Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

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RE: Looking For Glioblastoma Survivors Stage 4

by jmcneil313 on Mon Dec 12, 2016 07:44 PM

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Hi Sandralc, I also would like the link you are referring to. My twin sister passed away in July from Glioblastoma and we as well have several family members that have died from this very tumor. Thank you for sharing it.

RE: Looking For Glioblastoma Survivors Stage 4

by IrynaF on Tue Dec 13, 2016 11:54 PM

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On Dec 12, 2016 7:44 PM jmcneil313 wrote:

Hi Sandralc, I also would like the link you are referring to. My twin sister passed away in July from Glioblastoma and we as well have several family members that have died from this very tumor. Thank you for sharing it.

Hi I just found about Ben A. Williams and his experience on surviving GBM on Drug cocktails it gave me a lot of hope to save my mothers life. Look into it, there is a free movie onlie and updates about recent trials and new drugs.

RE: Looking For Glioblastoma Survivors Stage 4

by JodiC on Thu Dec 22, 2016 10:01 AM

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Oh I am so greatful to hear these stories!! My daughter is 18 an has grade 4 Glioblastoma just diagnosed in Sept.  She just finished her first treatment,  staying positive,  doing very well , we are heading to duke university in North Carolina for her follow mri to see where she stands . We are from Michigan so it's a bit of a journey for us but she is soldiering on everyday with a smile ! Thank you for sharing !! A mom can only take so many stories that seem to be going in the other direction ! So thank you!

RE: Looking For Glioblastoma Survivors Stage 4

by julesaxon on Thu Dec 22, 2016 02:28 PM

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On Dec 22, 2016 10:01 AM JodiC wrote:

Oh I am so greatful to hear these stories!! My daughter is 18 an has grade 4 Glioblastoma just diagnosed in Sept.  She just finished her first treatment,  staying positive,  doing very well , we are heading to duke university in North Carolina for her follow mri to see where she stands . We are from Michigan so it's a bit of a journey for us but she is soldiering on everyday with a smile ! Thank you for sharing !! A mom can only take so many stories that seem to be going in the other direction ! So thank you!

Hi JodiC. There are many success stories on these pages so despite what the doctors tell you keep the faith and maintain your belief. I've been through it twice and believe we can all do it. Good luck and best wishes, Julian.

RE: Looking For Glioblastoma Survivors Stage 4

by Dlynn1210 on Thu Dec 22, 2016 04:29 PM

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JodiC - Listen to Julian.  I have and am grateful to be informed so I could keep my sister by choice's husband informed. 

Julian - I printed off everything you responded back to about Mary for her husband.  We are both grateful to you.  They doubled her chemo regiment and she had a reaction to it on Tues.  Prior to that she was doing great though but praying she gets adjusted to the increased chemo intake or they reduce it some.  She was nauseous and slurring her words so her husband called 911.  Before the ambulance arrived she had a seizure.  A scan at the hosp showed her tumor site as still stable so after 1 1/2 day in the hosp they let her go home yesterday.  

Diana

RE: Looking For Glioblastoma Survivors Stage 4

by julesaxon on Thu Dec 22, 2016 09:00 PM

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On Dec 22, 2016 4:29 PMDlynn1210wrote:

JodiC - Listen to Julian.  I have and am grateful to be informed so I could keep my sister by choice's husband informed. 

Julian - I printed off everything you responded back to about Mary for her husband.  We are both grateful to you.  They doubled her chemo regiment and she had a reaction to it on Tues.  Prior to that she was doing great though but praying she gets adjusted to the increased chemo intake or they reduce it some.  She was nauseous and slurring her words so her husband called 911.  Before the ambulance arrived she had a seizure.  A scan at the hosp showed her tumor site as still stable so after 1 1/2 day in the hosp they let her go home yesterday.  

Diana

Hi Diana. I'm so pleased to hear Mary is stabilised. I must say that by my experience there is a lot we are not told but left to find out as we go along. My wife got so frustrated with that but she and the rest of my family and friends were my strength. It is so important to have that support group to keep motivation going. But I have said it before and will always encourage people to find out what may lie ahead and how I handled it by reading the book I wrote to help people through their journey with cancer. The book is only about $12 on Amazon and is called "Fullfilling your dream; the battle to beat cancer". I have made contact with so many people around the world by people writing to me after they they ead the book. This is not a sales pitch but I have been through 5 cancer diagnoses including my 2 stage 4 GBM's. I want to help people with that experience. I even heard from a maths teacher who uses the book to motivate his struggling students. I give motivational talks to people living with or surviving cancer and it is hugely rewarding for me to see the looks of relief when it dawns on people that a cancer diagnosis does not have to mean the end of the road it's just the beginning of a new road to survival. Believe you can win and there will always be hope. It's not a sob story about what I went through but a success story about how I went through it. I am now proud to tell the world that my neuro surgeon calls me "the miracle man" I'm praying for Mary and right there on her side with any support I can provide. Best of luck and wishes Julian :-)

RE: Looking For Glioblastoma Survivors Stage 4

by Rddaigle on Sun Jan 08, 2017 10:33 PM

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On Dec 11, 2016 7:10 PM julesaxon wrote:

On Dec 10, 2016 5:38 PM Cleopatra15 wrote:

On Feb 21, 2010 1:29 PM SandraLC wrote:

I have been researching cancer for the last 15 years as my husband side has had all types.  I have 2 children and wanted to be able to protect them.   Several years ago I finally found what I was looking for.  I have a few testimonals of those that have glioblastoma and are survivors for years.  Several at this point whose tumor is shrinking.  If you are interested in the information please contact me.

Sandra

Dear Sandra,

Can you share the testimonials of the survivors of GBM that you have collected over the years? My husband got recently diagnosed with GBM, underwent two surgeries, completed the six weeks of chemo and radiation and is starting his 5/23 chemo cycle from this upcoming Monday - 12/12/2016!

Thank you for your input in advance!

Best wishes to your husband! - Cleo

Hi Cleo,

Sorry to hear of your husbands diagnosis but do not despair.  You may read many testimonials from people who have survived much longer then the usual average life expectancy for people with GBM.  I, myself was diagnosed with two stage IV GBM's within twelve months in 2013/2014. During surgery to remove my second one my neuro surgeon implanted chemo laced wafers (Gliadel Wafers) into my brain to kill off any tiny cancerous cells that had not been removed during surgery.  Since then I have only had clear MRI scans.  I have also been diagnosed with prostate cancer and two malignant melanoma's.  That makes 5 cancer diagnoses for me.  My success in surviving these diagnoses inspired me to help other people affected by cancer.  I give talks to cancer groups in my local area and I wrote a book about my experiences through my more than ten years of living with cancer.  The book, "Fullfilling your dream; the battle to beat cancer" is available on Amazon and in it I prepare people for what might be in store for them during diagnosis, treatment and survival.  I write about treatments,  side effects and after effects as well as the mental approach I took to help me with my own survival journey.  As a result of the book I recieve mails from all around the world and it is a great reward for me to be able to offer inspiration and help to anyone who is looking for it.  During my most recent visit to my neuro surgeon I was so proud that he referred to me as "The miracle man"  In fact he is the miracle man who saved my life with his surgical skills and by inseting those wafers in my brain.  I now lead a full life of Gyming, golf, cycling and swiming and am well on my way to fullfilling my own dream, even though my prostate cancer has resurfaced with a vengence and I have had to be put on further treatment more than ten years after I had my prostate removed.  Stay strong and always have belief in yoursleves.  Good luck and best wishes.  Julian.

My husband 66 was diagnosed with glioblastoma multiforme a week and a half ago. He has had surgery and the Dr.s have said they removed all that they could see. His recovery this week is amazing, he is regaining the lost peripheral vision, weakness on left side and cognitive issues are going away. He had very few symptoms to begin with...except the peripheral vision loss and all of a sudden one day he couldn't read...we thought stroke, but it turned out to be cancer... I read about the survival rates and it doesn't seem real. He will be going for radiation in a couple of weeks. He seems to be doing so well! Is this normal? Is it possible he will be one that survives longer? Or is this the calm before another storm? We are all so confused right now.... I can't find the book you mention on amazon, could you send a link? Thank you

RE: Looking For Glioblastoma Survivors Stage 4

by IrynaF on Mon Jan 09, 2017 09:36 AM

Quote | Reply

On Jan 08, 2017 10:33 PM Rddaigle wrote:

On Dec 11, 2016 7:10 PM julesaxon wrote:

On Dec 10, 2016 5:38 PM Cleopatra15 wrote:

On Feb 21, 2010 1:29 PM SandraLC wrote:

I have been researching cancer for the last 15 years as my husband side has had all types.  I have 2 children and wanted to be able to protect them.   Several years ago I finally found what I was looking for.  I have a few testimonals of those that have glioblastoma and are survivors for years.  Several at this point whose tumor is shrinking.  If you are interested in the information please contact me.

Sandra

Dear Sandra,

Can you share the testimonials of the survivors of GBM that you have collected over the years? My husband got recently diagnosed with GBM, underwent two surgeries, completed the six weeks of chemo and radiation and is starting his 5/23 chemo cycle from this upcoming Monday - 12/12/2016!

Thank you for your input in advance!

Best wishes to your husband! - Cleo

Hi Cleo,

Sorry to hear of your husbands diagnosis but do not despair.  You may read many testimonials from people who have survived much longer then the usual average life expectancy for people with GBM.  I, myself was diagnosed with two stage IV GBM's within twelve months in 2013/2014. During surgery to remove my second one my neuro surgeon implanted chemo laced wafers (Gliadel Wafers) into my brain to kill off any tiny cancerous cells that had not been removed during surgery.  Since then I have only had clear MRI scans.  I have also been diagnosed with prostate cancer and two malignant melanoma's.  That makes 5 cancer diagnoses for me.  My success in surviving these diagnoses inspired me to help other people affected by cancer.  I give talks to cancer groups in my local area and I wrote a book about my experiences through my more than ten years of living with cancer.  The book, "Fullfilling your dream; the battle to beat cancer" is available on Amazon and in it I prepare people for what might be in store for them during diagnosis, treatment and survival.  I write about treatments,  side effects and after effects as well as the mental approach I took to help me with my own survival journey.  As a result of the book I recieve mails from all around the world and it is a great reward for me to be able to offer inspiration and help to anyone who is looking for it.  During my most recent visit to my neuro surgeon I was so proud that he referred to me as "The miracle man"  In fact he is the miracle man who saved my life with his surgical skills and by inseting those wafers in my brain.  I now lead a full life of Gyming, golf, cycling and swiming and am well on my way to fullfilling my own dream, even though my prostate cancer has resurfaced with a vengence and I have had to be put on further treatment more than ten years after I had my prostate removed.  Stay strong and always have belief in yoursleves.  Good luck and best wishes.  Julian.

My husband 66 was diagnosed with glioblastoma multiforme a week and a half ago. He has had surgery and the Dr.s have said they removed all that they could see. His recovery this week is amazing, he is regaining the lost peripheral vision, weakness on left side and cognitive issues are going away. He had very few symptoms to begin with...except the peripheral vision loss and all of a sudden one day he couldn't read...we thought stroke, but it turned out to be cancer... I read about the survival rates and it doesn't seem real. He will be going for radiation in a couple of weeks. He seems to be doing so well! Is this normal? Is it possible he will be one that survives longer? Or is this the calm before another storm? We are all so confused right now.... I can't find the book you mention on amazon, could you send a link? Thank you

sorry to hear about your husbands diagnosis. I guess everyone is different, my mom was recovering well after brain surgery 11/06/2016 but on 12/05 she had a stroke and now paralyzed on her left side :( tolarated well chemo &radio therapy (12/12-01/03 only three weeks of combined therapy), but now became very fragile. Scheduled for another MRI on 01/24

https://virtualtrials.com/index.cfm link to the website with useful info for new diagnosed and book of Ben Williams in PDF with new updates you can all find it at the home page.

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by Wanda21 on Mon Jan 09, 2017 10:18 AM

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Hi Gregg: How are you doing! I am a survivor as well. I am starting my new website and trying to get in touch with all 5 years and over survivors to try and get their histopathology reports and histories in one spot (the website). Let me know how you are doing and where you are. Please chat with me or reply in private to discuss.

My email . I live in Melbourne Australia. Where are you?

Regards

wanda.miles

+61400210599.

RE: Looking For Glioblastoma Survivors Stage 4

by julesaxon on Mon Jan 09, 2017 11:45 AM

Quote | Reply

On Jan 08, 2017 10:33 PM Rddaigle wrote:

On Dec 11, 2016 7:10 PM julesaxon wrote:

On Dec 10, 2016 5:38 PM Cleopatra15 wrote:

On Feb 21, 2010 1:29 PM SandraLC wrote:

I have been researching cancer for the last 15 years as my husband side has had all types.  I have 2 children and wanted to be able to protect them.   Several years ago I finally found what I was looking for.  I have a few testimonals of those that have glioblastoma and are survivors for years.  Several at this point whose tumor is shrinking.  If you are interested in the information please contact me.

Sandra

Dear Sandra,

Can you share the testimonials of the survivors of GBM that you have collected over the years? My husband got recently diagnosed with GBM, underwent two surgeries, completed the six weeks of chemo and radiation and is starting his 5/23 chemo cycle from this upcoming Monday - 12/12/2016!

Thank you for your input in advance!

Best wishes to your husband! - Cleo

Hi Cleo,

Sorry to hear of your husbands diagnosis but do not despair.  You may read many testimonials from people who have survived much longer then the usual average life expectancy for people with GBM.  I, myself was diagnosed with two stage IV GBM's within twelve months in 2013/2014. During surgery to remove my second one my neuro surgeon implanted chemo laced wafers (Gliadel Wafers) into my brain to kill off any tiny cancerous cells that had not been removed during surgery.  Since then I have only had clear MRI scans.  I have also been diagnosed with prostate cancer and two malignant melanoma's.  That makes 5 cancer diagnoses for me.  My success in surviving these diagnoses inspired me to help other people affected by cancer.  I give talks to cancer groups in my local area and I wrote a book about my experiences through my more than ten years of living with cancer.  The book, "Fullfilling your dream; the battle to beat cancer" is available on Amazon and in it I prepare people for what might be in store for them during diagnosis, treatment and survival.  I write about treatments,  side effects and after effects as well as the mental approach I took to help me with my own survival journey.  As a result of the book I recieve mails from all around the world and it is a great reward for me to be able to offer inspiration and help to anyone who is looking for it.  During my most recent visit to my neuro surgeon I was so proud that he referred to me as "The miracle man"  In fact he is the miracle man who saved my life with his surgical skills and by inseting those wafers in my brain.  I now lead a full life of Gyming, golf, cycling and swiming and am well on my way to fullfilling my own dream, even though my prostate cancer has resurfaced with a vengence and I have had to be put on further treatment more than ten years after I had my prostate removed.  Stay strong and always have belief in yoursleves.  Good luck and best wishes.  Julian.

My husband 66 was diagnosed with glioblastoma multiforme a week and a half ago. He has had surgery and the Dr.s have said they removed all that they could see. His recovery this week is amazing, he is regaining the lost peripheral vision, weakness on left side and cognitive issues are going away. He had very few symptoms to begin with...except the peripheral vision loss and all of a sudden one day he couldn't read...we thought stroke, but it turned out to be cancer... I read about the survival rates and it doesn't seem real. He will be going for radiation in a couple of weeks. He seems to be doing so well! Is this normal? Is it possible he will be one that survives longer? Or is this the calm before another storm? We are all so confused right now.... I can't find the book you mention on amazon, could you send a link? Thank you

the link to my book:-

https://www.amazon.com/Fulfilling-Your-Dream-Battle-Cancer/d

But it is quite easy to find if you just type my name (Julian Axon) into Google.  You will also find links there to a number of TV / Radio interviews where I answer questions about my cancers.  I am so happy your husband is responding well as it provides support for those who have anxiety over their diagnosis.  We can beat the beast.  I too had no prior symptoms warning me of a coming problem but just went down one night whith what the intern in the emergncy room thought was a stroke,  It took my neuro surgeon to analyse the MRI and identify a stage 4 GBM.  I am going from strength to strength now.  If you see some of the tv interviews you may see why people tell me I look so well.  At every interview I have done the interviewer has been surprised to find a survivor of 5 cancers looking so well.  I know they are expecting to be interviewing a weak old man.  Far from it.  I have just come home from a session in the gym and I am working hard at keeping up my body's physical fitness to give it the best chance it can have of fullfilling my dream to beat cancer.  You can also write on E mail "jaxon@worldonline.co.za"

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