
Glioblastoma, the brain cancer that Sen. John McCain has, is invariably — and accurately — described as aggressive and as having a poor prognosis: Not even Sen. Edward Kennedy or Beau Biden, with access to the best care and most cutting-edge therapies in the world, beat it. Recent advances, however, have persuaded some scientists that effective treatments are on the horizon — and some might even help McCain live longer than earlier patients did.
“We’ve learned a tremendous amount about the biology of this cancer,” said Dr. David Reardon, director of neuro-oncology at Boston’s Dana-Farber Cancer Institute. That includes understanding “the mutations and other abnormalities that give tumors an advantage, how they adapt and become resistant [to chemotherapy], and how to get treatments across the blood-brain barrier” that is notorious for keeping out drugs.
As a result, he said, “there are an increasing number of drugs that are making their way toward the clinic.”
Hi. I now run my group and takes a lot of time. I do realize that folks who come to the page are in crisis. But I just don’t have the extra time to come back here because my group has gotten so big. So feel free to visit my GBM fb group where I spend most of my free time.
Good luck in your battle against GBM.
Bev Leesman
Hi. If you want more information about my husband’s 7.5 year battle with GBM, please go to my private FB page, “A Guide to Surviving GBM”. We now have over 1, 500 members who focus on the science and facts about GBM. Running my group takes a lot of time. I do realize that folks who come to the page are in crisis, too. But I just don’t have the extra time to come back here because my group has gotten so big. So feel free to visit my GBM group where I spend most of my free time.
Good luck in your battle against GBM.
Bev Leesman
I was just concluded with this.
Is there anything that has come about that can help this horrible situation.
I am in Royal Oak, MI close to Detroit. I own a business. I have the resources to look at other possibilities that have some success. Pleas let me know.
Hello, please let me know of your resources …. “other possibilities that have some success”. Thank you so much
My dad is about the same age and had a second surgery to remove the tumor. He had excellent improvement in his ability to speak and overall felt/seemed much more normal. This was after it grew back after a first surgery and temodar and radiation.
My mom who is 63 was diagnosed in April 2018 with grade IV GBM. She has completed her 6 weeks radiation as well as 5 rounds of temodar. She NOW has the option (since swelling and tumor size have dramatically reduced) to have the tumor removed. Has ANYONE or does anyone know of anything stating that removing the tumor at this point has any benefit? I know getting it out is of course best. But stopping her Avastin treatment as well as skipping a month of chemo is needed for Duke University to remove her tumor. Is it worth it to remove tumor after start of treatments? I am desperate of answers to this question. I have googled it endlessly with nothing found. Thank you
If you are searching for other options for treatment of GBM’s, there are numerous groups on Facebook who re-post on-line articles about new, cutting-edge from medical journals from all over the world. Do searches for: long term survivors; GBM caretakers/spouses; guides to surviving GBM’s; glioblastoma survival; brain cancer, etc. Good luck.
The article ignores the game changing advances in fighting this disease and fails to give readers an accurate picture of current cutting-edge technology. GBM patients and their families need know about DNA analysis of tumors that help taylor treatments to that patient and increase survivability.
My husband has survived 5.7 years with this cancer. A vast majority of patients die within 6 months of diagnosis while some will survive 14 months. Current survival rates for 2 years has increased to 10% because of this new treatments/technologies.
In Dec. 2012, my husband had a total gross resection (removing all parts of the visible tumor) of a glioblastoma multiforme (GBM) Stage IV brain tumor measuring 2.5 cm. Our surgeon at MD Anderson in Houston, TX, called it small. It was the size of a walnut and located in the left temporal lobe. It was followed by 6 weeks of radiation and 6 months of Temodar (chemo). 4 yrs. 11 months later, a new lesion appeared in the hippocampus and amygdala, and he was treated with Avastin (an infusion), gleostine (a chemo), and we added cannabinoids (THC & CBD oils) to help with the side effects, seizures and fight GBM glial cancer cells. (Normal survival rate of a recurrent GBM is 3.5 to 4.5 months.)
By April 23, 2018, those enhancements were completely gone but the new MRI at MD Anderson showed that a suspicious area had transformed into a new active GBM measuring .8 cm. He finished another round of Avastin on June 28th and will finish his radiation on July 3, 2018.
What’s the difference?
Why is he surviving so long?
How could he beat GBM twice and be on track to beat it a 3rd time?
DNA analysis of his tumor showed that he had an MGM methylated mutation (62% highly methylated) that is a genetic marker for long term survivability. Translation: the mutation sets up a perfect storm where cancer treatments kill/subdue GBM glial cells. The surgery, temodar, radiation (twice), gleostine and avastin all worked to get rid of his visible enhancements.
When the GBM comes back a 4th time (and it will, it always comes back), Phase III trials of Immunotherapies using the cold virus & the patients own stem cells (MD Anderson); poliovirus (Duke University) and others utilizing HIV, oncolytic virus, virotherapy, herpes simplex, adenovirus, measles, Newcastle disease virus, reovirus, vesicular stomatitis virus, parvovirus, vaccinia virus, myxoma virus, and others will be available as Phase III clinical trials or approved by the FDA.
Sharon Begley neglected to mention these new approaches to helping patients survive GBM. She did a good job of taking medical jargon and translating it into everyday English. Her analysis of technologies that we were not aware of was valuable and eye-opening. But ignoring the DNA analysis of GBM’s and its effect on research to enhance long-term survivability, is an oversite.
People reading this article are searching for answers to a deadly and fast growing cancer that is engulfed in so much technical jargon, that it is hard to make the right choice for treatment. Making the right decision for yourself or your loved one is just as important as actually taking the treatment.
My dear Lady thank you for the information you posted my Son was diagnosed last October with glioblastoma he had surgery radiation and chemo temedore but last week and MRI show a regrow and he is having surgery again tomorrow morning I am so worry after they plan on targeted treatment with 3 diferent drugs one of them is Opdivo but I’m not sure that’s the way I believe there are better options I have been some research my self but its so hard there’s so much information it’s confusing at times I like what you and your Husband are doing and will show my Son your post if you know anything more on this terrible decease please let me know I don’t want to loose my Baby . Thank you again
Cel, I am so sorry to hear that your child is battling this disease.
And yes, the medical jargon is overwhelming for this GBM brain cancer. Paul and I have been studying and reading about this disease for almost six years now (if you count the time prior to the surgery at MD Anderson (Houston, TX). He is a physicist and I’m a tech writer so we have researched 100’s of articles about GBM.
You are absolutely correct. It is so hard to know what to research because it seems like each GBM is unique with it’s own set of problems. So not all articles you find on the web are relevant to your GBM.
Look on Facebook. There are groups there that post constantly about current research on GBM. You can find a site that you like and ask basic questions. You’ll get answers right away from most of them. Good luck.
Another huge is the location. Procedures like the polio trial require access to the tumor. Sadly not an option for us. Leads to any promising trials that dont involve surgical access would be greatly appreciated.
Hi Quicksilver,
I know these posts are months old, but I am hoping you see my question. I am trying to save my Mom. Can you tell me the dosing of CBD/THC that you were giving and the frequency a day? Where you using any other supplements or doing absolutely anything besides the medical treatment, even if it is dietary, please share. Also, can you give me the name of a trusted Dr at MD Anderson? Thanks
Respected madam,
My name is Dilip from india, my father is suffering from gliblastoma grade 4 from Jan 2014. Now in December 2017 he had 2nd surgery -followed by radiation and chemo therapy. Now may 2018 he has bit dipleted & feeling hard to walk .
Can you please suggest – what can we do best from our side, what are available treatment for further?
Please suggest me madam.
Thank you
Yours faithfully
Dilip
If you are searching for other options for treatment of GBM’s, there are numerous groups on Facebook who re-post on-line articles about new, cutting-edge from medical journals from all over the world. Do searches for: long term survivors; GBM caretakers/spouses; guides to surviving GBM’s; glioblastoma survival; brain cancer, etc. Good luck.
I searched many sites & posts on face book too, Recently i got to knew about new invasive way for treatment of GBH-Grade 4 type by: SPMF treatment (@ sbf health care) i.e sequentially programmed magnetic field therapy.
Please, Can any one suggest about this treatment usefulness, whether will it be useful -how trust worthy will it be.
So basically, the most promising approach might prolong life from 3 months to 8 months?
Yes, if you use those treatments and ignore the explosion of new approaches and treatments designed to kick GBM’s to the curb.
Hi, my mom just had and MRI done on Wednesday they said it looks to be glioblastoma… I’m scared and worried because we are waiting to see a neurosurgeon and oncologist I need help and answers..