guess he knows what he's talking about.

I'm a 55YO male, and I live in the Chicago, IL area.

hello there,

how are you? how are you doing? my mum so far is responding good to the radiotherapy and to the temodar!

she is really strong, she feels tired some days more than others but thats all!

I am giving her lots of different multivitamins, and vegetarian diet, tons of fist and fruit....

I hope you are doing well too. 

love

m isabelx

Hello, I do not know if I am writing on the correct post but in mere panic and desperation I have signed up for this site.

First off I know that this is an American site, I am currently living in the UK but let me tell you a little about myself.

Both my Ma and pa died, my brother and my grandma and the only person who is looking after me now is my grandpa- one day he was acting real weird and asked me if the "tv was melting" and just started speaking real funny- I ended up calling an ambulance and was told that my grandpa had gliblastoma grade 4. They removed a lot of the tumour and after being in hospital for 8 weeks he was back to normal and completely co-herrant -then after being home caring for my grandpops he then had a funny turn again and I panicked because I thought the tumour is growing back again. turns out he has pnemonia.

Anyways, to cut a long story short I am super scared I have no other family here in England and my aunt lives in America and thats all, Im super dooper scared my grand daddy is gunna die- the nurse told me he was gunna only live for two more months and this was before my grand daddy was examined by the doctors to find out he has pnemonia.  I just worry that with this brain tumour he will leave me too just like my other family all dead and I will be all alone, I love my grandaddy so very much and I am his fulltime carer at 19. I pray every night to my mother that things will get better but seeing him in hospital everyday when he is all confused, I worry if he will end up forgetting who I am. I keep thinking it is just the delirium caused by the pnemonia infection, as last week the m.r.i scan showed no tumour(he had um? 6 weeks of radiotheraphy i think?). I am just scared- I am sorry I posts a message on here because no one is giving me information they just think I am young and stupid but I need to know all the ins and outs.

Can someone please explain to me if gliblastoma makes people real confused kinda like not him anymore or is it alzeimers as he is 75 or is it the combination of the cancer and pnemonia causing him to be confused or the radiotheraphy. I know he is old but he doesn't act old or look old and was always really super fit then one day he had the tumour,im just scared thats all.. all I can hope is he gets better as I have no one else and as for my friends?, they stopped wanting to hang out with me now that I look after my grandpa but I guess thats just teenagers huh

thank you x

shiva_miracle said:

GBM IV

Thanks Maria,

I am from India and we hope that there are some natural therapies / homeopathy that works well under such situations.

We have still not started with it however exploring such options, will definitely share if something comes up.

 

Cheers

Shiva

Hi Shiva

Very sorry to hear about your little niece...where in India do you live...my brother in law 28 years old had brain cancer...he did not survive and passed away a week ago...I know some good homeopathy treatments...but remember this cancer is very brutal...dont expect miracles...my whole family is depressed after losing him...

Hope you and your family stay strong...keep me posted if you need anything...

D

shiva_miracle said:

GBM IV

Thanks Maria,

I am from India and we hope that there are some natural therapies / homeopathy that works well under such situations.

We have still not started with it however exploring such options, will definitely share if something comes up.

 

Cheers

Shiva

hi shiva, how is your nephew, my mum has finished her radiotherapy and her quimeotharapy, 30 and 49sessions! and she is doing so so well, only sick one day and we now have a lot more chances to survirval, the treatment has not been agressive she is doing normal life!

can you get Temodal in india??? let me know in case we can help

isabelx

sneskas said:

Please help me save life to a child

Please help me to save life to a child who diagnosed glioblastoma multiforme (grade 4)!!!!

Hello, my name is Snezana and I`m from Serbia. I found you on csn.cancer.org and I desperately need your help. You said something about the doctor from Kosovo, and Kosovo is near my town, Kosovo is still part of my country Serbia. Could you ,please give me his name and address or anything that you have about him. My friends son Lazar is 12 years old boy and doctors diagnosed him glioblastoma multiforme (grade 4) about month ago. Boy is now in hospital and he had few epileptic seizures.


PLEASE HELP ME FASTES AS YOU CAN TO FIND THIS DOCTOR AND SAVE LAZARS LIFE!

This is my email address: sneska.aqua@gmail.com

advance grateful Snezana !

Hey Snjezana,

I wish all the best for Lazar.

I'm in a similar situation. Son of my sister has just received a diagnosis gliobastoma multiforme grade 4th The young man is 18 years old. We are all desperate and looking for help from all sides. Can you send me the info. about doctor from Kosovo or any useful advice.

My e-mail address: sanjadrace@gmail.com

Grateful Sanja

bethanyd said:

GBM
Hi There, sorry to hear about your sister. Please email me at my personal email bethanydoughty18@hotmail.com

My dad was diagnosed in january with a GBM Grade 4. He went downhill very fast and received radiotherapy after us pushing and pushing for help. However the radiotherapy failed. Lukily we had been researching alternative therapies. We are in contact with a doctor from kosovo who has been unbelievable. He is the only person that I can find that has actually cured people with this type of tumour. He told us what medicine to order for my dad and set him a strict protocol. Since starting this my dad has done nothing but improve! The doctors cannot believe how good he is so please please email me and i will send you this doctors details. He is amazing!

Beth

Hi - my dad was just diagnosed with GBM Stage IV....I would very much like to receive the details about the doctor you referred to in your post.  Thank you!

Susan

Hi everyone,

Firstly, bless everyone for sharing and being here for each other.

My mother was diagnosed with an inoperable cancer on 22nd May 2020 - Glioblastoma that has spread "like a tree with roots"  in her brain.  They have told my Mum that she only has about 12-18mths.  She lives in Australia and I live in Hawaii.

My mother is currently undergoing radiation 5 days a week and taking chemo in pill form for a 6 week period (sorry I can't be more specific, I am learning as I go).  She has been in hospital since 17th May and just recently has been allowed to spend Saturday and part of Sunday (last weekend) with my Dad at home.  She is undergoing physical therapy as her left leg has been affected and she now needs a walker to get around - this is why she is not allowed to be at home.  My Dad is having a hard time with the love of his life going through this and having to be alone most of the time.  He recently retired due to her condition and they were both enjoying life as usual unaware of any health concerns in April.

I plan on seeing my mum as soon as possible as I want to support her and be with her and Dad but due to COVID-19 and having to quarantine for 14 days in both Australia and Hawaii and taking care of my kids I haven't left Hawaii yet.  I have booked flights for all my kids to come with me for August 2nd with the hope that quarantine is lifted by then. They will miss about 3 weeks of school which is unfortunate because they have summer break right now and this would be the best time to go.  I have so many questions and feel super helpless right now.

I have been calling my mum in the hospital and she seems pretty upbeat but she seems to get confused and stops talking during our conversations.  While I recognize things could always have been much worse and anyone could be taken away without warning, I am feeling super anxious and emotionally empathic.  

Here are my main questions I hope some of you could give me feedback or direction on....

Has anyone had experience with any type of treatment (alternative, trial etc) that has cured or extended life expectancy for stage 4 glioblastoma?

How do I best support my mother?  I have a tendancy to overthink things and get caught up in the emotion and be selfish about protecting how I am feeling.  What can we talk about that will raise her spirits, give her hope and take her mind off her diagnosis?   Should I ask her how she is feeling?  Should I talk about her treatment? Should I avoid talking about treatment?

How do I best support my Dad and my brother who live in Australia?  I feel so removed.  I know they are hurting.  When I speak to my Dad I have a hard time keeping it together (crying during the call, although I try to keep it hidden).  We have never been an emotionally close family.

I want to be physically close to my mother and yet I don't easily have this option.  Should I go by myself as soon as possible, do the quarantine or wait until quarantine is lifted so I can bring my kids to see their Grandma probably for the last time.  My dad says my mum isn't going anywhere but mentally I see she is and I am worried if I wait 6 weeks she might not know who we are.

I will stop here.  Thanks if you read this post to this point.  Any advice and feedback on your experiences is greatly appreciated.

Tracey