Discussion
No I don't have one. To save you looking it up it's one of the most deadly forms of brain cancer.
Unfortunately my younger brother does have it.
A while ago he took himself out to Ukraine to live, having married a Ukrainian girl (which didn't end well but that's another story). Last September he was having intense migraine headaches so went to see a doctor. He paid for an MRI scan and it showed a large tumor on the left side of his brain, as well as lots of inflammation. Surgery was recommended but Ted decided to go a different route. Of course at that time he didn't really know what he was dealing with. He chose to attack it with a dietary regime, eating as many supposed cancer killing foods as he could find, as well as keeping up his usual exercise regime.
After seven weeks he felt much better, the headaches had gone and another MRI scan was done. It confirmed the inflammation was all but gone and the tumor looked smaller.
Great. He thought, and we hoped, he'd beaten it. But despite keeping to the same regime, the headaches started coming back in December. By January he admitted defeat and flew back to the UK to be seen by a doctor here. I picked him up at Luton airport to take him to Cornwall where he would be staying with our mother and near the rest of the family, and where his doctor is. But we didn't make it that far as on the journey down he decided he needed to see a doctor right away, he really wasn't feeling great. I took him straight into Derriford hospital in Plymouth, stayed with him for the five hours it took to be seen and then left him there. I won't go into all the details but he stayed there a few days and then was sent home (to mother's) with some drugs and steroids and so on, and surgery was booked for the beginning of February.
Surgery went ahead, Ted was injected with a dye to show the tumor up, and was woken during the operation so he could perform mental tasks while the surgeon operated. We went to see him the next day and he was discharged then, and we took him home. We weren't told how much of the tumor was removed, but radiation and chemotherapy was mentioned. We assumed that this would be to kill whatever was left and then Ted would be right as rain. I should mention that our father also had a brain tumor removed, a benign one, in the late 70s and he lived a further 25 odd years and that wasn't what killed him. So we thought it would be the same story with Ted.
But not so. He had a consultation last week when he was told what it was. A grade 4 Glioblastoma, the most aggressive kind. He was told to expect a 50% chance of living another 12 months, and with radiation and chemo perhaps a few more months.
To say we were all shocked and devastated just doesn't cover it. I just did not know what to say to my own brother. He said it didn't feel like reality, and it didn't. I think I sat down and cried a few times that night. God knows what his state of mind was. I spoke to other family members on the phone over the next couple of days and it was the same story. Not knowing what to think or say. He's 46. He's always been far more into fitness than me, he works out and goes mountain biking a lot, and is always looking at ways of improving his diet. Me not so much, I eat reasonably well but haven't always been too careful. So by rights it should be me that ends up with cancer not him. It just isn't fair.
I got to make the journey down again at the end of the week and I was so glad I did. Ted wasn't taking it lying down. He was his usual self, and in fighting mood. He's decided that if chemo is only going to give him a few more months and he'll spend much of that time being sick, he doesn't want it. He's going to fight it doing what he did at first, because we know it must have been working to some degree.
I know it might sound like we're just clutching at straws but we've come across a lot of things that suggest this doesn't have to be a death sentence. Others have beaten it but not by going the medical route.
First thing we learned is that a keto diet can stop cancer. Because cancer cells can only live on glucose or glutamines, not ketones. So that's the first line of attack. It also gives us a clue as to why things went wrong in December. Vitamin D looks like it might be a factor - which as you should know if you're reading this section, we get from sunlight. It's important for the immune system and also we found a video describing that it has a role in the suppression of glutamine.
Aside from that Ted is looking into all the other substances that are said to be cancer killers. He found a study done on berberine which sounds positive. we looked at a study on phyto therapy which sounds like it's had some success but we don't know what that success rate is. We looked at a study done on anti angiogenesis and there are apparently foods which achieve the same as some chemotherapies in this.
We have to hope that we find something in all this that is going to work, even if it's only to the degree that it stops the tumor growing back quickly. Otherwise, it's game over and I end up losing the younger brother I love dearly.
So why am I writing this to a bunch of strangers on the internet? I don't know really but I'm not looking for sympathy.
I think I'd like to know if anyone has been or is going through the same thing. If anyone can relate to this, if anyone's tried to do the same, or knows anyone who has done and succeeded. Certainly if anyone has any advice on living on a ketogenic diet - especially with cutting out dairy at the same time which I think Ted wants to do to try and eliminate the glutamine - then that would be very welcome. Any and all information could be of some benefit. The one thing we've got that gives us hope is that the surgeon at the hospital has agreed that the tumor didn't increase in size between the first scan in September and the one just prior to surgery. So Ted was doing something right but just not enough, or not consistently enough. We need to figure out what worked and why the tumor started growing again.
Unfortunately my younger brother does have it.
A while ago he took himself out to Ukraine to live, having married a Ukrainian girl (which didn't end well but that's another story). Last September he was having intense migraine headaches so went to see a doctor. He paid for an MRI scan and it showed a large tumor on the left side of his brain, as well as lots of inflammation. Surgery was recommended but Ted decided to go a different route. Of course at that time he didn't really know what he was dealing with. He chose to attack it with a dietary regime, eating as many supposed cancer killing foods as he could find, as well as keeping up his usual exercise regime.
After seven weeks he felt much better, the headaches had gone and another MRI scan was done. It confirmed the inflammation was all but gone and the tumor looked smaller.
Great. He thought, and we hoped, he'd beaten it. But despite keeping to the same regime, the headaches started coming back in December. By January he admitted defeat and flew back to the UK to be seen by a doctor here. I picked him up at Luton airport to take him to Cornwall where he would be staying with our mother and near the rest of the family, and where his doctor is. But we didn't make it that far as on the journey down he decided he needed to see a doctor right away, he really wasn't feeling great. I took him straight into Derriford hospital in Plymouth, stayed with him for the five hours it took to be seen and then left him there. I won't go into all the details but he stayed there a few days and then was sent home (to mother's) with some drugs and steroids and so on, and surgery was booked for the beginning of February.
Surgery went ahead, Ted was injected with a dye to show the tumor up, and was woken during the operation so he could perform mental tasks while the surgeon operated. We went to see him the next day and he was discharged then, and we took him home. We weren't told how much of the tumor was removed, but radiation and chemotherapy was mentioned. We assumed that this would be to kill whatever was left and then Ted would be right as rain. I should mention that our father also had a brain tumor removed, a benign one, in the late 70s and he lived a further 25 odd years and that wasn't what killed him. So we thought it would be the same story with Ted.
But not so. He had a consultation last week when he was told what it was. A grade 4 Glioblastoma, the most aggressive kind. He was told to expect a 50% chance of living another 12 months, and with radiation and chemo perhaps a few more months.
To say we were all shocked and devastated just doesn't cover it. I just did not know what to say to my own brother. He said it didn't feel like reality, and it didn't. I think I sat down and cried a few times that night. God knows what his state of mind was. I spoke to other family members on the phone over the next couple of days and it was the same story. Not knowing what to think or say. He's 46. He's always been far more into fitness than me, he works out and goes mountain biking a lot, and is always looking at ways of improving his diet. Me not so much, I eat reasonably well but haven't always been too careful. So by rights it should be me that ends up with cancer not him. It just isn't fair.
I got to make the journey down again at the end of the week and I was so glad I did. Ted wasn't taking it lying down. He was his usual self, and in fighting mood. He's decided that if chemo is only going to give him a few more months and he'll spend much of that time being sick, he doesn't want it. He's going to fight it doing what he did at first, because we know it must have been working to some degree.
I know it might sound like we're just clutching at straws but we've come across a lot of things that suggest this doesn't have to be a death sentence. Others have beaten it but not by going the medical route.
First thing we learned is that a keto diet can stop cancer. Because cancer cells can only live on glucose or glutamines, not ketones. So that's the first line of attack. It also gives us a clue as to why things went wrong in December. Vitamin D looks like it might be a factor - which as you should know if you're reading this section, we get from sunlight. It's important for the immune system and also we found a video describing that it has a role in the suppression of glutamine.
Aside from that Ted is looking into all the other substances that are said to be cancer killers. He found a study done on berberine which sounds positive. we looked at a study on phyto therapy which sounds like it's had some success but we don't know what that success rate is. We looked at a study done on anti angiogenesis and there are apparently foods which achieve the same as some chemotherapies in this.
We have to hope that we find something in all this that is going to work, even if it's only to the degree that it stops the tumor growing back quickly. Otherwise, it's game over and I end up losing the younger brother I love dearly.
So why am I writing this to a bunch of strangers on the internet? I don't know really but I'm not looking for sympathy.
I think I'd like to know if anyone has been or is going through the same thing. If anyone can relate to this, if anyone's tried to do the same, or knows anyone who has done and succeeded. Certainly if anyone has any advice on living on a ketogenic diet - especially with cutting out dairy at the same time which I think Ted wants to do to try and eliminate the glutamine - then that would be very welcome. Any and all information could be of some benefit. The one thing we've got that gives us hope is that the surgeon at the hospital has agreed that the tumor didn't increase in size between the first scan in September and the one just prior to surgery. So Ted was doing something right but just not enough, or not consistently enough. We need to figure out what worked and why the tumor started growing again.
All the best with the battle ahead and sending positive thoughts for your brother.
You may want to take a look at this thread that's been running for a long time on the subject of cancer.
https://www.pistonheads.com/gassing/topic.asp?h=0&...
You may want to take a look at this thread that's been running for a long time on the subject of cancer.
https://www.pistonheads.com/gassing/topic.asp?h=0&...
I would suggest you have a look at the brainstrust website :
https://brainstrust.org.uk
They offer great advice. I do have experience very recently of glioblastoma. Unfortunately my result isn’t positive but I’m aware that some very good work is being done now into research which hopefully means there will be greater success in the future.
https://brainstrust.org.uk
They offer great advice. I do have experience very recently of glioblastoma. Unfortunately my result isn’t positive but I’m aware that some very good work is being done now into research which hopefully means there will be greater success in the future.
Hello OP and firstly sorry for what must be devastating news. I went through something similar with a family member but I am by no means an expert.
If I was to offer some advice then it would be to think carefully about undergoing radiation. In our case it may(or may not) have given a bit longer but in retrospect it was at the expense of quality of life.
As for other treatments I did see a lot of cases where diet could be beneficial but this was in conjunction with cannabis oil. There have been many cases where people have seen excellent results. In our case we got there a bit too late but I would definitely recommend having a look into it. There is something called Rick Simpson oil which is mix of CBD and THC taken from the cannabis plant There have been studies to suggest it can shrink tumours in some cases.
Best wishes
If I was to offer some advice then it would be to think carefully about undergoing radiation. In our case it may(or may not) have given a bit longer but in retrospect it was at the expense of quality of life.
As for other treatments I did see a lot of cases where diet could be beneficial but this was in conjunction with cannabis oil. There have been many cases where people have seen excellent results. In our case we got there a bit too late but I would definitely recommend having a look into it. There is something called Rick Simpson oil which is mix of CBD and THC taken from the cannabis plant There have been studies to suggest it can shrink tumours in some cases.
Best wishes
Edited by Opara on Tuesday 5th March 19:06
This documentary & website might be worth a look.
https://www.thebraintumourcharity.org/about-us/par...
All the best for your brother.
https://www.thebraintumourcharity.org/about-us/par...
All the best for your brother.
king arthur said:
We weren't told how much of the tumor was removed, but radiation and chemotherapy was mentioned. We assumed that this would be to kill whatever was left and then Ted would be right as rain. I should mention that our father also had a brain tumor removed, a benign one, in the late 70s and he lived a further 25 odd years and that wasn't what killed him. So we thought it would be the same story with Ted.
But not so.
Very sorry to hear about your brother, but from what you've said, I think your expectations were mis-manged by the hospital. The survival rates for Glioblastoma Multiforme are ridiculously low, close to zero in fact. The fact that you thought he would be "as right as rain" makes me think you weren't properly informed in the first place. But not so.
It's a real f
ker. to put it mildly. vtechead said:
Have a look into hyperbaric oxygen therapy too and have a look at Professor Thomas Seyfried on youtube - he treats cancer as a metabolic disease rather than a genetic one which seems to be the route you are going down anyway with the keto therapy.
GOOD LUCK !
Thanks, yes indeed we've both been watching Seyfreid's videos, in fact it was an interview he did with Dr. Eric Berg that put us onto him. Ted says he's downloaded his book as a reference. He's also looking into the hyperbaric oxygen thing, apparently he can get access to one and it's not as expensive as he feared where he is.GOOD LUCK !
So far he's doing well with the keto diet, he's hit a high level of ketones and got his blood sugar down low. He's also doing intermittent fasting, and eating apricot seeds, and we've looked into GcMAF - now when you look into the story of that it becomes a bit of a rabbit hole.
TwigtheWonderkid said:
Very sorry to hear about your brother, but from what you've said, I think your expectations were mis-manged by the hospital. The survival rates for Glioblastoma Multiforme are ridiculously low, close to zero in fact. The fact that you thought he would be "as right as rain" makes me think you weren't properly informed in the first place.
It's a real fker. to put it mildly.
He wasn't really told much of anything until the consultation after the op. That was when he was told exactly what it was along with the prognosis. They didn't even let him see the MRI scan he had afterwards, or how much they were able to remove, so until he gets at least two more scans privately we won't know whether he's winning or losing.It's a real f
ker. to put it mildly. I am very sorry to hear about your brother. All I can offer is my best wishes and I do.
Both my younger brothers do my absolute nut in but I know what they mean to me so I cant even try to understand what you will be going through.
What I will say though, is make sure you take some time for yourself. You will not be able to support your brother or you family members is you can not support yourself.
My regards...
Both my younger brothers do my absolute nut in but I know what they mean to me so I cant even try to understand what you will be going through.
What I will say though, is make sure you take some time for yourself. You will not be able to support your brother or you family members is you can not support yourself.
My regards...
Sorry to hear about your brother. I hope he is managing to keep his spirits up.
My father had this and I was living overseas. He and my stepmother kept me in the dark about the type so I wouldn't worry too much. That was a poor decision in retrospect as I would have loved to spend more time with him.
As far as treatment goes this was in 2001 and I believe that with the dye the surgery these days is more effective but it still can't cure. Radiation and chemo was hard work with some debilitating side effects but once that was over and he was just using steroids for symptom management he managed to keep working, travelled solo round Europe to see some of his youthful haunts and got some skiing in. He was happy as far as I could tell.
So hope for the best, plan for the worst and encourage decisions that prioritise quality of life.
My father had this and I was living overseas. He and my stepmother kept me in the dark about the type so I wouldn't worry too much. That was a poor decision in retrospect as I would have loved to spend more time with him.
As far as treatment goes this was in 2001 and I believe that with the dye the surgery these days is more effective but it still can't cure. Radiation and chemo was hard work with some debilitating side effects but once that was over and he was just using steroids for symptom management he managed to keep working, travelled solo round Europe to see some of his youthful haunts and got some skiing in. He was happy as far as I could tell.
So hope for the best, plan for the worst and encourage decisions that prioritise quality of life.
My wife was diagnosed with GBM on 13 Nov, and had surgery on 21 Nov. Radio and chemotherapy treatment will start in the next couple of weeks. Very interesting stuff about the diet, I will discuss it with her. Unfortunately the tumour has affected her eyesight (she is 'blind' on her right hand side), has very limited short term memory and very poor cognitive skills. So a discussion about a new diet probably won't get very far; perhaps I should just do it.
Sorry chaps. I should have updated this.
My brother passed away in the early hours of Wednesday the 31st July, at his home in Novomoscovsk in Ukraine. Although for a time it seemed like the diet and other things he was doing were helping, once the tumour took hold again there was no stopping it. The only fortunate thing was that I was able to get to Ukraine to be with him before he went. I was by his side when he went as was his Ukrainian girlfriend. He had gone into a coma and eventually stopped breathing, despite our desperate efforts to resuscitate him.
Still can't really believe I have to live the rest of my life without my younger brother being around. It's just not the way you expect things to pan out, is it?
My brother passed away in the early hours of Wednesday the 31st July, at his home in Novomoscovsk in Ukraine. Although for a time it seemed like the diet and other things he was doing were helping, once the tumour took hold again there was no stopping it. The only fortunate thing was that I was able to get to Ukraine to be with him before he went. I was by his side when he went as was his Ukrainian girlfriend. He had gone into a coma and eventually stopped breathing, despite our desperate efforts to resuscitate him.
Still can't really believe I have to live the rest of my life without my younger brother being around. It's just not the way you expect things to pan out, is it?
@King Arthur I'm really sorry to hear about your brother. I was hoping to hear that the diet change was helping him and something I could recommend to my dad. My deepest condolences to you and your family
@tweenster - It sounds like your wife is at a similar stage to my Dad. He was diagnosed with a 7cm tumour which he had removed a week later (22nd Nov). The biopsy results came back the following week where we found out it was a GBM. The next step for him is having a mask made for the radio treatment and then start three weeks of this in the new year. I wish your wife all the luck in the world.
It’s such a horrible disease and I cannot believe the speed of how things have developed.
@tweenster - It sounds like your wife is at a similar stage to my Dad. He was diagnosed with a 7cm tumour which he had removed a week later (22nd Nov). The biopsy results came back the following week where we found out it was a GBM. The next step for him is having a mask made for the radio treatment and then start three weeks of this in the new year. I wish your wife all the luck in the world.
It’s such a horrible disease and I cannot believe the speed of how things have developed.
Dids444 said:
@King Arthur I'm really sorry to hear about your brother. I was hoping to hear that the diet change was helping him and something I could recommend to my dad. My deepest condolences to you and your family
@tweenster - It sounds like your wife is at a similar stage to my Dad. He was diagnosed with a 7cm tumour which he had removed a week later (22nd Nov). The biopsy results came back the following week where we found out it was a GBM. The next step for him is having a mask made for the radio treatment and then start three weeks of this in the new year. I wish your wife all the luck in the world.
It’s such a horrible disease and I cannot believe the speed of how things have developed.
I echo the sentiments of the above post, King Arthur I’m sorry to read of your brother. @tweenster - It sounds like your wife is at a similar stage to my Dad. He was diagnosed with a 7cm tumour which he had removed a week later (22nd Nov). The biopsy results came back the following week where we found out it was a GBM. The next step for him is having a mask made for the radio treatment and then start three weeks of this in the new year. I wish your wife all the luck in the world.
It’s such a horrible disease and I cannot believe the speed of how things have developed.
Tweenster and Dids - good luck to you both and your respective scenarios. It’s a truly horrible thing, my dad died from this some 13 years ago at 57. If there’s anything I can help anyone with or simply just an ear to vent stuff on frankly please do shout, I remember just how hard the journey was.
Edited by guillemot on Saturday 7th December 22:33
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