We are walking this journey with my brother who has lived much longer than predicted from his original astrocytoma but was diagnosed with a new tumor a year ago. It is always good to remember, no one but God numbers our days. He knows your tomorrows & will walk with you until the day comes He sends His angels to take you & protect you on the journey home to Himself. You hold the greatest hope, an eternity thats bright & the knowledge that the two of you will see each other again. Perhaps He will take all His true believers before it comes to that. Gods blessings upon you.
Appreciated the update. Praying for you both! "Been there and done that". Based on what you said, it is amazing the treatment options that have advanced for GBM over the last five years. Encouraging to hear. This GBM journey will strengthen your faith!
Brandon and Cari, I have been following your story; my seventy year old husband has a GBM; diagnosed August 2019. It just occurred to me that I haven't heard you mention getting Avastin infusions as a treatment option. This had helped slow tumor cell growth in my husband's case; it cuts off blood supply the tumor needs for it's growth. I am hopeful for you! Love and prayers, Kathy and Dan, Gilroy Ca.
The “donut ticket” was priceless!!! Even I smiled. I totally understand some of your cancer complexity considerations. I was married to a top cancer nurse in our major hospital and sometimes picked up some cancer conversations. It’s so weird to be watching these videos and not racing ahead to see what other ones you have posted to see what happened. So, there is a time lag in my understanding of the timeline.
love and best wishes to you both from NZ.And special love to Carrie- I am the wife of a warrior man who had a massive brainstem stroke 10 years ago- he is tetraplegic and not able to speak but is the strongest battler i know. And I am part of his battle everyday too..xox
I was diagnosed with a Glioblastoma in August after surgery in July. Finished radiation on October 1st and was on chemo the whole time. You the pill form. So I’m just getting started so watching your videos help me. Thank You for sharing. And may God bless all of you on this journey. Me and my family are still coming to terms with it. Again thank you and may God help y’all.
Hi, how are you doing now? My brother was diagnosed in April 2022 and underwent resection and debulking of a 3.2 x 2.4 cm tumor on left frontal lobe. Thank you so much and I pray 🙏🏻 you are doing well.
Awwwwwww plz dont lose hope in God n He surely listens if u have strong faith in Him I will keep u in my prayers 🙏🏿thats all we can do along with treatment
Thank you for posting, always wondering how you are doing. You are such a good man it just makes me shake my head and want to scream WHY. I also know those are answers that we may never know. 🙏🙏🙏❤️
My brother had three weeks of radiation BEFORE his IL2 at Brigham and Woman’s or Beth Israel (forget now). My brother NEVER complained, just loved showing off his *tattoos*… My brother did one round of the Interleukin 2, his heart couldn’t take it, and that was it. This was in 2009,before all the other kidney cancer drugs became available. My brother thought by participating in the IL2 Clinical trial in Boston, he would help someone in the future, so that is one of the reasons why he did it. Miss my brother, but happy he fought.
You look great, Brandon. My Dad was diagnosed with gbm last October. Not as strong as he once was but hes still fighting. Thanks for the updates...Its really helping me get through these tough times. 😉
God bless you, my prayers out to you guys. I dont know if you remember me messaging you guys before..but my dad was diagnosed back in march with glioblastoma grade 4...he unfortunately passed away September 29,2020 at the age of 58..we're heart broken still cant believe that his gone..we thought he was doing great after the regular treatments but out of nowhere he was losing balance again so we took him in and they said the tumor had spread all over his brain and his brain had shifted and there was a bleeding..he fell in the bathroom once since he lost balance, they said he had 3 or 4 days to live..we took him home in hospice and he lasted 4 weeks. It was so hard seeing him suffer the way he did on his last days. I pray that scientists find a cure for brain cancer & pray that you find something that works for you.
My prayers go out to you and your family. My Dad was diagnosed with GBM 13 months ago. Its been so hard on our family especially my Mom. She's not the same. She still takes care of him the best she can but to see the love of her life of 58 years battling this horrible disease is not the best thing to go through, especially at the age of 82. As I was reading your post I noticed that you said your Dad had some side effects before he passed. I bring this up b.c I'd like to know what to look for before My Dads symptoms get worse than what they r right now. As I said, my Dad was diagnosed last Oct. He can still understand when spoken to, speech is more slurred and sometimes he doesn't talk. But that's only at night when hes really tired. He still has an appetite, he walks to the stairlift about 9 steps, and another 9 steps to his bed. He still uses the commode and urinal and some times he'll want to use the bathrooms toilet. I help him take a shower but I've noticed its getting harder to get him on the shower bench. My Dad never had headaches or seizures since being diagnosed. His symptoms are more stroke like symptoms. If anything I mean anything you can say about what symptoms to look for would be great. Again. I'm sorry to hear about your Dad.
Not sure why I couldn't see your reply post on this thread..but I'm glad I saw it on my notification tab. I wanted to let you know that I saw the symptoms that you were referring to. A few weeks after I posted to you I started seeing signs of my Dad going downhill. The first sign was that he stopped walking. He tried but a few steps turned to zero steps. The next sign was that he couldn't lift his body to get out of bed. And the 3rd sign was that he couldn't speak. He understood what we were saying..but he couldn't respond the way he used to. We saw the doctor and they said we should think about putting my Dad on hospice. A week later we put my Dad on hospice. He knew what was going on and a week after being put on hospice my Dad passed away. He was rarely in pain only when we turned him in bed. The last day of his life he was unconcious and his breathing really got heavy. He took his last breath with his entire family by his side. My Dad was the strongest person I have ever met but to watch your parent die in the house you grew up in makes so much harder. Thanks for the feedback. R.I.P T.P.L
WHAT DOES cARRIES NECKLACE SAY? i LOVE THE faith THAT YOU 2 SHARE..you..HAVE TOUCHED SO MANY PEOPLE WITH YOUR FAITH BRANDON..i FEEL THAT YOU HAVE BEEN chosen BY god BECAUSE YOU ARE REACHING SO many PEOPLE AND BRINGING THEM TO God..LOVE AND PRAYERS TO YOU ALL..God bless you!
Have you ever thought about looking into Fox Chase Cancer Center in Philadelphia. They are one of the 13 centers in the US with multiple clinical trials . Hugs and prayers to you and your family.
Was seriously just thinking about you folks the other night! Woke up in the wee hours of the morning with "Brandon and Carrie" on my heart so I believe that may have been a GOD tap to pray🙏🙏🙏🙏 Hope you receive the answers you need to direct you and guide you where HE would have you to go. Blessings to you and your family!!
@7:50…totally agree, is it worth it? What kind of life is it doing all these drugs? My brother almost died on the IL2! When IL2 didn’t work and there were no more options for him at that time (2010), he was actually happy. He told me he loved a great life, but he was done and wanted to be pain free I he died. Who could blame him after the horror he went through during that awful clinical trial medication. So sad all around.
You know what i was just checking if there is any update from u guys last night n here u come I do pray for u two whenever i pray for my husband My hubby completed 6rounds of lomustine and his blood counts dropped n he had to stop n it took his counts a year to come back to normal (added avastin was also stopped bcoz he started having side effects from that too) A new spot showed up in his recent MRI (9months post avastin or any treatment) n doctors have to look into that whether its tumor progression or radiation scar but its worrisome Please whenever u pray for urself keep him in prayers n may Allah almighty give u the strength to make decision in ur favor ameen
Hi Barbara, How are you doing? I’m praying 🙏🏻 for you. My brother was diagnosed in April 2022 and underwent a craniotomy with resection and debulking. His tumor was 3.2 x 2.4 cm. I appreciate your feedback and and hoping all the best for you. ✨❤️✨❤️✨❤️✨❤️✨❤️✨❤️✨
I am not religious, but I am so sad you didn’t get the immuno therapy treatment that I will pray to anyone listening for you.. Maybe try kannabis oil, I know it helped my friend with glioblastoma and she did manage to get 5 extra years with it... I am sorry that you have to go through all that and that your options are limited. I wish you all the best with whatever you decide and I understand the dilemma between quality of life and side affects from chemo. I wish you the strenght to choose wisely, I can only imagine the tough call this must be. Wishing you all the best, your wife and your kids. ❤️
My daughter is 3-1/2 years out from diagnosis with GBM. PLEASE PLEASE ask your doctor to look into the OPTUNE!!!! She has been using it for over two years. Again, PLEASE check into this. ❤❤
You know you never know but your insurance company could've turned your hospital down I would go behind their back and call the insurance company and find out if that's what happened because I've had things like that happen and it was a disaster and I'm still fighting with the insurance company that would not surprise me that they take a different turnwith your therapy due to insurance money and Claims etc.
I'm not shy and I'm not spiritual...do the chemo with the option to quit....its a different kind of chemo....your reaction to it could be completely different. Now is the time to hit and hit hard to take advantage of the surgery and radiation. I speak from experience...not glioblastoma but another type of cancer with a 20% survival rate. You get one chance...make it count. You don't want to regret not doing everything you can because you won't get this opportunity again...and doctors can be WRONG. I found your channel because my friend also had this kind of cancer....when his came back they could not do do surgery....he opted out of any additional treatment putting quality over quantity....but that quality did not last long...his last two months were not what he had hoped for...I'm sorry to be blunt but you are just too young to throw away options.....do chemo and in the meantime see what other trials and treatments are out there.
My mum was diagnosed Christmas Eve had surgery which removed 90 percent she had 3weeks of chemo tablets at home and radiotherapy we went back last weeks after scans and treatment didn’t work so she has 3months because of covid they seem to not be bothering to offer her much I’d seen about were they give the tumour herpes then an anti vaccine which has had amazing results in amaerica but they won’t go for it over in the uk this year has sucked for many but her having to self isolate and not see her even with her dying is so hard best wishes to u
I am optimistic that the best doors may still be opening for you. There is a vaccine called dcvax which has saved lives/extended survival in GBM and is about to release their phase 3 outcomes any day, and presenting at Society of Neuro Oncology on Nov. 20th. Subsequent to that their may be FDA approval after the deliberation period which hopefully isn't that long. Many more doors including combining this vaccine with other immunotherapies regardless of PDGFR or any other mutation as the vaccine is made up of the patients own brain tumour (if a new surgery takes place or the previous tumour is kept frozen and ok). I know previous vaccines have been made with 1 gram of tumour tissue.
I'm sorry I also own shares in this company..I almost forgot. nwbio.com/press-releases/. Vegas + imiquimod studies were off the chart on survival (and patients were given just 1 else of the vaccine, not 4-12 doses) like the phase 3...
I just randomly run into your videos and I truly wish you all the best guys... Please do not make this kind of decisions all by yourself. Look for second, third opinion...
We are walking this journey with my brother who has lived much longer than predicted from his original astrocytoma but was diagnosed with a new tumor a year ago. It is always good to remember, no one but God numbers our days. He knows your tomorrows & will walk with you until the day comes He sends His angels to take you & protect you on the journey home to Himself. You hold the greatest hope, an eternity thats bright & the knowledge that the two of you will see each other again. Perhaps He will take all His true believers before it comes to that. Gods blessings upon you.
Appreciated the update. Praying for you both! "Been there and done that". Based on what you said, it is amazing the treatment options that have advanced for GBM over the last five years. Encouraging to hear. This GBM journey will strengthen your faith!
Brandon and Cari, I have been following your story; my seventy year old husband has a GBM; diagnosed August 2019. It just occurred to me that I haven't heard you mention getting Avastin infusions as a treatment option. This had helped slow tumor cell growth in my husband's case; it cuts off blood supply the tumor needs for it's growth. I am hopeful for you! Love and prayers, Kathy and Dan, Gilroy Ca.
The “donut ticket” was priceless!!! Even I smiled. I totally understand some of your cancer complexity considerations. I was married to a top cancer nurse in our major hospital and sometimes picked up some cancer conversations. It’s so weird to be watching these videos and not racing ahead to see what other ones you have posted to see what happened. So, there is a time lag in my understanding of the timeline.
love and best wishes to you both from NZ.And special love to Carrie- I am the wife of a warrior man who had a massive brainstem stroke 10 years ago- he is tetraplegic and not able to speak but is the strongest battler i know. And I am part of his battle everyday too..xox
I was diagnosed with a Glioblastoma in August after surgery in July. Finished radiation on October 1st and was on chemo the whole time. You the pill form. So I’m just getting started so watching your videos help me. Thank You for sharing. And may God bless all of you on this journey. Me and my family are still coming to terms with it. Again thank you and may God help y’all.
Hi, how are you doing now? My brother was diagnosed in April 2022 and underwent resection and debulking of a 3.2 x 2.4 cm tumor on left frontal lobe. Thank you so much and I pray 🙏🏻 you are doing well.
Was diagnosed with grade 4 GBM non-operable in Feb. its month 7 now and was given 7 to 12. Your videos keep me going im praying for yall.
Awwwwwww plz dont lose hope in God n He surely listens if u have strong faith in Him
I will keep u in my prayers 🙏🏿thats all we can do along with treatment
Praying for you DJ!
Prayers with you DJ 🙏
Good luck man I’m sorry to hear. Praying for you to my man.
Hugs and prayers to you.
Thank you for posting, always wondering how you are doing. You are such a good man it just makes me shake my head and want to scream WHY. I also know those are answers that we may never know. 🙏🙏🙏❤️
My brother had three weeks of radiation BEFORE his IL2 at Brigham and Woman’s or Beth Israel (forget now). My brother NEVER complained, just loved showing off his *tattoos*… My brother did one round of the Interleukin 2, his heart couldn’t take it, and that was it. This was in 2009,before all the other kidney cancer drugs became available. My brother thought by participating in the IL2 Clinical trial in Boston, he would help someone in the future, so that is one of the reasons why he did it. Miss my brother, but happy he fought.
You look great, Brandon. My Dad was diagnosed with gbm last October. Not as strong as he once was but hes still fighting. Thanks for the updates...Its really helping me get through these tough times. 😉
I pray for you and your family every day, asking God for his mercy and grace.
Be strong. Think positive. Praying for you and your family.
God bless you, my prayers out to you guys. I dont know if you remember me messaging you guys before..but my dad was diagnosed back in march with glioblastoma grade 4...he unfortunately passed away September 29,2020 at the age of 58..we're heart broken still cant believe that his gone..we thought he was doing great after the regular treatments but out of nowhere he was losing balance again so we took him in and they said the tumor had spread all over his brain and his brain had shifted and there was a bleeding..he fell in the bathroom once since he lost balance, they said he had 3 or 4 days to live..we took him home in hospice and he lasted 4 weeks. It was so hard seeing him suffer the way he did on his last days. I pray that scientists find a cure for brain cancer & pray that you find something that works for you.
My prayers go out to you and your family. My Dad was diagnosed with GBM 13 months ago. Its been so hard on our family especially my Mom. She's not the same. She still takes care of him the best she can but to see the love of her life of 58 years battling this horrible disease is not the best thing to go through, especially at the age of 82. As I was reading your post I noticed that you said your Dad had some side effects before he passed. I bring this up b.c I'd like to know what to look for before My Dads symptoms get worse than what they r right now. As I said, my Dad was diagnosed last Oct. He can still understand when spoken to, speech is more slurred and sometimes he doesn't talk. But that's only at night when hes really tired. He still has an appetite, he walks to the stairlift about 9 steps, and another 9 steps to his bed. He still uses the commode and urinal and some times he'll want to use the bathrooms toilet. I help him take a shower but I've noticed its getting harder to get him on the shower bench. My Dad never had headaches or seizures since being diagnosed. His symptoms are more stroke like symptoms. If anything I mean anything you can say about what symptoms to look for would be great. Again. I'm sorry to hear about your Dad.
Not sure why I couldn't see your reply post on this thread..but I'm glad I saw it on my notification tab. I wanted to let you know that I saw the symptoms that you were referring to. A few weeks after I posted to you I started seeing signs of my Dad going downhill. The first sign was that he stopped walking. He tried but a few steps turned to zero steps. The next sign was that he couldn't lift his body to get out of bed. And the 3rd sign was that he couldn't speak. He understood what we were saying..but he couldn't respond the way he used to. We saw the doctor and they said we should think about putting my Dad on hospice. A week later we put my Dad on hospice. He knew what was going on and a week after being put on hospice my Dad passed away. He was rarely in pain only when we turned him in bed. The last day of his life he was unconcious and his breathing really got heavy. He took his last breath with his entire family by his side. My Dad was the strongest person I have ever met but to watch your parent die in the house you grew up in makes so much harder. Thanks for the feedback.
R.I.P
T.P.L
I’m so very sorry for your loss. My brother was diagnosed with GBM in April 2022.
Yinz are in my prayers every day. Believe in a miracle. Love you guys
Adding you, Carrie and family to the top of the prayer list. God bless.
The Nolan clan is definitely praying for those decisions (and that the parking ticket gets forgiven:). So glad to hear an update.
Good luck my friend, you are so focused and strong
My prayers continue everyday. May God grant you complete healing. God Bless you both and your children.
Praying for both of you as face this. Y’all are so very strong
You guys are so strong , keep your head up ! You got this !!! As always your in our thoughts ...
WHAT DOES cARRIES NECKLACE SAY? i LOVE THE faith THAT YOU 2 SHARE..you..HAVE TOUCHED SO MANY PEOPLE WITH YOUR FAITH BRANDON..i FEEL THAT YOU HAVE BEEN chosen BY god BECAUSE YOU ARE REACHING SO many PEOPLE AND BRINGING THEM TO God..LOVE AND PRAYERS TO YOU ALL..God bless you!
Have you ever thought about looking into Fox Chase Cancer Center in Philadelphia. They are one of the 13 centers in the US with multiple clinical trials . Hugs and prayers to you and your family.
Wishing you the best!
Hope all is well! Love to hear an update.
Prayers sent daily for you both.
New subscriber I'm gonna be praying for you too. Keep up those good attitudes ❤.
I was just thinking of you guys today and then you posted an update. I will be praying for you ❤
Was seriously just thinking about you folks the other night! Woke up in the wee hours of the morning with "Brandon and Carrie" on my heart so I believe that may have been a GOD tap to pray🙏🙏🙏🙏 Hope you receive the answers you need to direct you and guide you where HE would have you to go. Blessings to you and your family!!
@7:50…totally agree, is it worth it? What kind of life is it doing all these drugs? My brother almost died on the IL2! When IL2 didn’t work and there were no more options for him at that time (2010), he was actually happy. He told me he loved a great life, but he was done and wanted to be pain free I he died. Who could blame him after the horror he went through during that awful clinical trial medication. So sad all around.
You know what i was just checking if there is any update from u guys last night n here u come
I do pray for u two whenever i pray for my husband
My hubby completed 6rounds of lomustine and his blood counts dropped n he had to stop n it took his counts a year to come back to normal (added avastin was also stopped bcoz he started having side effects from that too)
A new spot showed up in his recent MRI (9months post avastin or any treatment) n doctors have to look into that whether its tumor progression or radiation scar but its worrisome
Please whenever u pray for urself keep him in prayers n may Allah almighty give u the strength to make decision in ur favor ameen
Please tell me your husband's name. I definitely want to keep him in my prayers.
Brandon & Carrie Kail his name is ahmad,and he is sending u best wishes n prayers for you and ur beautiful family 💕God bless 🧡
🙏
Prays for you and your family!!!!
You two got this!!!!
Sending you love from NZ :)
Praying so hard for you!!! Do the keto diet it will help so much!!!
I’m walking in your same shoes. I have GBM4. This disease horrible.
I'll add you to my prayers, Barbara!
@@bjkail24 Same to you. Stay strong. My prayers are with you
Brandon & Carrie Kail right back at ya 🦋🦋🦋
Hi Barbara,
How are you doing? I’m praying 🙏🏻 for you. My brother was diagnosed in April 2022 and underwent a craniotomy with resection and debulking. His tumor was 3.2 x 2.4 cm.
I appreciate your feedback and and hoping all the best for you. ✨❤️✨❤️✨❤️✨❤️✨❤️✨❤️✨
I am not religious, but I am so sad you didn’t get the immuno therapy treatment that I will pray to anyone listening for you.. Maybe try kannabis oil, I know it helped my friend with glioblastoma and she did manage to get 5 extra years with it... I am sorry that you have to go through all that and that your options are limited. I wish you all the best with whatever you decide and I understand the dilemma between quality of life and side affects from chemo. I wish you the strenght to choose wisely, I can only imagine the tough call this must be. Wishing you all the best, your wife and your kids. ❤️
Praying for a good outcome. Praying always.
My daughter is 3-1/2 years out from diagnosis with GBM. PLEASE PLEASE ask your doctor to look into the OPTUNE!!!! She has been using it for over two years. Again, PLEASE check into this. ❤❤
Kay I wish your daughter all the best with her journey and fight. I am so sorry for the struggle she has to go through. ❤️
You look very healthy 👍🏻
PLEASE BE STRONG I PRAY FOR YOU FROM ISRAEL !!!!!!! GOD HELP YOU AMEN!!!
You know you never know but your insurance company could've turned your hospital down I would go behind their back and call the insurance company and find out if that's what happened because I've had things like that happen and it was a disaster and I'm still fighting with the insurance company that would not surprise me that they take a different turnwith your therapy due to insurance money and Claims etc.
I'm not shy and I'm not spiritual...do the chemo with the option to quit....its a different kind of chemo....your reaction to it could be completely different. Now is the time to hit and hit hard to take advantage of the surgery and radiation. I speak from experience...not glioblastoma but another type of cancer with a 20% survival rate. You get one chance...make it count. You don't want to regret not doing everything you can because you won't get this opportunity again...and doctors can be WRONG. I found your channel because my friend also had this kind of cancer....when his came back they could not do do surgery....he opted out of any additional treatment putting quality over quantity....but that quality did not last long...his last two months were not what he had hoped for...I'm sorry to be blunt but you are just too young to throw away options.....do chemo and in the meantime see what other trials and treatments are out there.
Thank you for your candor.
Honest information appreciated. Very insightful post. Thank you for sharing.
Can you get a second opinion at Duke? They are considered the experts on your tumor type. As a minimum, reach out to them via phone.
Thank you for the recommendation!
Brandon & Carrie Kail just make sure ur insurance covers at duke otherwise they dont give u a damn sadly
My mum was diagnosed Christmas Eve had surgery which removed 90 percent she had 3weeks of chemo tablets at home and radiotherapy we went back last weeks after scans and treatment didn’t work so she has 3months because of covid they seem to not be bothering to offer her much I’d seen about were they give the tumour herpes then an anti vaccine which has had amazing results in amaerica but they won’t go for it over in the uk this year has sucked for many but her having to self isolate and not see her even with her dying is so hard best wishes to u
Oh my, God bless your Mother and prayers to her and your family.
Yes, I heard about that study, weren't trials done at MD Anderson in Texas?
I am optimistic that the best doors may still be opening for you. There is a vaccine called dcvax which has saved lives/extended survival in GBM and is about to release their phase 3 outcomes any day, and presenting at Society of Neuro Oncology on Nov. 20th. Subsequent to that their may be FDA approval after the deliberation period which hopefully isn't that long. Many more doors including combining this vaccine with other immunotherapies regardless of PDGFR or any other mutation as the vaccine is made up of the patients own brain tumour (if a new surgery takes place or the previous tumour is kept frozen and ok). I know previous vaccines have been made with 1 gram of tumour tissue.
I'm sorry I also own shares in this company..I almost forgot. nwbio.com/press-releases/. Vegas + imiquimod studies were off the chart on survival (and patients were given just 1 else of the vaccine, not 4-12 doses) like the phase 3...
Dcvax,,,not Vegas
🙏🙏🙏
Look for second opinion.
I just randomly run into your videos and I truly wish you all the best guys...
Please do not make this kind of decisions all by yourself. Look for second, third opinion...