Dad has glioblastoma stage 4

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Dad has glioblastoma stage 4

by bjoh249 on Tue Jun 13, 2017 09:32 PM

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My dad is 66 and was recently diagnosed with glioblastoma stage 4. They were able to remove his tumor but they say it grows back aggressively and quickly. He is in rehab right now and we hope he will be back home within the week before he begins chemo. We are hoping for a year left with him. No doctor has given him a set time to live but my mom tells me that no one has survived this disease and his age will mean he won't have very much time with me. I am trying to do my part as a son to help. The doctor we talked to at the clinic where he will be having his chemo said there were no clinical trials for him because of where the cancer was located and the fact that there were two of them side by side. If anyone can give me any information that might help him beat the odds that would be great. Any new treatments, anything. I could also use some inspirational survivor stores from people his age who may have beaten the disease, or lived longer than a year and was able to get back to normal in the mean time. The brain cancer site for people in his category and age range were mostly a bunch of downers from the children of parents who died quickly from the disease with a couple of inspirational stories thrown in. The sad stories on the site were mostly from the 2010-2012 year range so maybe something new has come along since then for this disease and people his age.

RE: Dad has glioblastoma stage 4

by Dodgerblue on Wed Jun 14, 2017 01:40 PM

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Many people survive longer than a year!  I know a GBM survivor that is 11 years out and another on this site is a 20 year survivor.  No one's path is pre-determined, and everyone's journey is different when it comes to this disease.  Don't give up hope.

Dodger

RE: Dad has glioblastoma stage 4

by pennysc on Thu Jun 15, 2017 02:32 PM

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My brother lived three and a half years after being told he had six months. Please check into those trials. You never know. Best of luck.

RE: Dad has glioblastoma stage 4

by mikey1212 on Thu Jun 15, 2017 02:57 PM

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Duke University hospital.nci fast tracked therapy good luck

RE: Dad has glioblastoma stage 4

by alibro2003 on Thu Jun 15, 2017 03:27 PM

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On Jun 13, 2017 9:32 PM bjoh249 wrote:

My dad is 66 and was recently diagnosed with glioblastoma stage 4. They were able to remove his tumor but they say it grows back aggressively and quickly. He is in rehab right now and we hope he will be back home within the week before he begins chemo. We are hoping for a year left with him. No doctor has given him a set time to live but my mom tells me that no one has survived this disease and his age will mean he won't have very much time with me. I am trying to do my part as a son to help. The doctor we talked to at the clinic where he will be having his chemo said there were no clinical trials for him because of where the cancer was located and the fact that there were two of them side by side. If anyone can give me any information that might help him beat the odds that would be great. Any new treatments, anything. I could also use some inspirational survivor stores from people his age who may have beaten the disease, or lived longer than a year and was able to get back to normal in the mean time. The brain cancer site for people in his category and age range were mostly a bunch of downers from the children of parents who died quickly from the disease with a couple of inspirational stories thrown in. The sad stories on the site were mostly from the 2010-2012 year range so maybe something new has come along since then for this disease and people his age.

Hi,

My Dad was diagnosed with the same at aged 73. He had surgery to remove the tumour and radiotherapy and chemotherapy for 3 weeks followed by chemotherapy 5 days in every 28 for a year. Just over two years on he remains well. There is no sign of regrowth yet & he is fit, happy and healthy in every respect. He has had no treatment for the past six months other than herbal supplements which he takes in tincture / liquid form as he doesn't want to take any more pills. These are the supplements recommended by Ben Williams in his book Surviving Terminal Cancer, turmeric, green tea etc. I would recommend you read the book as he will give you hope, where many doctors will be telling you there isn't much. Don't give up hope & try to take one day at a time, there are people out there, your dad's age and older who have a good quality of life and are surviving much longer than the statistics suggest,

Best wishes to you, your dad & all your family,

Alison

RE: Dad has glioblastoma stage 4

by ottoh on Thu Jun 15, 2017 04:00 PM

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There is always hope! My wife had surgery for her first tumor Dec. of 2015. Grew back to the same size in 6 months. That was a little hard to take. Long story short, we went from the east coast to the west coast trying to get into clinical trials. Had the second surgrey at UCSF with Dr Burger with the ALA clinical trial. Excellent job. Enrolled in the CMV clinical trial at MD Anderson where they took her T-cell and genetically modified them to fight the genentics of the glio. All of her MRI's have been clear with no regrowth since Aug. 2016. We have met many people who have lived a long good life after having had glio. Do not depend on a couple of doctors opinions, go out and do your own research. I would call MD Anderson and talk to them, or Duke U and see if you can talk to Dr. Henery Freidman. We changed my wifes diet to all organic, have her on CBD and THC, ( which I think has helped her greatly) , and cut out all sugar with her drinking tea made from fresh tumeric and ginger. ( helps with inflamation) After the surgery, the THC and CBD's helped her with her appetite, going to sleep at night and I believe helped her to deal with her situation. There are ongoing clinical trials that show promise that the CBD and THC help Temador kill cancer. On the chemo, you might want to ask your dr. if your dad is MGMT metholated. If not, do some research on how effective Temador is to treat glio. Try to keep a good attitude and know there are more people than you think that are beating this. Good luck and God bless your dad! 

RE: Dad has glioblastoma stage 4

by mariab964 on Thu Jun 15, 2017 05:27 PM

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On Jun 15, 2017 4:00 PM ottoh wrote:

There is always hope! My wife had surgery for her first tumor Dec. of 2015. Grew back to the same size in 6 months. That was a little hard to take. Long story short, we went from the east coast to the west coast trying to get into clinical trials. Had the second surgrey at UCSF with Dr Burger with the ALA clinical trial. Excellent job. Enrolled in the CMV clinical trial at MD Anderson where they took her T-cell and genetically modified them to fight the genentics of the glio. All of her MRI's have been clear with no regrowth since Aug. 2016. We have met many people who have lived a long good life after having had glio. Do not depend on a couple of doctors opinions, go out and do your own research. I would call MD Anderson and talk to them, or Duke U and see if you can talk to Dr. Henery Freidman. We changed my wifes diet to all organic, have her on CBD and THC, ( which I think has helped her greatly) , and cut out all sugar with her drinking tea made from fresh tumeric and ginger. ( helps with inflamation) After the surgery, the THC and CBD's helped her with her appetite, going to sleep at night and I believe helped her to deal with her situation. There are ongoing clinical trials that show promise that the CBD and THC help Temador kill cancer. On the chemo, you might want to ask your dr. if your dad is MGMT metholated. If not, do some research on how effective Temador is to treat glio. Try to keep a good attitude and know there are more people than you think that are beating this. Good luck and God bless your dad! 

This is an inspiring story. I'd like to add that you should employ a nutritionist with extensive experience working with glioblastoma. Try this group, one of the best in the country: http://www.nutritional-solutions.net I know of several people who lived years beyond expectations by harnessing the power of food and herbs along with cutting edge allopathic treatment. Maria www.healingnutritionofsonoma.com

RE: Dad has glioblastoma stage 4

by bjoh249 on Fri Jun 16, 2017 08:20 PM

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On Jun 15, 2017 5:27 PM mariab964 wrote:

On Jun 15, 2017 4:00 PM ottoh wrote:

There is always hope! My wife had surgery for her first tumor Dec. of 2015. Grew back to the same size in 6 months. That was a little hard to take. Long story short, we went from the east coast to the west coast trying to get into clinical trials. Had the second surgrey at UCSF with Dr Burger with the ALA clinical trial. Excellent job. Enrolled in the CMV clinical trial at MD Anderson where they took her T-cell and genetically modified them to fight the genentics of the glio. All of her MRI's have been clear with no regrowth since Aug. 2016. We have met many people who have lived a long good life after having had glio. Do not depend on a couple of doctors opinions, go out and do your own research. I would call MD Anderson and talk to them, or Duke U and see if you can talk to Dr. Henery Freidman. We changed my wifes diet to all organic, have her on CBD and THC, ( which I think has helped her greatly) , and cut out all sugar with her drinking tea made from fresh tumeric and ginger. ( helps with inflamation) After the surgery, the THC and CBD's helped her with her appetite, going to sleep at night and I believe helped her to deal with her situation. There are ongoing clinical trials that show promise that the CBD and THC help Temador kill cancer. On the chemo, you might want to ask your dr. if your dad is MGMT metholated. If not, do some research on how effective Temador is to treat glio. Try to keep a good attitude and know there are more people than you think that are beating this. Good luck and God bless your dad! 

This is an inspiring story. I'd like to add that you should employ a nutritionist with extensive experience working with glioblastoma. Try this group, one of the best in the country: http://www.nutritional-solutions.net "" target="_blank" rel="nofollow">http://www.nutritional-solutions.net " target="_blank" rel="nofollow">http://www.nutritional-solutions.net I know of several people who lived years beyond expectations by harnessing the power of food and herbs along with cutting edge allopathic treatment. Maria www.healingnutritionofsonoma.com " target="_blank" rel="nofollow"> www.healingnutritionofsonoma.com " target="_blank" rel="nofollow"> www.healingnutritionofsonoma.com " target="_blank" rel="nofollow"> www.healingnutritionofsonoma.com

Hi, how old was your wife? My concern with my dad is his age. Thank you so for the help. I really need it. God bless you too.

RE: Dad has glioblastoma stage 4

by mikey1212 on Sun Jun 18, 2017 09:41 PM

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Roswell park in Buffalo n.y. also has a successful immunotherapy program for glioblastoma

RE: Dad has glioblastoma stage 4

by ottoh on Mon Jun 19, 2017 02:59 PM

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She is 60 and now that she's home, she's begaining to gain a little weight and exercising more!

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