National Brain Tumor Society is the largest nonprofit dedicated to the brain tumor community in the United States. The Organization is uniquely positioned to leverage its collective resources and knowledge to deliver the greatest impact to the brain tumor community. With catalytic funding models, intensive research collaborations, and a focused public policy agenda, the Organization is driving change at critical points within the drug discovery and development landscape. Herein you will find resource and information videos about our research, programs, and the people who matter most - our brain tumor community.
Hello, thank you for reaching out and for your question. While Goals for Glio is currently an East Coast event, we would love for anyone interested to create their own version of Goals for Glio on the West Coast or wherever they are located! You can also visit our website to view our current and upcoming events: braintumor.org/events/
Well I had a GBM in 1991 and I’m still alive ! 😊 Regrettably no longer walking very far ( balance and memory issues have presented themselves ). But there’s DEFINITELY HOPE !!!
I'm just shy of 16 months survival without phase 1 of treatment. Couldn't have surgery or radiation due to my tumor being diffuse. Fills in all the nooks in the right hemisphere of my brain. Surgery and radiation would have been detrimental to my quality of life. Jumped right into temezolomide (oral chemo) and Avastin infusions. Taking anti- seizure meds everyday. Wearing Optune since Oct 23. Feeling good now but this could be as unpredictable as being diagnosed. Stay strong all my GBM warriors!!
Praying for all the families affected by GBM. 🙏🏼 I was diagnosed with grade IV a couple of months ago. In third week of radiotherapy and chemo now. Doctors have told me it will come back more aggressively after treatment. I wanted to try adding Ivermectin or Mebendazole to my treatments but I am not permitted to here in Australia as Doctors are not allowed to go beyond NHS protocols of radiation and chemo, even though they don’t cure it. I am so thankful for my beautiful husband, family and friends and for their prayers. ❤🙏🏼✝
My life-partner of now 17 years, overnight suspected stroke, rushed off to EC, CT and MRI brain tumor, the size of a fist, in his occipital lobe; managed to rush him off to another city, for emergency neurosurgery while busy coning, arrived in time, mannitol and steroids, in theatre at 4pm, out at 830pm. Histology back 3 days later - glioblastoma multiforme. September 22nd 2021. It was a Wednesday. Standard care. And even with another 2 craniotomies with tumor excisions later, and failed temozolomide and Avastin, with growing tumor in his parietal lobe, and now on palliative chemo, he lives and longs to live life. 2 years and 10 months. Thanks to our wonderful oncologist and neurosurgeon, but more importantly, thanks for such a positive extraordinary man in my life. Keep fighting and living life, to those with disease and also to the carers.
I still wonder : Had a GBM when I graduated high school in 1991 @18 . . . I’m 51 now and actually finally retired . . My note is that thankfully radiation therapy has been improved . . Radiation therapy caused me to go into comatose hibernation each winter for my twenties, but I’m alive and living in my own little apartment like the average person . 😊 . . Never give up hope because God’s got your back 👍
Hello, thank you for reaching out and for your question. You can get more details and learn more about GBM Agile on our website here: braintumor.org/research/clinical-trials/gbm-agile/
My mom has Stage 4 Breast Cancer that metastasized to her lymph nodes, liver, and bones. It was maintained with chemo every month for a year. Then early this year doctors confirmed it also spread to her brain. She had 5 radiation treatments in one week due to the severity of little tumors. After the 4th treatment she had a panic attack or silent seizure and things just continued to go down hill from there. Her mobility slowly shut down, had hospital visits because she stopped having bowel movements. Hospital had her bedridden without actual food for weeks only IV liquids. Causing major delay for her chemo and radiation treatments. Once we took her out of hospital, her chemo docs said nothing could be done now, put her on hospice. By then she could only move her face and neck. Now her jaw is locked and docs say food or iv liquids wont elongate her life. I dont want her to feel she’s starving or feel pain especially now. I wouldn’t wish this evil on my worst enemy. My mom didn’t deserve this hard life. Ppl cancer caught late acts as a demonic plague on your body. And if treatments don’t cure it right away, or stabilizes it, it may speed up the downfall. whether chemo or surgery gets rid of the cancer or not. Please be aware that it can come back! And aggressively, or spread to the brain for months before your doctor even notices. Exercise and eat clean early on, get ride of stress. Cancer loves sugar and stagnate bodies. Many chemo treatments don’t target the brain so its missed. Advocate for yourself because for some doctors you are just more money in their pockets or a lost cause due to your stage of cancer.
Loved my time spent with our group in DC with NBTS. You two are certainly warriors for this cause. Thank you from the bottom of my heart in continuing to do so. :)
IF I WERE YOU I WOULDN'T DO IT, CK OUT JOE TIPPENS CANCER PROTOCOL FENBENDAZOLE, FENBENDAZOLE REDUCES AND KILLS CANCER CELLS WITH OUT ANY SIDE EFFECTS. JESUS LOVES YOU ❤
Fiancé was diagnosed on 3/24/24. Surgery was 4/6/23. Had recurrence 12/19/23. Second craniotomy 1/24/24. This disease takes your security , your patience, your future, and your soul. He’s still alive and fighting. But how much longer can we fight?
What a cruel disease. I feel for the loved ones and the patients who suffer. The doctor in the video seems really excellent, I love her passion and compassion for patients and their loved ones. I hope treatment for this disease improves soon.
My mother is a GBM grade -4 patient...she has identified in june,2023...she had done with the surgery and also completed her radiation...now she is continuing Temozolomide as her chemo medication.... please if there are some other treatments except these please please please help me
same here😢my husband got an operation last year April 13 2023 and diagnosed GBM.Treatment was radiation ang chemo…For the last 9months his tumor cameback this year Feb 10 2024😢doc said my husband need to admit 3days to the hospital for another drug…Im fear to death everyday im not ready and i dont want to lose him i love him and my children is 7 10 14yrs old..Hope god give mercy on us and give more years to live to those have diagnosed GBM and other cancer patients.🙏🙏
I have just started trying to find out about Voresidenib… I was recently diagnosed with Grade 4 GBM unmethylated. Just started radiotherapy and Temozolomide. Praying for all seeking help. 😰🙏🏼❤️ Also heard about something called GBM Agile, but I don’t know much…
Doctor, please, how do I participate in a trial version? I have breast cancer from Algeria. May God protect you. Help me. Our country is medically incapable. I am 42 years old. I beg you to help me.
My husband was diagnosed with GBM 2 months ago and is now undergoing radiation and chemo. Out of nowhere, our lives have changed forever, and we would love to be part of your clinical trials. We don't have much time but want to get on Prozac as soon as possible. We see a ray of hope where before, we had none. Please help us and thank you.
Hello, thank you for reaching out. We are sorry to hear about your husband's diagnosis and are here to support you and your family. You can access our clinical trials finder on our website here: trials.braintumor.org/ Additionally, we would like to share with you our support services page from our website, which has a list of valuable resources and support services that you may find helpful: braintumor.org/support-services/toolkit/patient-and-care-partner-resources/ If we can help you more, please do not hesitate to reach out, and we will be happy to help you further.
Nov 1, 2023 will be 6 years since my tumor made its presence known. I am grateful for amazing doctors and treatments, as well as the book, "Keto for Cancer" and herbal and nutritional support. The most helpful thing, though, was the advice to enjoy my life!
Thank you for all that you have done to help. My husband was diagnosed 2 months ago and went through surgery 1 month ago and is ow going though radiation, and chemo, and I am so lost and afraid. He has been my life for almost 40 years and I don't know how I am going to deal with this horrible trajedy.
Thank you for reaching out, we are sorry to hear about your husband and are here to support you and your family. If you have not had a chance yet, please visit our website for a list of resources and support services that you may find helpful: braintumor.org/support-services/toolkit/patient-and-care-partner-resources/ Additionally, we also offer a Patient Navigator team, which can be reached via email at patientnavigator@braintumor.org. You can also learn more about our Patient Navigator team on our website here: braintumor.org/support-services/personalized-support/ If you have any questions about the resources that we shared above or if we can be of additional assistance, please do not hesitate to reach out and we will be more than happy to help and connect you with our team.
Hello, thank you for reaching out, there are a number of databases that store research information on pediatric brain tumors. For example, there is the National Cancer Institute-funded Childhood Cancer Data Initiative (CCDI). CCDI has a data hub, and there is information on how to contact them and ask questions on their website: ccdi.cancer.gov/home
I am a Giloblastoma surviver and I am in my 18 th month and I am doing really good. I did six weeks of radiation and chemo treatments and then I started optune cap and then we did 25 treatments more of radiation and I am doing chemo every 3 weeks and I am doing really good. I am not taking any medication at all for seizures or swelling and my last M R I was the best one we have had. I thank the Lord every day for another day and I know that the Lord is with me all the time. It is not about me but it's about what the Lord is doing for me. I haven't had one head ake or gotten sick because of chemo. Not one time have I been sick. Thank you Lord.
@@ingevonschneider5100just because someone doesn't survive doesn't mean she won't survive she will beat this and I hope people like u get their lesson ...who r so negative and insensitive to others ....also I have seen people survive shame on u man
This video is very informative. Dr Nduom did my wife surgery in August 2022. Thanks to him, she's doing well and free of the left side meningioma. He's an excellent surgeon and I would highly recommend him
I have an acoustic neuroma. It's about 1.7 cm. I recently had stereotactic radiosurgery which is a type of radiation for acoustic neuroma. I had that in May of this year. It was only one session and it only lasted about 6 minutes. I get an MRI done in August and then I see the doctor for a follow-up the next week. So I can't tell you whether or not it's been successful or not because there has been no measurement as yet and I'm still dealing with the side effects.
