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Anyone in touch with Pete Lost at Sea?

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.

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Comments

  • Trubrit
    Trubrit Member Posts: 5,536 **
    Oh dear...

    that sounds ominous.  

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

    Sue - Trubrit 

  • LivinginNH
    LivinginNH Member Posts: 1,456
    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.

  • Trubrit
    Trubrit Member Posts: 5,536 **

    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.

    Thank you!

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

  • herdizziness
    herdizziness Member Posts: 3,624
    On vacation

    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
    annalexandria Member Posts: 2,571

    On vacation

    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.

    The message said

    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
    geotina Member Posts: 2,111
    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

  • Lovekitties
    Lovekitties Member Posts: 3,364
    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

    Other blog

    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
    annalexandria Member Posts: 2,571

    Other blog

    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

    Yep, it's back!

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

  • herdizziness
    herdizziness Member Posts: 3,624

    Yep, it's back!

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

    It happened before

    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
    Annabelle41415 Member Posts: 6,712 **
    He was unique

    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.
    LindaK. Member Posts: 506
    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

  • janderson1964
    janderson1964 Member Posts: 2,215
    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

    I follow his blog sometimes.

    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
    LivinginNH Member Posts: 1,456
    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

     

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

  • annalexandria
    annalexandria Member Posts: 2,571

     
    Yes, according to his blog

     

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

    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".

  • lilacbrroller
    lilacbrroller Member Posts: 412

    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".

    Chronology

    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
    annalexandria Member Posts: 2,571

    Chronology

    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

    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.

  • janderson1964
    janderson1964 Member Posts: 2,215

    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 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
    tanstaafl Member Posts: 1,299

    I seem to remember that when

    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.

    Pt

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

  • herdizziness
    herdizziness Member Posts: 3,624
    tanstaafl said:

    Pt

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

    He also mentions

    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

  • geotina
    geotina Member Posts: 2,111
    Marie -

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

     

    Love ya - Tina