Is it ok if I ask a question

My niece is fighting this disease but we can’t afford that treatment sad she’s only 15 and I’m still looking for places where I can get help if you do know anything please let me know

Can't believe the government couldn't help. There a you tuber that she got on some kind of Medicare and payed for everything. That I can't understand.

İs he still alive?

Mar Gon how much is the machine

Gotta love that US "health care", eh? I'm also GBM: got it in Dec. 2019. Two days after radiotherapy ended, Optune electrodes were on my head and have been since. German medical insurance pays every cent for it (24 thousand Euro per MONTH).

@@Homemadebutterr 20,000 per month without insurance. Its USA after all

​​@@juandomingoquirozmendez3246 you can rent the machine I believe. It's still expensive but maybe around $1000-1500 per month.

​@@jmail6823 I'm in the UK where could it be rented in the UK?

@@jesussaves1827 I'm going to stick to facts and research that can be peer-reviewed.

@@Kara-rt2js I'm doing well! I just came inside from spending some time looking through my telescope outside. I am still on a maintenance dose of this immunotherapy drug called Durvalumab. I did 6 weeks radiation and starting the same day as my first infusion. I was doing the infusions every 2 weeks to start for the trial. I'm an unmethylated, IDH1 mutant GBM. Over the past year, I started a podcast for brain cancer patients, caregivers and anyone else who has been affected by a brain cancer diagnosis. I try to break down the complicated terminology into easy to listen episodes and also sharing patient experiences. You can just search "Brain cancer podcast" and you'll find it. The logo is what was inside my brain so it's pretty hard to miss. It also made deciding on a logo easy, haha. My next MRI is Wednesday the 13th and treatment/results on the 15th. All my contact info is on there and I'm always around to answer more. Thank you so much for checking in!

@edda green I am very close to my 5 year anniversary!

@@InfectedChris omg I'm sor proud of u my friend also got this damn GBM she's just 13

@@PremSingh-ch3wv Oh no....that's awful. I do a podcast for brain cancer patients with information. I am thinking about doing a more focused episode on pediatric cases of high grade brain cancers. She is not alone in her fight.

Is there any cure for GBM ? Please let me know my father is also suffering from GBM

From what doctors have said there isn't any cure just alot of mri to check its not regrowing

@@suddhvachan8643 I would love to be able to tell you that there is a cure, but there is not. I will preface what I am able to say with the obvious - I do not know how old you are or how old your father is. But it is like he is over 50ish as that is the median age for GBM. A lot of the latest treatments are aimed at extending life times and qualify of life. And these Clinical Trials, be it Optune, Polio Vaccine, Tetanus Vaccine, Gamma Knife and others are aimed at stopping the spread of GBM. I do not want to give you advice on what to route to take, but from watching a few of the journeys of those with GBM and some of the companies that highlight their treatments with their patients, I think there is a good correlation that those who arm themselves early with as much information as possible on the latest treatments that are out there, have the best chance of gaining as much life as possible and quality of life as possible. To give you a fair idea of the long survival rates - From being interested in this topic, the survival stories and the fast changing pace of new treatments that seem to be moving in the right direction, one women aged in her 50's at time of diagnosis has survived 14 years (Sandy Hillburn). Another four three women and one male have survived past 10 years and I can not find any record of their deaths to this day. Two of the women were diagnosed days apart near each other in 2009 and stayed in contact and had a public reunion in 2019. They seem to still be alive today. And on the internet is the story of Stephanie Hopper nee Lipscomb. The first person injected with the modified polio vaccine. She was 20 in 2012. Her story is on the internet and it sounded so promising like a lot of the others. Unfortunately, she died last year after 8 years at the age of 28. She became a nurse, got married and was given 6 + longer than the average prognosis. And also, there is the case from 2004 of James Treadwell, whose youtube clip is an easy find. It was posted in 2011. He survived for 13 years after taking an experimental treatment route, but he was only being offered months from his standard care doctors. Lori Luedtke story is on youtube as well and the latest I can find of her is from 2019. She seems to part of the 4% club. Apologies for highlighting these people if it seems rather cold. But those who have survived to 10 years are regarded as 1% ers, those who survived to 7 years as 4%ers and 5 years as 5%ers. I really do hope this has been helpful. Take out of this what you feel is necessary, from a lot to nothing, if you wish. Consult with your fathers doctors and ask them lots of questions and GET second opinions. The road ahead is going to be long and difficult against this insidious monster. Feel free to write back if you wish and update.

@@allyt194 are you okay rn?

@@PremSingh-ch3wv still doing okay on maintenance chemo to keep tumour away and get mri every 3 months to make sure no new growths Thank you for asking

Sir what kind of treatments are there please tell me🙏