He a rare case ,hopefully one day all will have a chance to survive. My brother had glioblastoma he survive only a week granted never knew when it started , he had multiple seizure went to er ,got diagnosed via cat/ MRI scans. We were told he wouldn’t survive a biopsy ,stay a couple of days in hospital then sent home on hospice . Lost my brother 4 days later.
What a lovely interview ❤ thank you for this! David is so kind 🙏 I reached out to him back in the day one ofbmy best friends was diagnosed with GBM. I lived a little bit longer than what the doctors predicted but sadly Brazil health system had so much negligence, he was also fighting the system besides GBM. Staying around people who fought together with him, made his last months be filled with love and courage. He never allowed negativity in, even on his last hours.
I am 52 and childhoood cancer survivor. I was diagnosed with Wilm’s tumor in 1977 at age of 6. I had a left nephrectomy with 2 years of chemotherapy and cobalt radiation. Lucky for me I had an 85% cure rate. I did great until 1997 I was discharged with Papillary thyroid cancer and had a total Thyroidectomy. It was a rough few years, but life became more normal. At this time I had been Oncology nurse for 3 years. In 2012 I relapsed with Thyroid cancer. I had a butterfly mass on my layreangeal nerve. I had 2 amazing surgeons. Life moves on and I was diagnosed with a Leomyosarcoma of the abdomen. My mass was near renal artery and was about 4x4 mass with clear margins. That was the most difficult Surgery I have had to go through. All my surgeons agree that Cobalt radiation had a lot to do with all my cancers. I am a slow healer to the abdomen. I have also been a nurse for 30 years. Being on both sides has humbled me. I thank God everyday for life I have been given. I am thinking about starting a podcast for long term pediatric patients that have survived and are looking for support as there have been many more challenges that we all have faced. I absolutely loved listening to this interview. I am writing a similar story. I would have no idea on how to start a podcast, but if you could reach out I would love that.
Has anyone ever told you that Cobalt Radiation can cause other cancer years later? I had Cobalt Radiation when I was a toddler for tumors in my trachea. Twenty five years later I had a thyroidectomy due to 4 precancerous tumors on my thyroid. I was told it was probably caused by the Cobalt Radiation. Three years ago I was treated for breast cancer and I was very nervous to have radiation again. It can be frightening.
@@darlenepietzak9847my spouse had childhood cancer and has developed cancer again 14 years later the oncologists are 99% sure it was from radiation she received as a child it’s devastating.,
Wow ... unbelievable interview 👏👏thank you for sharing...Positive attitude.. positive thoughts.. positive outcome...Good luck to you David & your fiance...lots of love and happiness and cute babies...🙏❤️🍀🤞🍀😊
Great interview David! Thank you David and the GBM Research Org. for doing such incredible work in the GBM community and research. Your story is very inspiring and it’s so awesome that it has reached so many people in need of hope, help and understanding. Really proud of you. ❤
Thank you and may the Lord bless you. 🙏🏼 I have recently been diagnosed with Grade IV unmethylated GBM at 67 years of age. Started Temozolomide and Radiotherapy this week. Trying to learn more about treatments. ❤️ 😰
What an incredible man and story. A dear friend of the family, Nancy, just passed away recently from a GBM. She was sick for a long time and was hesitant to go to the doctor and by the time they found out what was going on she was ready for hospice. So incredibly heartbreaking. I'm so happy to hear a GOOD story about a GBM survivor...there aren't very many good stories, many sad ones. Another inspirational young man is The Shape Game here on youtube! His name is William and I believe he is a 5+ year survivor that's had a great outlook and positive attitude throughout his journey Thank you David, I am so glad you are here ☀️
How does he get credited as the "longest GBM survivor in the US" at 20 years from diagnosis? There's someone who works at the neurosurgery clinic here in Cincinnati that's over 30 years from dx, and there are a few 30+ year survivors I've talked to online - not sure if they're all in the US but at least one of them is. There are hundreds of 20+ year GBM survivors in the US. It's obviously not the norm, but it's a solid chunk of people.
That’s great to hear! Perhaps you can get some of these 30+ year survivors you know to connect with the Glioblastoma Research Organization and share their stories.
They connect to the audio box which is also connected to the microphones! Helps us hear how loud we speak into the microphones and make sure there's no annoying background noise 😄
Lost my sister about 6 months ago. She lived 2 1/2 yrs with it. So sorry for your loss. I definitely believe in alternative protocols which my sister didn't do. Terrible disease.
Loosing my daughter in law slowly 2.5 years since her surgery, hoping for more time even though she isn’t the girl she once was, blind and confused she has 2 little girls who love her dearly.
Powerful story . Keep doing what your doing and all the best with your future marriage. Wonderful podcast.
He a rare case ,hopefully one day all will have a chance to survive. My brother had glioblastoma he survive only a week granted never knew when it started , he had multiple seizure went to er ,got diagnosed via cat/ MRI scans. We were told he wouldn’t survive a biopsy ,stay a couple of days in hospital then sent home on hospice . Lost my brother 4 days later.
What a lovely interview ❤ thank you for this! David is so kind 🙏 I reached out to him back in the day one ofbmy best friends was diagnosed with GBM. I lived a little bit longer than what the doctors predicted but sadly Brazil health system had so much negligence, he was also fighting the system besides GBM. Staying around people who fought together with him, made his last months be filled with love and courage. He never allowed negativity in, even on his last hours.
I am 52 and childhoood cancer survivor. I was diagnosed with Wilm’s tumor in 1977 at age of 6. I had a left nephrectomy with 2 years of chemotherapy and cobalt radiation. Lucky for me I had an 85% cure rate. I did great until 1997 I was discharged with Papillary thyroid cancer and had a total Thyroidectomy. It was a rough few years, but life became more normal. At this time I had been Oncology nurse for 3 years. In 2012 I relapsed with Thyroid cancer. I had a butterfly mass on my layreangeal nerve. I had 2 amazing surgeons. Life moves on and I was diagnosed with a Leomyosarcoma of the abdomen. My mass was near renal artery and was about 4x4 mass with clear margins. That was the most difficult Surgery I have had to go through. All my surgeons agree that Cobalt radiation had a lot to do with all my cancers. I am a slow healer to the abdomen. I have also been a nurse for 30 years. Being on both sides has humbled me. I thank God everyday for life I have been given. I am thinking about starting a podcast for long term pediatric patients that have survived and are looking for support as there have been many more challenges that we all have faced. I absolutely loved listening to this interview. I am writing a similar story.
I would have no idea on how to start a podcast, but if you could reach out I would love that.
Has anyone ever told you that Cobalt Radiation can cause other cancer years later? I had Cobalt Radiation when I was a toddler for tumors in my trachea. Twenty five years later I had a thyroidectomy due to 4 precancerous tumors on my thyroid. I was told it was probably caused by the Cobalt Radiation. Three years ago I was treated for breast cancer and I was very nervous to have radiation again. It can be frightening.
My Thyroid and Leimyosarcoma are result from Cobalt radiation.
@@darlenepietzak9847my spouse had childhood cancer and has developed cancer again 14 years later the oncologists are 99% sure it was from radiation she received as a child it’s devastating.,
Wow ... unbelievable interview 👏👏thank you for sharing...Positive attitude.. positive thoughts.. positive outcome...Good luck to you David & your fiance...lots of love and happiness and cute babies...🙏❤️🍀🤞🍀😊
Great interview David! Thank you David and the GBM Research Org. for doing such incredible work in the GBM community and research. Your story is very inspiring and it’s so awesome that it has reached so many people in need of hope, help and understanding. Really proud of you. ❤
Thank you and may the Lord bless you. 🙏🏼
I have recently been diagnosed with Grade IV unmethylated GBM at 67 years of age. Started Temozolomide and Radiotherapy this week.
Trying to learn more about treatments. ❤️ 😰
What an incredible man and story. A dear friend of the family, Nancy, just passed away recently from a GBM. She was sick for a long time and was hesitant to go to the doctor and by the time they found out what was going on she was ready for hospice. So incredibly heartbreaking.
I'm so happy to hear a GOOD story about a GBM survivor...there aren't very many good stories, many sad ones. Another inspirational young man is The Shape Game here on youtube! His name is William and I believe he is a 5+ year survivor that's had a great outlook and positive attitude throughout his journey
Thank you David, I am so glad you are here ☀️
He is very rare.
Singular and term used too often a miracle
Awesome interview and fabulous organization 👏🏼👏🏼👏🏼
such an intelligent and caring man
SO AMAZING ❗️❗️❗️
You better be your own advocate. Read your reports!!! I could write a book about crap ive been through with doctors who dont do their due diligence
Lynch syndrome is very frightening.
How does he get credited as the "longest GBM survivor in the US" at 20 years from diagnosis? There's someone who works at the neurosurgery clinic here in Cincinnati that's over 30 years from dx, and there are a few 30+ year survivors I've talked to online - not sure if they're all in the US but at least one of them is. There are hundreds of 20+ year GBM survivors in the US. It's obviously not the norm, but it's a solid chunk of people.
Longest living pediatric survivor of GBM. He had it twice. Not sure I’ve ever heard of hundreds of pediatric long term survivors.
That’s great to hear! Perhaps you can get some of these 30+ year survivors you know to connect with the Glioblastoma Research Organization and share their stories.
LYNCH SYNDROME TOTALLY EXPLAINS IT...
Yes, it seems if his tumors are encapsulated then his situation is very different from most people with glioblastoma.
What's with the headphones while sitting next to each other
They connect to the audio box which is also connected to the microphones! Helps us hear how loud we speak into the microphones and make sure there's no annoying background noise 😄
Lost my sister in 4 months 😢 she had double glio tumors
Lost my sister about 6 months ago. She lived 2 1/2 yrs with it. So sorry for your loss. I definitely believe in alternative protocols which my sister didn't do. Terrible disease.
@@goldieshawel8683
I'm sorry for your loss too
Did alternative
Did surgery
She lost the ability to speak properly and write.
@@WendyHardy-wo6gl just sucks
Loosing my daughter in law slowly 2.5 years since her surgery, hoping for more time even though she isn’t the girl she once was, blind and confused she has 2 little girls who love her dearly.
Did you have covid