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manwithnoname
Posts: 390
Joined: Jun 2012

Im staying, some people and their comments/emails/messages have convinced me to stay, but there is another reason, I really believe I have brought some info. here that will help people with CRC I can think of at least 3 posts that should have got far more attention than they did.

Also my mother did die from bowel cancer, she went from constipation to coma in 24 hours, I was devestated by her death, even suicidal, my wife saw how hurt I was and thought having a child would bring me back, she was right but now that child has brain cancer. My mother was only 59.

My son is the reason why Im here, this board has some great researchers, maybe Im grasping at rainbows but when you run out of options rainbows seem attractive. Our brain tumour board is a very different place, maybe it's the most depressing place on the internet, seriously...

Pete's crazy experiment with Gc-maf brought me here and I got stuck. I actually do care about people here and really want to help. I don't ever go looking for stuff on CRC, anything I find is because of brain cancer and sometimes there is a connection.

Recently Pete has said some things that I and others find offensive, the 'sheep' comment in particular, Im not going to defend Pete or the threads he starts he's an adult and can do as he chooses. I do think Pete feels a bit 'sheepish' about the things he said. Maybe...

Now at the minute there are a few threads up that read like train wrecks and Im embarrased that Im on them, I really didn't come here to offend anyone, but people have been offended, apollogies to those concerned.

Now about me, Im researching now pretty much full time, I have a small internet business that generates a small income that allows me to read and read and read.

I sometimes do 18 hours a day depending how 'interesting' the find is. Yes Im obsessed.

There is so much information that everytime I think it's exausted some new doorway opens,  some of those doors I have found here.

Also when I post something here I don't do it lightly, everthing I have posted has been checked to the best of my ability which brings me to the "ketogenic diet" post which kind of started the recent animosity.

I believe Im the only one here that's done it, I did it to support my son, I wished we hadn't, I think it grew his tumour.

This diet is a treatment for epilepsy and has cured some kids that were not responding to meds. it was tried with kids who had terminal brain tumours, one of them is still alive and on it 12 years later.

We had the FULL backing of our hospital and their nutrition team, it's NOT a lifestyle diet, it has since been tried on advanced cancer patients with some success but nothing amazing.

This diet targets the glucose metabolic path, it also sounds really unhealthy,   BUT I felt VERY good on it.

Before I started I found Innuit people used to have a very high fat/low carb diet which is very similar. They lived like that for thousands of years.

I also believe if you do a diet like this and mentally suffer from missing all the sweet stuff it probably will do you more harm than good.

Afterwards I discovered the diabetic drug Metformin was a better option to target the same thing.

I hope I have cleared some misconceptions up about this 'diet' if you disagree with any part of it that is your opinion but there is a lot of peer reviewed evidence behind it.

Now at the moment my son is doing a very experimental DC vaccine treatment using immune cells from me injected back into him with his tumour cells. It's so new it made the TV news here, I will try to get some subtitles on it and upload for you to see. (if I can figure out how)

Israel does have some cutting edge scientists and doctors and in a way it's 'lucky' we are here.

We live on the border with Syria and we do hear the war there occasionally, stray shells have landed not far from us but cancer worries me far more than war.

Israel is one of the craziest places on the planet, and it's another (sad) story how we left our farm in Andalucia and ended up here.

 

Today has been an emotional day, some things people have said brought me to tears,  Im on the edge like a lot of you are too. 

Lets try not to fight, life's too short, a cliche but sadly true.

 

 

Sundanceh's picture
Sundanceh
Posts: 4281
Joined: Jun 2009

I'm glad that today was a turning point for you:)

And I'm glad that the group was able to provide some warmth and comfort to you:)

Continued best wishes for your son...I can't imagine how hard that must be for you.  And I hope you do find something for him.

"I'm Listening..."

And I mean that in a good way, Tony!

-Craig

 

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

Now folks can understand you as an individual, separate from Pete.  They can hear in your words your big heart, your fraility, your sensitivity, and understand that your impassioned search for help for your son has brought you here.  There is a reason that you found us, not just Pete. Settle in, this can be your home too.

Sincerely,

Cynthia

PS. You and Winter Marie work out all those wounds in private messages.  It can happen, I just feel it.

jen2012
Posts: 1195
Joined: Aug 2012

Wow! Thank you for sharing so much. Im sorry about your mom and now your son. How old is your son? Do you want to share anything about him? How he's doing...physically emotionally etc. What he likes to do? Is he able to be in school? My heart breaks for you and your wife. I feel on edge all the time....not my typical personality and i dont like it...so i could see how thngs got out of hand. Im glad you are sticking around and hope to read that your sons treatment is sucessful. Thanks for taking some of the mystery out of "the man with no name" :)

janderson1964's picture
janderson1964
Posts: 1568
Joined: Oct 2011

Thank you for returning Tony. Some of your research has been interesting to me and I can tell what you post usually has backup research from the medical profession which important to me. I am not into trying the next touted diet or supplement that is supposed to cure cancer but as you know I am into alternatives if there is legitimate backup. A lot of the information you have posted I am saving in my war chest in case the day comes where I need it or am willing to try it. But I have no visible cancer at least for now so there is no point in trying something different if I have no way to monitor its effects.

annalexandria's picture
annalexandria
Posts: 2194
Joined: Oct 2011

Hopefully, we can now all get back to the primary purpose of this board...supporting each other and sharing our stories.  AA

Trubrit's picture
Trubrit
Posts: 1411
Joined: Jan 2013

I wonder if I can post my own smilies? 

I am glad you are staying. You belong. Everyone belongs. Lets just say that we had a bit of a spat between family, we all have them, then move on. 

My heart bleeds for both your family. So hard to watch someone so young suffer so much. I don't know how old your lad is, but when I watch commercials here in the states for St. Judes Children's Hospital, I cry. I cry for those little ones who don't understand what on earth is happening to them. I cry for the parents whose pain cannot be put into words. 

Post here with your news, both your research and your sons struggles. 

Yes, I am glad you are staying staying. 

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Tony. I'm pleased that you decided to stay. You have a lot to offer. Thanks for sharing re your son and your mom. I can't relate to having a child with cancer. Can't imagine anything worse.

Chelsea

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

As the mother of a child with cancer I understand completely what you are saying. My only child just turned 34. She was diagnosed with stage IV colon cancer 7 weeks after giving birth to her first child, 18 months ago. And I spend SO MUCH time researching, reading, learning, looking for support - maybe not so much now because I don't have time, but in the beginning I was up half the night. I will look anywhere, talk to anybody, take her anywhere, do anything. I would take the disease on myself if I could take it from her. And I know you feel the same way about your son. I don't know how old he is but I do know that this fierce love for our children never ever changes. My mom told me it would be this way and she was right.

I'm glad you are staying if you feel supported here. Many people here have been supportive of me. I appreciate it so much. I wish I had more time and energy to devote to the site and providing more support to others. This forum takes sooooooo long to load for me, including when I type out posts or responses that I often just lose because of it taking so long. I had a meltdown over losing a post and I just can't be having those.

There is nothing, NOTHING worse than hearing the word "cancer" in the same sentence with your child's name and embarking on this frantic journey, waking up every day hoping it was only a nightmare and realizing it is reality and nothing will ever be the same.

I am very much on edge as well, and any snippy comments directed toward me... water off a duck's back. I simply do not care about anything at this very moment except not falling apart under the weight of it all, the fear for my daughter's life, wanting to "fix it."

I do care about the people in my life, including the people here - they have been a lifeline for me in letting me know that this is not an immediate death sentence, and that there are treatments and complementary therapies that do work. I haven't been a good friend to anybody lately. My focus is so narrow.

It's just so hard.

Sandy

wolfen's picture
wolfen
Posts: 1192
Joined: Apr 2009

I must echo all that Sandy has said, but dispute the part about not being a friend. Sandy, you have always been there for me and everyone else. We understand.

And we understand your desperation also, Tony. Which of us here has never "been on edge", and then wished we could take back our last words?

The new DC vaccine sounds exciting. I remember hearing about a treatment for some malady for infants where the mother's fecal matter was put into the baby. Sounded strange, but it worked. I hope the Metformin will turn out to be a valuable remedy.

We all contibute here to the best of our ability. Mine is mostly hugs and moral support. Any type of support you wish to offer will always be appreciated and we'll be here when you need us.

Luv,

Wolfen

manwithnoname
Posts: 390
Joined: Jun 2012

all for your kind words, they are really appreciated.

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Tony, nice to meet you. I will be praying for you and your family. 

Cynthia

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