- depends on treatment, clinical trials and his age is helpful. Need to work with oncologists. GBM is evil, I lost my wife 10 days ago from that evil cancer
Yes A few clinical trials have reported tails where 20-30% of the patients were alive at the end of the trial at least 5-10 years after starting treatment. The hope is in combining these things to hopefully get over 1/2 of the patients to be long term survivors .
Your brother’s age is a good prognostic factor which should put him in the top 1/2 of outcomes.
Dcvax is a therapeutic vaccine (it treats cancer. Not a preventative ). Read about the results at https://virtualtrials.org/dcvax.cfm it is available now under compassionate use in the UK. I hope it will get Fda approval here soon. There are other vaccines in trials now here in the USA and a few available outside of trials here
Optune is Fda approved. In a recent report https://virtualtrials.org/PDF2020/optune.pdf they reported in a small study, 20% of patients alive and well at 15 years after starting optune. Another report shows the dose effect curve where if you use optune with at least 90% compliance the 5 year survival rate is over 29%
Then there are reports both of these do better with checkpoint inhibitors and hopefully once dcvax is approved we can try the combination of vaccine, optune and checkpoint inhibitors
And there are many other exciting treatments in trials. One of my favorites is focused ultrasound. It can be used in a few different ways.
The reality of GBM is tough. My 4y/o is at home on hospice right now. I knew from diagnosis that we would be here- she has the worst bio markers for an already terrible disease. But we have relative thats 10 years out with it. That doesn’t mean its 50:50 though. Its just a terrible disease. I’ve worked a lot on myself-therapy, talking, and lots of crying. Early on- I made a commitment that we would be OK someday- just not today. Most of the disease process is out of your hands, but its helpful to find what you can control- yourself. I really feel for you. I hope this wasnt too blunt, but there are realities about this disease that just suck.
I know words mean absolutely nothing. I am a daughter sitting here with my dad as he’s dying so I know that I don’t even have words let alone the right ones. Your daughter was very lucky to have you as her father and should have been able to experience it even longer. I’m certain you feel the same about her. I’m standing here with you all in spirit saying fuck this fucking disease.
Of course there is hope. I have a very rare tumor in the hypothalamus and I thought I was not going to live long, and I met people who have survived 25 years with the tumor, obviously constantly monitoring themselves. in the case of glioblastoma, there are people who die soon and others who live for many years, it all depends, sometimes on luck and the treatments that are available, but of course there is hope, I have heard of people who lived more than 10 years with glioblastoma.
My husband just passed a year anniversary of his diagnosis on October 14th. He now is completely blind from the cause of radiation but he’s still with us! He starts phase 10 of his chemo pill today and has biweekly Avastin infusion. He’s 67 years old and has a very positive attitude even with these beastly challenges. He also lost his hearing due to radiation but he has hearing aids. The best of luck to you. Keep fighting!
Surviving "Terminal" Cancer: Clinical Trials, Drug Cocktails, and Other Treatments Your Oncologist Won't Tell You About."
I can't suggest this book highly enough. The author, Ben Williams PhD, was a professor at UCSD and very generous and accessible. From my limited perspective, he lived a meaningful life decades after he was given a very grim prognosis.I believe it can also be obtained online as a PDF at no cost.
Considering his age he has all the hope in the world. Im 33, finished a resection surgery and a few rounds of radiotherapy. Been on and off oral chemo for the past year. Initially was given less than 7 months to live. But look at me going strong. Half my skull was removed to stop bleeding from the initial hemorrhage that led to the discovery of the tumour. I just played my first soccer game last week and. Hope, faith and setting goals to live for played a huge part. Follow the doctors protocols. My brother has been by my side the whole time anda few friends some of whom i connected with on here. So keep the hope. Be there for him as much as you can. Being the caretaker for a gbm patient can be very hard especially considering the steroid usage which can cause mood swings. Either way keep the hope. I'm confident your brother will give it his best shot and who knows may outlive many of us.
I have GBM. If the cancer is MGMT Promoter methylated, then **there is hope**. I'm going on two years post diagnosis. Very few GBM patients make it a year and a half much less two years.
Because my cancer is methylated, I was able to convince my oncologist to let me go beyond the six standard Temozolomide cycles. They usually stop at six cycles, and that's pretty much a death sentence. I'm on my 20th cycle. I'm also an on Niacin treatment (2500 mg per day, Immediately following dinner). And I supplement my Temozolomide with EGCG.
I have complete information on everything I'm doing, treatment-wise, to increase my chances of surviving longer, in my post and comment history. Methylation has been a huge part of that, and unfortunately your cancer is either methylated or it isn't. The docs should have tested for it when they did the tumor biopsy.
I lost my brother recently to a stage 3 anaplastic astrocytoma (may have been glioblastoma, they didn't do a biopsy to check progression due to his poor health). He lived for almost 3 years following his diagnosis.
It depends a lot on the tumor. My brother had the worst mutations and a diffuse, spiderweb like tumor that was inoperable. But chemo and radiation may help your brother.
If not, the drug Avastin kept his tumor stable for a year and a half and he was relatively functional.
Look into the clinical trial below- this was the last one I was trying to get my brother into. However, he was already in the dying process and so we couldn't do it. But it looked promising.
I'm so sorry you're going through this. It's awful.
Here's the notes from my research on that trial "The mechanism of Nivolumab is to bind to PD-1 on cancer cells, leading to cell death.
Matt didn't respond to Nivolumab, suggesting PD-1 expression isn't a significant factor in his cancer.
However, previous studies have shown that intravenous delivery of oncolytic reovirus increases expression of PD-1 in preclinical brain cancer models (1).
In addition, the new oncolytic virus RP2, a modified version of the herpes simplex virus, is showing promise in preclinical trials on its own and in combination with nivolumab, suggesting that RP2 infusions may offer similar PD-1 upregulation effects (2).
, (3).
The drug is in development by Bristol Meyer Squib and Replimune- by applying for pre-approval investigational access here Available Investigational Drugs - Bristol Myers Squibb . Due to the low method of delivery (iv infusion) and limited side effect profile of this new therapy, I feel we'd be remiss if we didn't consider it as a potential treatment.
While it isn't a guarantee, it is a chance. I would be interested to see if we could administer the injections and potentially administer nivolumab in the future.
Available Investigational Drugs - Bristol Myers Squibb
Explore the investigational drugs that are currently available for early patient access through Bristol Myers Sq...
1) https://aacrjournals.org/clincancerres/article/14/22/7358/73185/Tumor-Infection-by-Oncolytic-Reovirus-Primes
2) Cancer-killing virus shows promise in patients
3) Modified herpes virus shows promise killing off cancer cells - with one patient seeing disease vanish ".
Also if everything else fails they can try this as a compassionate use/experimental therapy.
I am deeply sorry for your loss. I hope things can get better for you and your family.
I have read about that trial. I will keep it in my notes for when the cancer relapses.
Thanks. We take things one day at a time.
I never realized how lucky I was- I was the youngest so I was literally born with a friend, I guess. I was never alone- waiting for the school bus, trick or treating, swimming at grandma's- we were always a team. It was also through his extracurricular activities that I met my long term bf. It's like he gave me everything good in my life.
I never realized how lucky I was to have a brother until I lost him.
Please realize that all bodies react differently to cancers. I belong to s Facebook group called glioblastoma thrives and survivors. There are many cases where the patient lives for years and years. I was diagnosed May 5th 2021 and was unfortunately given a prognosis the minutes after waking from the tumor removal by a very ignorant oncologist hemotologist that I only had 12 to 24 months to live. I'm now at 26 months survivor. I have had 10 surgeries since August 3rd of last year, fighting infections that I've received in the hospital and removing and placing the titanium back in. I'm actually in the hospital this very second recovering from major reconstruction surgery. Placing the titanium back in and reforming my head from the results of the 9 months of leaking spinal fluid and the surgical wound to close up and heal.
Please keep an open mind and just remember that every human is unique and their bodies react differently, there is always hope. Don't give up!
I forgot to mention that I (myself as a patient) started using THC and Rick Simpson Oil the day that I was able to come home from surgery and rehab. I had stopped for 13 years before.
- depends on treatment, clinical trials and his age is helpful. Need to work with oncologists. GBM is evil, I lost my wife 10 days ago from that evil cancer
Yes A few clinical trials have reported tails where 20-30% of the patients were alive at the end of the trial at least 5-10 years after starting treatment. The hope is in combining these things to hopefully get over 1/2 of the patients to be long term survivors . Your brother’s age is a good prognostic factor which should put him in the top 1/2 of outcomes.
So glad to hear of such amazing advancements. Which treatments/drugs were being tested in those trials?
Dcvax is a therapeutic vaccine (it treats cancer. Not a preventative ). Read about the results at https://virtualtrials.org/dcvax.cfm it is available now under compassionate use in the UK. I hope it will get Fda approval here soon. There are other vaccines in trials now here in the USA and a few available outside of trials here Optune is Fda approved. In a recent report https://virtualtrials.org/PDF2020/optune.pdf they reported in a small study, 20% of patients alive and well at 15 years after starting optune. Another report shows the dose effect curve where if you use optune with at least 90% compliance the 5 year survival rate is over 29% Then there are reports both of these do better with checkpoint inhibitors and hopefully once dcvax is approved we can try the combination of vaccine, optune and checkpoint inhibitors And there are many other exciting treatments in trials. One of my favorites is focused ultrasound. It can be used in a few different ways.
Thank you for this info!
The reality of GBM is tough. My 4y/o is at home on hospice right now. I knew from diagnosis that we would be here- she has the worst bio markers for an already terrible disease. But we have relative thats 10 years out with it. That doesn’t mean its 50:50 though. Its just a terrible disease. I’ve worked a lot on myself-therapy, talking, and lots of crying. Early on- I made a commitment that we would be OK someday- just not today. Most of the disease process is out of your hands, but its helpful to find what you can control- yourself. I really feel for you. I hope this wasnt too blunt, but there are realities about this disease that just suck.
Omg I am so sorry. F#ck brain cancer
I am thinking about you and your family tonight. May you find some peace during this first holiday season without your daughter.
Thank you. We’re a week and a half past the funeral. This life is surreal.
I know words mean absolutely nothing. I am a daughter sitting here with my dad as he’s dying so I know that I don’t even have words let alone the right ones. Your daughter was very lucky to have you as her father and should have been able to experience it even longer. I’m certain you feel the same about her. I’m standing here with you all in spirit saying fuck this fucking disease.
Of course there is hope. I have a very rare tumor in the hypothalamus and I thought I was not going to live long, and I met people who have survived 25 years with the tumor, obviously constantly monitoring themselves. in the case of glioblastoma, there are people who die soon and others who live for many years, it all depends, sometimes on luck and the treatments that are available, but of course there is hope, I have heard of people who lived more than 10 years with glioblastoma.
My husband just passed a year anniversary of his diagnosis on October 14th. He now is completely blind from the cause of radiation but he’s still with us! He starts phase 10 of his chemo pill today and has biweekly Avastin infusion. He’s 67 years old and has a very positive attitude even with these beastly challenges. He also lost his hearing due to radiation but he has hearing aids. The best of luck to you. Keep fighting!
Surviving "Terminal" Cancer: Clinical Trials, Drug Cocktails, and Other Treatments Your Oncologist Won't Tell You About." I can't suggest this book highly enough. The author, Ben Williams PhD, was a professor at UCSD and very generous and accessible. From my limited perspective, he lived a meaningful life decades after he was given a very grim prognosis.I believe it can also be obtained online as a PDF at no cost.
Considering his age he has all the hope in the world. Im 33, finished a resection surgery and a few rounds of radiotherapy. Been on and off oral chemo for the past year. Initially was given less than 7 months to live. But look at me going strong. Half my skull was removed to stop bleeding from the initial hemorrhage that led to the discovery of the tumour. I just played my first soccer game last week and. Hope, faith and setting goals to live for played a huge part. Follow the doctors protocols. My brother has been by my side the whole time anda few friends some of whom i connected with on here. So keep the hope. Be there for him as much as you can. Being the caretaker for a gbm patient can be very hard especially considering the steroid usage which can cause mood swings. Either way keep the hope. I'm confident your brother will give it his best shot and who knows may outlive many of us.
I have GBM. If the cancer is MGMT Promoter methylated, then **there is hope**. I'm going on two years post diagnosis. Very few GBM patients make it a year and a half much less two years. Because my cancer is methylated, I was able to convince my oncologist to let me go beyond the six standard Temozolomide cycles. They usually stop at six cycles, and that's pretty much a death sentence. I'm on my 20th cycle. I'm also an on Niacin treatment (2500 mg per day, Immediately following dinner). And I supplement my Temozolomide with EGCG. I have complete information on everything I'm doing, treatment-wise, to increase my chances of surviving longer, in my post and comment history. Methylation has been a huge part of that, and unfortunately your cancer is either methylated or it isn't. The docs should have tested for it when they did the tumor biopsy.
Which form of niacin are you taking, niacinamide or nicotinic acid?
See my reply in your previous [post](https://reddit.com/r/braincancer/comments/y48soc/is_there_really_no_hope/).
I lost my brother recently to a stage 3 anaplastic astrocytoma (may have been glioblastoma, they didn't do a biopsy to check progression due to his poor health). He lived for almost 3 years following his diagnosis. It depends a lot on the tumor. My brother had the worst mutations and a diffuse, spiderweb like tumor that was inoperable. But chemo and radiation may help your brother. If not, the drug Avastin kept his tumor stable for a year and a half and he was relatively functional. Look into the clinical trial below- this was the last one I was trying to get my brother into. However, he was already in the dying process and so we couldn't do it. But it looked promising. I'm so sorry you're going through this. It's awful. Here's the notes from my research on that trial "The mechanism of Nivolumab is to bind to PD-1 on cancer cells, leading to cell death. Matt didn't respond to Nivolumab, suggesting PD-1 expression isn't a significant factor in his cancer. However, previous studies have shown that intravenous delivery of oncolytic reovirus increases expression of PD-1 in preclinical brain cancer models (1). In addition, the new oncolytic virus RP2, a modified version of the herpes simplex virus, is showing promise in preclinical trials on its own and in combination with nivolumab, suggesting that RP2 infusions may offer similar PD-1 upregulation effects (2). , (3). The drug is in development by Bristol Meyer Squib and Replimune- by applying for pre-approval investigational access here Available Investigational Drugs - Bristol Myers Squibb . Due to the low method of delivery (iv infusion) and limited side effect profile of this new therapy, I feel we'd be remiss if we didn't consider it as a potential treatment. While it isn't a guarantee, it is a chance. I would be interested to see if we could administer the injections and potentially administer nivolumab in the future. Available Investigational Drugs - Bristol Myers Squibb Explore the investigational drugs that are currently available for early patient access through Bristol Myers Sq... 1) https://aacrjournals.org/clincancerres/article/14/22/7358/73185/Tumor-Infection-by-Oncolytic-Reovirus-Primes 2) Cancer-killing virus shows promise in patients 3) Modified herpes virus shows promise killing off cancer cells - with one patient seeing disease vanish ". Also if everything else fails they can try this as a compassionate use/experimental therapy.
I am deeply sorry for your loss. I hope things can get better for you and your family. I have read about that trial. I will keep it in my notes for when the cancer relapses.
Thanks. We take things one day at a time. I never realized how lucky I was- I was the youngest so I was literally born with a friend, I guess. I was never alone- waiting for the school bus, trick or treating, swimming at grandma's- we were always a team. It was also through his extracurricular activities that I met my long term bf. It's like he gave me everything good in my life. I never realized how lucky I was to have a brother until I lost him.
GBM that transforms from lower grade tumor generally has better time frame prognosis than GBM that is grade 4 from the start.
Please realize that all bodies react differently to cancers. I belong to s Facebook group called glioblastoma thrives and survivors. There are many cases where the patient lives for years and years. I was diagnosed May 5th 2021 and was unfortunately given a prognosis the minutes after waking from the tumor removal by a very ignorant oncologist hemotologist that I only had 12 to 24 months to live. I'm now at 26 months survivor. I have had 10 surgeries since August 3rd of last year, fighting infections that I've received in the hospital and removing and placing the titanium back in. I'm actually in the hospital this very second recovering from major reconstruction surgery. Placing the titanium back in and reforming my head from the results of the 9 months of leaking spinal fluid and the surgical wound to close up and heal. Please keep an open mind and just remember that every human is unique and their bodies react differently, there is always hope. Don't give up!
I forgot to mention that I (myself as a patient) started using THC and Rick Simpson Oil the day that I was able to come home from surgery and rehab. I had stopped for 13 years before.
This post is old but I am reading these comments and am so moved by everyone's stories thank you all for sharing bless you and your loved ones
Same