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IrynaF's Message Board Messages

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Sean, Check out current trials for Glioblastoma. Try to get into one either at Duke poliovirus study in North Carolina, or read Cheryl Broyles story she is on Facebook and I believe she is a patient at CA of Dr. Butkovsky (I cannot find correct spelling of Dr names now) she had survived for over 20 years with glioblastoma.

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.

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.

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