Anyone in touch with Pete Lost at Sea?

that sounds ominous.  

i hope someone can fill us in on our unique friend. 

Sue - Trubrit 

LivinginNH said:

Hi,A few days ago I had read

Hi,

A few days ago he slipped and fell at the beach and broke his smart phone, and wrote that he would be off the blog for a few days, but he didn't mention taking it down altogether though.  I've been pulling for him, as he has such a will to live, and his kids are still so young.

that is good news indeed. He may have upset the apple cart a few times, but we're still routing for him. 

geotina said:

Pete:

Do you mean his CSN blog or his other blog.  I have his blog (Not CNS) on my list and I just went and looked and it is still there.  Last entry was he broke his phone. 

Tina

His other blog was missing for a couple of days.

Perhaps it was just a web site issue.

Always wish him well.

Marie who loves kitties

annalexandria said:

Yep, it's back!

Well, that's good.  It's always unnerving when people just disappear.

like I mentioned previously, probably just a glitch, as it has happened before and then reappeared, and thus here it is back again. Pete won't go quietly into the night, he's the personality that we all will know when his time has come.

I have been reading it on and off too.  It has become very bizarre.  I find it so difficult to read his words.  He called people on this board who chose chemo "Sheep" and he now mentions chemo as if he is back on chemo himself.  He sure has a will to live so I wish him well too

LindaK. said:

It's still there

I have been reading it on and off too.  It has become very bizarre.  I find it so difficult to read his words.  He called people on this board who chose chemo "Sheep" and he now mentions chemo as if he is back on chemo himself.  He sure has a will to live so I wish him well too

Yes, according to his blog he is back on chemo, and sadly his CEA is up too.

annalexandria said:

I think he mentioned mets to the spleen

in a recent post.  I'm actually not sure if he's ever been officially NED, as what he uses that term, it seems to include times when there is still evidence of cancer (altho perhaps improved).

I wish he had the ability to provide info in an orderly fashion.  I realize he doesn't owe that to anyone, but there may be useful bits buried in his writing, it's just impossible to tell.

I do know that he's been on chemo off and on throughout the process, so that has probably played a role in his continuing survival, along with all the rest of us "sheep".

im not in touch with him but do read his blog periodically,,mainly to follow his progress on the DC vax (which I also tried.) i follow a couple of dc vax bloggers and only two are alive. Some bloggers clearly have died,  and others might stop blogging once NED (like some CSN alums)

I'd like to piece together his story - seems he started out with stage Iv rectal cancer in 2011? Mets spread to liver and lungs. Dont know how many mets in either location, I think he was inoperable? He may have had some initial treatment in Australia through their medical,system, and I'm not sure to what degree it worked. I'm sure he wanted/wants a total cure (like who doesn't???) so at some point he opted for overseas treatment and wacky supplements. 

Somewhere, somehow, his tumor load was drastically reduced. This took maybe a year, and Im not sure if it happened in Australia, at Hallwang, through dr Vogel's TACE treatments in Frankfurt, or all of,the above! But at some point in 2012 or 2013 he got to NED or near NED, and maintained this status through dc vaccinations, follow up tace treatments (not sure about this), xeloda, and wacky supplements.  he may even have had rfa or surgery - in Australia,  but I'm not sure about that either.

This year or last he grew some more mets,  but through some combinations of treatments, they were kept under control.

seems now he's running out of money and can't go to Germany to get more treatments, including the DC vax which may have been keeping his mets under control and keeping him alive? If he has only a couple of mets, not sure why he isn't seeking surgery or some kind of zapping in Australia.. Anyway. If the dc vax really is working for him, provided he gets monthly boosters for the rest of his life (don't think anyone knows yet), what if this treatment was mainstream and covered by insurance? For the subset of mcrc patients for whom this treatment works, it could mean much longer time on this planet. And that would be quite awesome. but now he's low on funds and his mets are on the March again... Not good. 

Aside from my immunotherapy public service ad (!), is that more or less his story?  I'm more interested in the beginning - exactly how did he reduce his initial tumor load so drastically So that he could be on maintenance for so long, if that's even what really happened?

Karin

annalexandria said:

It would be great if he could write up

a clear time line of what he has done, and the results.  I do know he has been on Xeloda and perhaps other chemo as well at times.  I don't have any idea how things started for him though.  And it's impossible to tell (at least from what he has written) whether it has been the chemo or the alternative treatments, or some combination, that has kept him going this long.

I seem to remember that when I fist joined the forum he was stage III and had done FOLFOX, then started to get into all of the alternatives to prevent recurrence. I believe he had a recurrence in the liver around October of 2012.

tanstaafl said:

Pt

He was also interested in alternatives due to side effects and damage to his platinum plus liver.

Out of all his friends, he's the only one surviving, blames friends deaths mostly on them because his friends, although trying, weren't trying hard enough.  Maybe his friends aren't using chemo when they go over, unlike Pete, who knows, but odds aren't that good,

here's his plans when in Germany: (he's on Xeloda now) As soon as I have airfare I will be on plane within A DAY TO HAVE LOCAL AVASTIN AND CHEMO AND GCMAF INJECTED TO MET TO KILL IT! BEFORE IT GETS ME.

So he does chemo while calling us that do it here fools.

He also has a new met to spleen, can't remember where his other mets are, but he always has mets of some sort (takes after me, always a met here or there) whether in Germany or in Australia, why if they are so small he doesn't get them cut out, I'll never understand.  Until then he'll continue to find ways to leave his family in poverty while he whisks off to the ashrams, two hour Thai massages, expensive cars and hotels in Germany. Mi wish him luck, but it's pm his family I worry about more.

Winter Marie