63 yr old male no symptoms and I woke up in hospital confused where I was. Turns out I was brought in unconscious and they did an emergency craniotomy and MRI and found I had a stage IV glioblastoma. Three weeks later, I’ve had a second craniotomy and resection and I am preparing my treatment plan which will be reasonably standard. Thought I was going to get proton therapy but insurance would not cover this therapy even at a reduced cost in a trial, so it’s IMRT & Temozolomide. Thanks 4 putting out this webinar even though it’s now 7 years old, it’s still pretty relevant.
I have been fighting with - for my Son for almost 22 years now. He has Brain Cancer tumors. But not this type. Wish we could find a cure for all Cancers. Best wishes to everyone fighting. Including the families. Be encouraged that you are not alone- even when the rest of the world forgets about you.
Off the bat, I am not a licensed healthcare professional yet but I’m working on that, so I’m not completely ignorant to medicine. I have also had the honor and horror of being primary care giver for my mom when she was diagnosed. Unfortunately, she was given a dual pathology diagnosis of GBM and Oligodendroglioma. From her first symptom to her last breath was 8 months to the day. Everyone who took part in her care agreed that her tumors were caught in an unusually early stage. I will take part credit for that due to the fact I hold a black belt in ‘nagging from hell’. Her symptom, a quick, unusual headache that was immediately followed with a “…strong desire to laugh maniacally”. The first time she was at work, the second time was as she was driving, I was passenger and my two daughters in the backseat. It was the oddest, and quickest symptom I’d ever seen. From start to finish was maybe 30 seconds. But in that 30 seconds her face seemed to have lost all the color and her facial expression was pure blank, then confused, then scared. She had a history of DVTs and my nagging at such a bitchy level was out of fear that all or part of a clot had made its way to her brain. This incident earned me the nickname “Nurse Ratched” by my parents because I wasn’t going to stop nagging until you kill me or go see a doctor immediately (not an appointment two weeks away). Sarcasm aside, it was a life changing decision. A CT scan was performed by the ER where they automatically discovered several “lesions”. From walking in the ER, she was in the hospital for almost 2 weeks. Eventually she was under the care of neuro-oncologists and their team at Emory University’s Winship Cancer Center. Adding this to a list of preexisting conditions meant she had almost 20 doctors of various specialities. She had surgery, focused radiation, temodar and a different chemo drug that wasn’t completed as it caused her blood counts to go nuts. I have a handful of things I’d recommend to anyone in healthcare who has a patient with this level cancer. 1. When patient is put on Temodar, the family or PCG needs to be told multiple times that there are dangers associated with handling this drug. 2. I understand healthcare providers being hesitant to take hope away when they discuss prognosis. That has to change! This was one of the worst aspects other than the disease itself. I do my research, I knew things about this disease that doctors didn’t know. I don’t play around with the health of my family. So I knew the aggressive nature. I knew the lethality of these cancers. So my mom, my dad and myself would be in for various appointments and no one would be honest and up front. Initially, that was the mindset period. Then I started getting pushy and I’d have my dad take my mom out of the room and fired questions at the doctors who then would verify the reality. The problem came in when doctors wouldn’t be that open in front of my parents. So when a doctor says “well we have patients who have lived 20 years after diagnosis”, my parents didn’t want to hear the reality from me. That became an issue when it came time for my parents to update will, update living wills, power of attorney for medical decisions and the introduction of hospice care. I understand it’s a hard place to be in, to have to be honest with patients. But being honest does not equate to being cruel. You can be compassionate, you can be honest and you can let families know that there may come a time where a choice has to be made between a patient’s quality of life versus quantity of life. It’s the very least a patient and their family deserves!
@@AmericanBrainTumorAssociation I still have my grey bracelet/ band from almost 22 years ago. Another Brain Tumor Mother gave me hers. ( The bracelet looks pretty worn out -- but I still cherish it. ) Her Son is still alive also ! We have been through many horrific battles and yet we continue on. We have been to many hospitals- including Saint Judes. Thank you for helping educate people about Brain Tumors.
Keep fighting, buy yourself time. Cancer treatments are coming down the pike so fast, there could easily be a cure for you soon. Don’t forget to look into targeted therapies, and immunotherapies for your cancer, as well chemotherapies. If they are not available yet for your type, they will be soon.
Speak to your doctor and don't listen to random strangers on the Internet when it comes to something as serious as Glioblastoma. Although it can't, "pass to children," if a patient is taking the commonly prescribed Glioblastoma chemotherapy drug Temodar (also known as Temozolomide) you should NOT be attempting to have children. That's a very hazardous medication.
5-10% of primary GBM cases show evidence for some hereditary genetic components playing a role in acquisition of the disease, with a 2fold increase in risk within these 5-10% of cases
63 yr old male no symptoms and I woke up in hospital confused where I was. Turns out I was brought in unconscious and they did an emergency craniotomy and MRI and found I had a stage IV glioblastoma. Three weeks later, I’ve had a second craniotomy and resection and I am preparing my treatment plan which will be reasonably standard. Thought I was going to get proton therapy but insurance would not cover this therapy even at a reduced cost in a trial, so it’s IMRT & Temozolomide. Thanks 4 putting out this webinar even though it’s now 7 years old, it’s still pretty relevant.
How is ur health now sir ?
I have been fighting with - for my Son for almost 22 years now. He has Brain Cancer tumors. But not this type. Wish we could find a cure for all Cancers. Best wishes to everyone fighting. Including the families. Be encouraged that you are not alone- even when the rest of the world forgets about you.
Appreciate your thoughts, and keep on fighting!
@@AmericanBrainTumorAssociation Thank you! And thank you for the support !
th-cam.com/video/ZOX2eg1nfAs/w-d-xo.html
My husband died from glioblastoma 18 years ago. 4 months from diagnosis to death. Seems to me no more is known today than back then! 😢
Mine is the size of a pea non malignant im not worried about it the neurosurgeon said it's nothing to worry about
Off the bat, I am not a licensed healthcare professional yet but I’m working on that, so I’m not completely ignorant to medicine. I have also had the honor and horror of being primary care giver for my mom when she was diagnosed. Unfortunately, she was given a dual pathology diagnosis of GBM and Oligodendroglioma. From her first symptom to her last breath was 8 months to the day.
Everyone who took part in her care agreed that her tumors were caught in an unusually early stage. I will take part credit for that due to the fact I hold a black belt in ‘nagging from hell’. Her symptom, a quick, unusual headache that was immediately followed with a “…strong desire to laugh maniacally”. The first time she was at work, the second time was as she was driving, I was passenger and my two daughters in the backseat. It was the oddest, and quickest symptom I’d ever seen. From start to finish was maybe 30 seconds. But in that 30 seconds her face seemed to have lost all the color and her facial expression was pure blank, then confused, then scared.
She had a history of DVTs and my nagging at such a bitchy level was out of fear that all or part of a clot had made its way to her brain. This incident earned me the nickname “Nurse Ratched” by my parents because I wasn’t going to stop nagging until you kill me or go see a doctor immediately (not an appointment two weeks away).
Sarcasm aside, it was a life changing decision. A CT scan was performed by the ER where they automatically discovered several “lesions”. From walking in the ER, she was in the hospital for almost 2 weeks.
Eventually she was under the care of neuro-oncologists and their team at Emory University’s Winship Cancer Center.
Adding this to a list of preexisting conditions meant she had almost 20 doctors of various specialities. She had surgery, focused radiation, temodar and a different chemo drug that wasn’t completed as it caused her blood counts to go nuts.
I have a handful of things I’d recommend to anyone in healthcare who has a patient with this level cancer.
1. When patient is put on Temodar, the family or PCG needs to be told multiple times that there are dangers associated with handling this drug.
2. I understand healthcare providers being hesitant to take hope away when they discuss prognosis. That has to change! This was one of the worst aspects other than the disease itself. I do my research, I knew things about this disease that doctors didn’t know. I don’t play around with the health of my family. So I knew the aggressive nature. I knew the lethality of these cancers. So my mom, my dad and myself would be in for various appointments and no one would be honest and up front. Initially, that was the mindset period. Then I started getting pushy and I’d have my dad take my mom out of the room and fired questions at the doctors who then would verify the reality. The problem came in when doctors wouldn’t be that open in front of my parents. So when a doctor says “well we have patients who have lived 20 years after diagnosis”, my parents didn’t want to hear the reality from me. That became an issue when it came time for my parents to update will, update living wills, power of attorney for medical decisions and the introduction of hospice care.
I understand it’s a hard place to be in, to have to be honest with patients. But being honest does not equate to being cruel. You can be compassionate, you can be honest and you can let families know that there may come a time where a choice has to be made between a patient’s quality of life versus quantity of life. It’s the very least a patient and their family deserves!
Thank you for sharing your experience with your mom. These are invaluable lessons learned.
I agree. My Aunt died from glioblastoma. Her family dr. was honest and direct.
May is brain tumor awareness month. Go Grey in May.
Go Grey!
@@AmericanBrainTumorAssociation I still have my grey bracelet/ band from almost 22 years ago. Another Brain Tumor Mother gave me hers. ( The bracelet looks pretty worn out -- but I still cherish it. )
Her Son is still alive also ! We have been through many horrific battles and yet we continue on.
We have been to many hospitals- including Saint Judes.
Thank you for helping educate people about Brain Tumors.
ha e meningioma ii. on chemo right now, fighting for 15 years
Keep fighting! Hugs from others who know your struggle . Lean on God when your strength and support group are absent.
Keep on fighting!
th-cam.com/video/ZOX2eg1nfAs/w-d-xo.html
Keep fighting, buy yourself time. Cancer treatments are coming down the pike so fast, there could easily be a cure for you soon. Don’t forget to look into targeted therapies, and immunotherapies for your cancer, as well chemotherapies. If they are not available yet for your type, they will be soon.
pradaxa (dabigatran) is a direct thrombin inhibitor not a factor Xa
They won’t do any surgery on my sister. (Kaiser) None. Why? She doesn’t even have any symptoms other than one eye.
Get out of Kaiser, I am after 1 year of H3G34 Mutation glioma tumor in my daughter's brain.
@@m.davenport2511 The more mutations, the vulnerable the tumor is! So counterintuitive. Hang in there.
my queston is that can brain tumour patients stage 4 can marry , is there any chance of spreading in children of patient.
No, you cannot pass to children.
Speak to your doctor and don't listen to random strangers on the Internet when it comes to something as serious as Glioblastoma. Although it can't, "pass to children," if a patient is taking the commonly prescribed Glioblastoma chemotherapy drug Temodar (also known as Temozolomide) you should NOT be attempting to have children. That's a very hazardous medication.
Agreed. Temodar fucks your zygotes up (male and female) and can lead to all sorts of issues with the fetus
Some tumors have genetic components, some don’t at all.
5-10% of primary GBM cases show evidence for some hereditary genetic components playing a role in acquisition of the disease, with a 2fold increase in risk within these 5-10% of cases
Cellphone, maybe?