What are the best Glioblastoma fighting charities to give to?

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What are the best Glioblastoma fighting charities to give to?

by bjoh249 on Tue Jun 20, 2017 04:43 PM

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As I have already written in a separate post on this forum, my father has recently been diagnosed with Glioblastoma Multiforme stage IV. I was wondering if anyone has any information from some reputable national charities doing research specifically targeting this disease. I have seen Blast Glioblastoma (but it is based in Ohio and they seem to be conducting research only for their particular region). There is also the American Brain Tumor Society (but I don't know how much research they do targeting GBM specifically). There is also the Glioblastoma Foundation in Durham, NC but I don't know their reputation and Charity Navigator has them as unrated. I want to prolong my dad's life long enough to find a cure, or something that will continue prolonging his life for many more years to come. He is 66 years old and that is a problem for this disease, but this day in age there should be something.

RE: What are the best Glioblastoma fighting charities to give to?

by nonnaof8 on Wed Jun 21, 2017 01:31 AM

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Unfortunately, there aren't many funding sources dedicated to research for GBMs.  Because there are only about 12,000 cases a year and most are diagnosed late stage, GBMs don't get the attention other cancers like breast, colon, ovarian and prostate get.  I'm not saying these cancers don't deserve the attention but GBMs are a nasty bastard of a cancer.  My husband had an MRI on 7 Dec 2014, suffered a seizure on Dec 8 and died on 14 May 2015.  When they diaagnosed his tumor three weeks after his seizure as a glio, they gave him six months to a year.  These tumors are incurable at this point.  I would love to have a charity that would fund research into finding a way to do early diagnois and find a cure.

RE: What are the best Glioblastoma fighting charities to give to?

by bjoh249 on Wed Jun 21, 2017 02:26 AM

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On Jun 21, 2017 1:31 AM nonnaof8 wrote:

Unfortunately, there aren't many funding sources dedicated to research for GBMs.  Because there are only about 12,000 cases a year and most are diagnosed late stage, GBMs don't get the attention other cancers like breast, colon, ovarian and prostate get.  I'm not saying these cancers don't deserve the attention but GBMs are a nasty bastard of a cancer.  My husband had an MRI on 7 Dec 2014, suffered a seizure on Dec 8 and died on 14 May 2015.  When they diaagnosed his tumor three weeks after his seizure as a glio, they gave him six months to a year.  These tumors are incurable at this point.  I would love to have a charity that would fund research into finding a way to do early diagnois and find a cure.

Hi, were they able to remove your husband's tumor at first or was it inoperable and he died from the same tumor?

RE: What are the best Glioblastoma fighting charities to give to?

by nonnaof8 on Sat Jun 24, 2017 02:57 AM

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His was inoperable.  It would have destroyed too much brain tissue to try to remove it.  You might check into the cap they are using now which delivers radiation to the tumor 16-20 hrs a day.  Most doctors recommend chemotherapy also but I don't have a lot of faith in because of the blood-brain barrier.  Most of the people I know who have also tried the chemo couldn't tolerate the pills.  My husband's blood count dropped severely on the second dose.  Avastin is an intraveneous drug with which one person I know had some good results.  If you are wondering about why I am talking about other people I know, I live in a small rural area of about 14,000 people.  In less than three years, we have had at least seven people with glioblastomas.  Considering there are only 12,000 cases a year in the US, this seems like a high percentage in a small community. 

I wish you the best in the journey with your father.  Spend as much time as possible with him and talk a lot.  Please feel free to contact me anytime.  I am currently working on trying to get my state government involved in looking at causes and statistics. 

RE: What are the best Glioblastoma fighting charities to give to?

by drdtc on Fri Jun 30, 2017 12:47 PM

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American Brain Tumor Association: abta.org National Brain Tumor Society: braintumor.org

RE: What are the best Glioblastoma fighting charities to give to?

by ottoh on Mon Jul 03, 2017 01:24 AM

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Sorry to hear about your father, but do not give up on this! My wife is 60 and she was diagnosed with stage 4 in Dec. 2015. Had an emergency op and given 6 months to live. 6 months latter, it had returned and was the size of a baseball. We went to Duke U for polio virus trials, but it was too large. We did experiance a lot of love and many people who were volenteering at the brain center and peripherally. Seems like a great place to donate. We endded up at MD Anderson enrolled in a gentically modified T cell trial and she has clean MRI's ever since. I would suggest you do some research on clinical trials and get him enrolled asap. We also used CBD's and THC which in other clinical trials are showing promise to help deliver the Temodor thru the blood brain barrier and to help kill the cancer it's self. I just want you to know there are people who do survive longer, even if it is for only a few years. Keep the faith and sending the love your way! Aloha

RE: What are the best Glioblastoma fighting charities to give to?

by bjoh249 on Mon Jul 03, 2017 11:19 AM

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On Jul 03, 2017 1:24 AM ottoh wrote:

Sorry to hear about your father, but do not give up on this! My wife is 60 and she was diagnosed with stage 4 in Dec. 2015. Had an emergency op and given 6 months to live. 6 months latter, it had returned and was the size of a baseball. We went to Duke U for polio virus trials, but it was too large. We did experiance a lot of love and many people who were volenteering at the brain center and peripherally. Seems like a great place to donate. We endded up at MD Anderson enrolled in a gentically modified T cell trial and she has clean MRI's ever since. I would suggest you do some research on clinical trials and get him enrolled asap. We also used CBD's and THC which in other clinical trials are showing promise to help deliver the Temodor thru the blood brain barrier and to help kill the cancer it's self. I just want you to know there are people who do survive longer, even if it is for only a few years. Keep the faith and sending the love your way! Aloha

The radiation doctor said that my dad isn't eligible for trials because the cancer was a double. I still wonder if I should still check them out. I would like to believe that this is one doctor's opinion.

RE: What are the best Glioblastoma fighting charities to give to?

by ottoh on Mon Jul 03, 2017 02:37 PM

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 I don't know what your doctor means " it's a double'"   but here is a link tosomeof the clinical trials there are. https://www.cancer.gov/about-cancer/treatment/clinical-trial are more and there are many. Do some research, get second opinions. Not all doctors were A students, and some will help you more than others. Question everything they say and find things out on your own. We found some just follow the standard protocol. THOSE are the ones you need another opinion from. Call MD Anderson and Dke University and talk to them. Best of luck on your journey. 

RE: What are the best Glioblastoma fighting charities to give to?

by bjoh249 on Mon Jul 03, 2017 04:05 PM

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On Jul 03, 2017 2:37 PM ottoh wrote:

 I don't know what your doctor means " it's a double'"   but here is a link tosomeof the clinical trials there are. https://www.cancer.gov/about-cancer/treatment/clinical-trial s/search/results?protocolsearchid=6205688 there"" target="_blank" rel="nofollow">https://www.cancer.gov/about-cancer/treatment/clinical-trial target="_blank" rel="nofollow">https://www.cancer.gov/about-cancer/treatment/clinical-trial are more and there are many. Do some research, get second opinions. Not all doctors were A students, and some will help you more than others. Question everything they say and find things out on your own. We found some just follow the standard protocol. THOSE are the ones you need another opinion from. Call MD Anderson and Dke University and talk to them. Best of luck on your journey. 

I meant that it was a double cancer, two of them in the same spot on the left lobe. That was the reason given for not being eligible for trials. I do believe we should get a second opinion and thank you so much for the info.

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