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GBM High Grade - Going Alternative Treatment/Agent Orange

djwill5
Posts: 13
Joined: Feb 2013

Hello all, I'm struggling a bit and decided this looked like the place to go!  My husband had surgery on January 9, 2013.  They were able to get over 98% of the tumor - yay!  When David came out of recovery, he couldn't do anything with his right side.  Please keep in mind he worked full time as a correctional officer until the day of surgery.  The doctor ordered another MRI, so out of NERUICU and back downstairs.  It didn't show any sign of stroke, so the surgeon chopped it up to "I could have left more of the tumor, if that's what you wanted?"  What in the world!  From the hospital he was moved to a rehabilitation hospital, where they were able to get him walking somewhat with a quad cane.

Anyways, we chose to do the alternative treatment.  We're going from a book "Outsmart Your Cancer."  The success rates this "supplement" says it has is increadible!  We're using Protocel, which we refer to as David's "motor oil."  Has anyone else tried this?  I watched my BIL die of cancer, he was so terribly sick from treatments, I didn't want that for David, nor did I want our teenager still at home dealing with it.  We questioned radiation, but then worried about the damage that it cause with the good cells.  In my husbands words, I'm already 1/2 a vegetable, why take a chance on making it worse?  I have to agree.

Both of our employers have been awesome.  He's eligiable to retire with full benefits, and I was prepared to do the paperwork, but his HR person said hold on.  She had really done some research, so we decided to burn his 7 months of sick leave he'd built up and then go to long term disability.  They have been doing all sorts of fundraisers for us, it's been awesome.  I'm a school employee and was fearful I would need more than the 14 weeks that is allowed by FMLA.  My head boss told me to take all of the time I needed and I would have a job when I was able to come back.  What a blessing!

We are also trying to pin this to Agent Orange.  David was in Vietnam during war time.  He lost a little boy in the mid 70's to a brain tumor, of which they didn't find until after the fact.  The doctors then said that it could very possibly be linked to Agent Orange.  Then his wife suffered 5 miscarriages before having a live birth.  Both of his boys from that marriage were very sick when they were born, and again, that could be linked to AO.  Of course the VA is fighting us, because this cancer isn't on their "list from AO".  Ugh, what a paperwork nightmare, and we live 60 miles away from the VA office.  Has anyone had success in pinning this?

David is having some really ugly spells, is this common?  We've been married 15 years, and he's been uglier this past week, then I've ever seen him!  A couple of days after the incident, I'll ask him just what he thought he was doing making those kind of statments, and he doesn't remember!  I have been told by several people that we're dealing with loss of independence, cancer and a traumatic brain injury all at once.  I understand that, well, to the best of my ability anyways, but these are not the times I want to remember about him!  

Thanks for listening to me ramble <3 Jami

jalu
Posts: 58
Joined: Jan 2013

You have an interesting theory related to Agent Orange.  I would definely pursue that line of research.  Because you mention you are going with alternative treatments I wanted to suggest a book for you:  Surviving "Terminal" Cancer by Ben A. Williams.  He was diagnosed with a glioblastoma in the spring of 1995.  He had surgery and radiation and incorporated many types of alternative therapy drugs into his regimene (tamoxifen, accutane, verapamil, melatonin, PSK, etc.) along with chemotherapy.  He had a complete remission of the tumor -- and has received clean MRI's since.  An interesting read.  

He makes one reference to Agent Orange saying:  "My father was a county agricultrual agent, which meant that he worked for the extension service of the University of Kentucky.  Because his job entailed dispensing advice to farmers, chemical companies frequently sent him samples of their products.  Of course, his children were the ones who did the actual spraying and dusting and all of us had stories of being drenched with DDT, breathing fumes from Agent Orange, and more."

Good luck with your fight -- I wish you the best.

djwill5
Posts: 13
Joined: Feb 2013

We are going with the "9 month" time line, better safe than sorry, I guess.  I faxed 21 pages to the VA just this morning.  It's so frustrating at times.  My husband tried to claim Agent Orange one other time, after his boy passed away, but being from Kansas, they said he didn't have a chance.  If we won, sure the money would be nice, but more importantly, we want others out there to know there's a possiblity.  Thank you for the heads up on that book.  I will definately look into!  We know sugar is a huge no - but David doesn't seem to care.  I just look at it as "he knows what he's to eat and not eat, he's a big boy and can make his own decisions."  Even though I don't like them, I live with those decisions, knowing its not my life to live.  Thanks for listening to me ramble.

djwill5
Posts: 13
Joined: Feb 2013

We are going with the "9 month" time line, better safe than sorry, I guess.  I faxed 21 pages to the VA just this morning.  It's so frustrating at times.  My husband tried to claim Agent Orange one other time, after his boy passed away, but being from Kansas, they said he didn't have a chance.  If we won, sure the money would be nice, but more importantly, we want others out there to know there's a possiblity.  Thank you for the heads up on that book.  I will definately look into!  We know sugar is a huge no - but David doesn't seem to care.  I just look at it as "he knows what he's to eat and not eat, he's a big boy and can make his own decisions."  Even though I don't like them, I live with those decisions, knowing its not my life to live.  Thanks for listening to me ramble.

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