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Anyone in touch with Pete Lost at Sea?

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Just wondering, as his blog has been taken down.  

As frustrated as I got with him at times, I've continued to follow his story, and hoped for his success.  His blog being removed seems strange and worrisome.

Trubrit's picture
Trubrit
Posts: 5531
Joined: Jan 2013

that sounds ominous.  

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

Sue - Trubrit 

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

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.

Trubrit's picture
Trubrit
Posts: 5531
Joined: Jan 2013

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

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

He's vacationing with is son and broke his phone, his blog has been down before, probably a glitch.  He's no where near death last I saw.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

that the blog was removed, but maybe he did something to put it into hibernation after he broke his phone?

I hope so, although it's very hard to tell with Pete.

geotina's picture
geotina
Posts: 2123
Joined: Oct 2009

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

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

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's picture
annalexandria
Posts: 2573
Joined: Oct 2011

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

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

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.

Annabelle41415's picture
Annabelle41415
Posts: 6733
Joined: Feb 2009

He was unique in his own way and he tried everything.  I'm wishing him well and hope that we can find out how he is doing.  His trials were most unusual - especially with the puss thing he ingested but that's how he rolled.  Hang in there buddy.

Kim

LindaK.
Posts: 506
Joined: Apr 2013

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

janderson1964
Posts: 2215
Joined: Oct 2011

I follow his blog sometimes. I know he is at least doing TACE which is liver directed chemo through the femural artery. I have always wished him weel but he does get confusing and offensive at times

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

 

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

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

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".

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

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's picture
annalexandria
Posts: 2573
Joined: Oct 2011

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.

janderson1964
Posts: 2215
Joined: Oct 2011

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's picture
tanstaafl
Posts: 1303
Joined: Oct 2010

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

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

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

LindaK.
Posts: 506
Joined: Apr 2013

He also makes his own yogurt and does coffee enemas.  I think he was also trying to get people to "sign up" (and pay him) for advice on his treatments.  He is desparate for money and calls his wife a hoarder.  His blog is kind of like a train wreck, so difficult to read, but oddly fascinating someone can really think the way he does.  I just can't stand the "holier than thou" attitude he seems to have.  He still mentioned recently being banned from this CSN blog and some derogatory comment about it.  So bizarre

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

once he developed a financial relationship with the German clinic he was going to.  I don't know if he actually got direct payment from them for referrals, but he did receive reduced rates for every patient he sent their way.  This was clearly not ok under the TOS for CSN.  Not to mention kind of ethically shady in general.

BTW, if people are interested in these therapies, and would like to read unbiased info on them, user Maia at the Colon Club has great links attached to her signature on that site.  She's done a ton of research on them, and has been an incredible resource for people hoping to try them (and she's not shilling for any particular clinic).

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

 

Ann dear, you forgot the main reason...he convinced Tedd and Ren to spend their entire life insurance policies ($100k+) to follow him to Germay for those unproven alternative therapies that obviously don't work.  And Tedd had a stay-at-home spouce with four kids who I'm sure really could have used that insurance money after he passed.  So, for me personally, watching him convince people to follow in his alternative path was the very worst part of his unethical story. 

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

actually Ren had money out the kazoo I think - he started an Internet search engine, or something like that.  So did not need to cash in an insurance policy. Plus most of his treatments, the TACE liver treatments were done by a different doctor/clinic from Hallwang. He got the TACE in Frankfurt from a Dr. Vogel.  Ren did a lot of his own research and reminded me of steve jobs  in the sense that money could buy him invincibility and protection from death. Ren was czech but lived in Australia, and must have had connections back in Europe. Not sure if Pete led him to these treatments or if he just found them on his own or recommendations from european doctors. 

Tedd, though, had SIX children! And he did go to Hallwang. He and I were pm-ing at that time and were evaluating german clinics that Pete had gone to. He chose Hallwang (with the removab drug) and I went for the dendritic cell treatment. We shared information with each other but made different choices Ultimately. Him I'm a little upset for because he just jumped at something while in a very vulnerable state which we all have done. But it was his choice, pied piper of,Hallwang or not. He did his own research, I guess, and decided that was best for him.

Im all for information sharing and posting of success stories, but I call people out on thse boards if they say they are cured from mega stage IV, and I  ask for details, especially if they arent regular members and it sounds too good to be true.  Some folks are legit, and do post success stories, and maybe they think they are great but they post prematurely, leading others to follow.  Sometimes these treatments keep the beast at bay for awhile but then, the mets return.  And, we hope, sometimes not!

this disease sucks and it's tough to be vulnerable and desperate. Not a cheery post but it is what it is.

karin

tanstaafl's picture
tanstaafl
Posts: 1303
Joined: Oct 2010

It is important to try to maintain perspective and clarity here.  We deal with a deadly disease that easily goes out of control, with massive financial predation and obvious, repeated technical failures as the ethical norm.  Professionally, Pete's whole style is anathema to a person like Tedd, you can rest assured he thought long and hard about Pete's limitations. 

...he convinced Tedd ... to spend their entire life insurance policies ($100k+) to follow him to Germay        Tedd cashed 1/4 of his second life insurance policy and left his corporate life insurance untouched.  Responsible family men have to do the math and it follows a pattern that can be met with a good job.  Social security survivors' benefits are a major piece of the plan, too.

...for those unproven alternative therapies that obviously don't work.    Experimental therapies that didn't work out as well as hoped. If it was that obvious, Tedd, who was well educated and experienced with the speculative nature of drug research, would have done something else.  Chemistry-wise, my wife has done only "unproven alternative therapies", at least none approved by the FDA, for almost five years without the dying or devastating chemo side effects parts. Or expense. 

...Tedd had a stay-at-home spouce with four kids who I'm sure really could have used that insurance money after he passed.  Most of all Tedd's kids needed their dad, and Tedd needed a home run with a weapon of mass cancer destruction.    He tried his best, with no wonderful, push button choices. 

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

If Pete had just stuck with reporting on his efforts with supplements, alternative threapies and German experiences things would have been ok here.

Unfortunately, he was openly hostile regarding mainstream treatments and those following them.  I think that this more than anything else contributed to the ban.

He did not understand that each person must do what they feel is right for them, including considering the financial impact to their family.  He felt one had to go "all in" on what he was doing.

His relationships here were not helped by what and how he shared his family situations.

I don't agree with what and how Pete interacts with folks, but I will always wish him best of luck with beating this disease.

Marie who loves kitties

 

geotina's picture
geotina
Posts: 2123
Joined: Oct 2009

You crack me up but you forgot walks in the forest and meditation. 

 

Love ya - Tina

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I forgot about those!! LOL, which reminds me, if my lungs are up to it, I'll go take a walk in our redwoods, much cheaper then going to Germany, although I wouldn't mind touristing over there.

love back at you,

Winter Marie

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

When I first came on the boards I would read what he was posting and be so confused but everyone seemed to respond to him as if they understood what he was talking about so I thought there was this whole other cancer language that I couldn't understand and it scared the hell out of me!  lol  Then I realized, he was just a little loopy.  I have a lot of patience for loopy and am not much a follower so he never bothered me.  I don't keep up with him outside of the ocassional google.  I figure someone on here will mention if something goes poorly.  I tried to find Louswift recently, hoping to see a posting somewhere else.  Found nothing=(  

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

 Really annoys me I either spray it with insecticide or ignore it. It is not polite to spray people so I just ignored Pete. Any sympathy I had went to his wife and family. Ron.

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