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Postcard from Duderstadt Germany Goodnews CEA down to 2.9 ca199 down to 24 ITS SPRING AND ITS BEAUTIFUL HERE

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

Dear Friends, 

I really do miss your company, and do lurk occaisionally, but am enjoying to chance to focus on my health 100% my way free of debate and challenge and with full support of my many doctors and close friends who share my beleifs with regard to experimental holistic therapies. To me that means protecting my positive focus and holistic beliefs from attack and dispute. I also spare many of you from my passionate belief in experimental and holistic therapies and my negative view of most conventional medicine.

So my withdrawal from here was really essential to my survival. I simply dont have the energy or the desire to defend myself from attacks. The ketogenic diet is going really well, a thoroughly enjoyable challenge. I feel and look better than I ever have. So I have gained 12 Kilograms , mostly muscle since starting german therapies 6 october 2012.

I have been eagerly awaiting these results with optimistic expectations and i was nt disappointed. Back in mid february I had (10+20+20) 50 micrograms of removab infused over 24 hours over a 3 week period. It caused the expected cea spike, tumour die ( which though expected was the first rise in 4 months ).

Now today I have my second fall in a fortnight down to comletely normal. the threshold here is 4.4. This is my lowest CEA since the recurence started 9th nvember 2011.

So my immune system is still eating tumour cells, I pray it continues. I have thanked God, my Doctors, myself and my friends. I have had so much support, its really made a difference.

SPRING has arrived, the town square here has come to life. this morning I woke up refreshed and prayed, to all my supplements and medications, did my daily urine and bloods tests. did my coffee enema and qigong and exercises. For me at least the holistic way to health. At breakfast I weighed every gram of food I will consume. Yes its a touch demanding , but strangely rewarding to be incontrol of every aspect of my nutrition and health. And to see the results reflected in my tumour markers and all the other tests ( far to many to mention here ) brings me enormous satisfaction that I might live to see another day or two or three. I have no guarantees, who does, but I have faith in my German miracle. Its still continuing and with the grace of God it will continue. I ask him everyday to keep it continuing.

The immunotherapy revolution is happening before my eyes. I am speaking at a conference in Frankfurt on GCMAF as an examaple of a successful patient. I got a free entry.

I got another top international conference in Mainz re immunotherapy and how to capitalise on it and the worlds leading scientists.

I am helping a few who contact me re these therapies, I think they just want reassurance that the results are real, at least that I am real.

My family arrives in a day for a months holiday, the same day my chemo port comes out due to a possible infection. Might get thhe hernia fied as well.

We might be flying to turkey for a week for Anzac day.

My life still consists of exercise, saunas, diet and lots of tests and supplements. I have this illness on the run and health firmly in my grasp. With Gods help I will not drop the ball at this point.

If you are interested in German holistic and experimental therapies that have one proven result, PM me anytime. I will get back to you when I can ( away from the net alot, which is really good )

I wish you all well.

Hugs,

Pete

PS The longer I live, the more extreme I get in a sense, so I can never really come back when I see the same suffering being done by "conventional therapies" when I have been blessed to have had such a more positive experience. It reminds me of my own suffering at the beginning of my healing journey. I am also clearly aware that we all need an authentic environment where our therapy choices match our beliefs. So I get  full support for my diet, for my lifestyle interventions and therapies from a few close friends. I appreciate all the kind thoughts and prayers over the years and I will send another postcard when I have some extrodinary news, likely in a month wen I have my final vogel chemo embolisation and mri and ct scan as a little 6 month preventitivee insurace policy.

http://petertrayhurn.blogspot.de/2013/04/postcard-from-duderstadt-germany.html my blog for therapy details, for a summary search for the media release.

 

jen2012
Posts: 1255
Joined: Aug 2012

Good to hear from you pete! Glad the tests are good too.
enjoy your visit from the family and the spring weather! Its been beautiful here too....love spring.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

ah another spring. what a glorious life! the trending down, i pray means I such little residual disease, i pray my immune system keeps on working.

hugs,

Pete

Vancouver
Posts: 16
Joined: Mar 2013

Hi there,

I'm glad you updated...been wondering...and so glad to hear that the news was good!  I plan on PM'ing you one of these days soon.  Very interested in immunotherapy as an option later down the road for my mom and would like to learn everything I can.  She is Stage IV with mets to the liver, but has had a dramatic response to xeloda (in our belief, this is also due to the complimentary alternative medicine she has been doing since diagnosis).  We will get the results from her CT next week--first CT since diagnosis and surgery in late September 2012.  Her CEA has dropped to 1.3 though, so we are hoping for good results!

Very happy for you and wishing for your continued recovery,

CT

 

thingy45's picture
thingy45
Posts: 589
Joined: Apr 2011

Hello Pete,

So glad to hear all is going so well for you. We all  have choices and you decided that this was the best choice for you and you have the means to persue it also.

I am lurking, being still Ned and not of much help to others. Looking after daughter and family because she had brain surgery. My yearly CT scan is due always a nervous and stressfull time.

Keep us posted,

hugs, Marjan

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

A few nice comments, yours is precious, we go back such a long way, when we were just doing a few walks together.

when you say "the means to pursue it " , well i guess yes the money and time for the german treatments.

but diet, rest, exercise. well most on this board, have a bed, can control what they eat, can control how they move.

its not about the money, its about the education cancer patients recieve, of course my opinions are in the minority here.

but so was john the baptist and look how well he did. have a bit of a read on the ketogenic diet for brain function and recovery, you might be surprised.

I just purchased every ketogenic book on amazon kindle, amazing reading.

one sure fire way to get your mind off the yearly CT is start the ketogenic diet with me, just joking. I hope your scan resuts are clear as a bell.

hugs,

Pete

 

 

PhillieG's picture
PhillieG
Posts: 4683
Joined: May 2005

"...so was john the baptist and look how well he did..."

Didn't he wind up with his head on a platter?*

Tongue Out

Glad your enjoying yourself and that your family will soon be with you. Best of luck with your journey...

*In the Gospel accounts of John's death, Herod has John imprisoned for denouncing his incestuous marriage, and later executes John by beheading.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

thanks phil,

we cannot take this illness or life to seriously. I hope I have a better fate than john ( not 23 ) although I have some notion of what its like being beheaded,

at least in cyber space.

john was a bit of a troublemaker in some ways.

hugs,

Pete

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

thats real kind. for what its worth, every hit of xeloda, is doing damage, if your keen on immunotherapy, email doctor nesslehut for an opinion asap before the tumour becomes resistant to xeloda.

i know what he will say, but its better coming from one of the worlds leading immunotherapists. my doctor is presenting at "asco" where all the onc go to learn.

hugs,

pete

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

See you on Tuesday march 16 if you are in the clinic that day. 

Tedd

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

hi tedd,

what time are you arriving ? I will have my family with me. Safe travels and welcome to the magic of the black forest! 

I am sure i did not use it all up, if you game do a few enema's if your keen, and some magic mushrooms won't go astray.

the level of NK cells is a clear prognostic indicator. mine have been boosted by ahcc, but corolius and rieshi is good also.

bring your gym clothes if you want to do a few workouts at the local gym, for the sauna you just need your birthday suit.

hugs,

Pete

 

 

tanstaafl's picture
tanstaafl
Posts: 1015
Joined: Oct 2010

Vancouver, some of us are always interested to hear what CAM adjuncts were added over the months and may be able to comment helpfully.

Nana b's picture
Nana b
Posts: 3041
Joined: May 2009

"

 

 

 

 

 

 

Nana b's picture
Nana b
Posts: 3041
Joined: May 2009

My CEA jumped 35 xeloda not working now 

 

Adding avastin next week. Bummer. Scans were clear in dec. 

 

Im thinking of getting off chemo My hands and feet are purple.  The only thing that keeps me on chemo the soreness I feel over my liver 

 

 

You go guy!  

 

 

 

 

 

 

Dxed
Posts: 79
Joined: Dec 2012

 

 

It has been a while since you posted. I am happy for you that you are getting good results. Enjoy your time in Turkey and enjoy the spring.

 

I am seriously considering a visit to these German clinics. Their work seems promising, and the docs seem to be on top of things.

 

What is the best/shortest way to initiate a correspondce with them. I am still trying to figure out what "PM" is and how to do that. Explanation of this issue is much appreciated.

 

Thanks Pete for your updates and your interesting epic

 

Sander

Nana b's picture
Nana b
Posts: 3041
Joined: May 2009

Easy way to pm is click in his nampict utricle pic. Go to bottom and send him a message by clicking on send participant a message. 

 

 

PhillieG's picture
PhillieG
Posts: 4683
Joined: May 2005

The spellcheck stinks and the browsers don't pick up on it either.
Plus I think many people are using iPads which makes it even trickier!

Look at User Profile where the comments are then click on the user's Name (or photo if provided)

 profile

At the bottom of their profile page is a link that says "Send this user a message"
Click on that and the message box pops up and you can write to that user...
-p
I hope you don't mind Nana B. You did say the same thing...

Dxed
Posts: 79
Joined: Dec 2012

 

 

It is so easy; I am so ignorant when it comes to technology and communications. Thanks PHillieG and thanks also to Nana B.

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Glad to hear that you are doing well...enjoy your month's holiday with the family!

alex

Nana b's picture
Nana b
Posts: 3041
Joined: May 2009

Try the link. Pete is on this diet. you can fin

D info on this clinic on line. 

KathiM's picture
KathiM
Posts: 7948
Joined: Aug 2005

but wonderful to hear from you!!!  (We are not back until early July to The Netherlands)

 

I am so happy that you are well, dearheart!!!  And that things are going well!!

 

Hugs, Kathi

thxmiker's picture
thxmiker
Posts: 1278
Joined: Oct 2010

It is always good to hear from you you Pete!

 

We are glad that your treatment is coming along postive!   It is a big battle. Kep up the updates, and have a fun time in Germany.

 

Best Always,   mike

 

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

http://petertrayhurn.blogspot.de/2013/04/staying-ned-optomistic-and-brash-and.html

thanks for the kind words, more great news 

hugs,

Pete

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

i am so happy for you! i miss reading your posts but i understand why you do not post often. you do need to focus on yourself to keep having positive results. enjoy the time with your family. and do enjoy the wonderful spring!

lots of hugs & prayers from indiana

judy

mukamom's picture
mukamom
Posts: 389
Joined: Oct 2010

smiling face!  Good to hear you are doing well!  I was wondering where you were and how you were doing.

 

Keep on keeping on, Pete!

Angela

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

You mate) and the cost for it , not including planes of course! If you wish I will appreciate!.
Hugs man .

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

pepe,

150,000 eu so far and counting. its been 6 months of full on therapy, but i am clear so far and have amazing health.

the first 10 weeks say 100,000 eu.

the last 16 weeks say 50,000 eu , less therapy , more fun , less intrusive, more vaccines.

just googel hallwang clinic, fill in the contact form and say you are a friend of pete. you will get vip treatment pepe, just like TED.

i miss you to my friend, but you are never out of my heart. noone hear is.

hugs,

Pete

ps even this holiday to turkey is a therapy break to allow my immune system to rebuild, its been hammered.

if you are coming just do it, asap. You can stay in my apartment, if you don't snore!

https://docs.google.com/file/d/1u1yfZFuumGcHCs0vVBvvMzkPk7S0qSzWLFxRFPnMeveq3pfNwQ9DfPij4_Fr/edit

the full therapy report and results. worth every cent.

PhillieG's picture
PhillieG
Posts: 4683
Joined: May 2005

$195,930.00?

manwithnoname
Posts: 402
Joined: Jun 2012

I was sent the insurance bill for a child with cancer in the US, first few months treatment cost over $1.5 million, the kid lived long enough to rack up a $12 million bill, insurance covered of course, then he died.

just sayin...

PhillieG's picture
PhillieG
Posts: 4683
Joined: May 2005

Medical costs are out of control. Thankfully I have insurance. I do not have $195,000+ though. If one has the personal resources and can just up and go (with or without their family), more power to them. Unfortunately, that's usually not the case...

just replying...

annalexandria's picture
annalexandria
Posts: 2325
Joined: Oct 2011

that these costs are prohibitively high.  It's not quite so simple as saying you're a "friend" of Pete's.  I'm assuming you still have to have the $200,000 (and counting) to cover the care.  You can easily rack that up with conventional care (I think I'm personally at about half a mil due to all the surgeries), but many of us have insurance to help take the hit.  Just not insurance that will cover this.  Too bad, maybe...

manwithnoname
Posts: 402
Joined: Jun 2012

200k is beyond most people in the world, although I think more than half of that has been Pete having 'extras', still private medicine is beyond most peoples finances. 

I know Pete posting his treatment, and especially the cost, is upsetting some people and it's completley understandable, money is a touchy subject anyway, even more so in this type of case, we are also paying for unproven immunotherapy and it's a tough desicion to sell all of your assets on a 'maybe' it is a gamble and just like going to Vegas you need a personal limit, Im not sure I would bet our house on a 'maybe', life still goes on.

It's a sad fact that having more money can buy better treatment (sometimes) we are looking at a possible surgery option in the US not available here, one night hospital stay is $15,000 + surgery costs, flights, MRI's, living expenses etc.., don't think our insurance will cover it.

Cancer sucks...

 

tanstaafl's picture
tanstaafl
Posts: 1015
Joined: Oct 2010

The big thing is how you minimize your costs and maximize your benefits.  There are often multiple ways of doing something.  A different provider, a different country, a different version, or a different technology.  People are defeating themselves when they start thinking, "I'm broke" or "Pete's wealthy".  Take responsibility for the situation, pay attention to the information on the boards, and go bargain hunting.     

Pete's blown a ton of money starting from scratch, trying on different treatments, brand shopping, and panic buying. The next person can start from there, and try to manage their costs. Perhaps for a third.   

The #1 cheap chance for any newbie is the initial dx period to get the things we talk about here, much cheaper.   Some extra blood tests, maybe some tissue testing, and then the extra goodies.  Cimetidine, celebrex, metformin, high dose vitamin D3, the LEF type supplement recommendations, etc from the cheapest place they can find. IMO this is probably/often their best chance at a good start for small price.   

Several of us have taken the the big chances, and we've told our stories.  At some point people have to read up, decide for themselves, and take action.      

 

 

manwithnoname
Posts: 402
Joined: Jun 2012

also not mentioned is getting drugs straight from the companies, our insurance refused to pay for Thalidomide @$5000 per month, we ended up getting it free from the company under a special program, appparently this is not unusual.

 

We also get Metformin and Celecoxib from cheap Canadian pharmacies.

PhillieG's picture
PhillieG
Posts: 4683
Joined: May 2005

One can try "A different provider, a different country, a different version, or a different technology" but unfortunatly at the end of the day, what works for one doesn't necessarily work for another.

Maybe if I had unlimited resources at the start of my cancer I might have tried something different but I was no where close to being in that situation. Thankfully I hooked up with a great team and have had great results. But even that is no guarantee. I've known people who went to the same doctors and did not have similar results.

I almost feel like this topic can quickly be over-simplified like gun control, politics, or religion. Cancer is extremely complex and therefore the "fix" is unique to the individual. As I've said countless times, there's no One Size Fits All so to take one person's journey and try to make it fit everyone is absurd.

I should have followed my instincts and ignored the thread. There is ONE thing I believe we all can agree on and that is that CANCER SUCKS and that everyone has success with whatever of the many treatment roads that are out there...

very worried husband
Posts: 86
Joined: Feb 2011

Keep up the good work. You are a remarkable person. Don't be discouraged to post the cost. We know your intentions. We all know there is cure some where, and we have to look for it, and I have a strong belief that these things do work!!!! 

tanstaafl's picture
tanstaafl
Posts: 1015
Joined: Oct 2010

... is that we have entered an era where we can at least get the shoe size before some clod crams a AAAA steel toed shoe on the EEE foot. The bad news is that if measurement is not FDA blessed for "protection", many oncs will call it unproven quackery and go right on with the AAAA.Yell. Use left and right arrows to navigate.

renw's picture
renw
Posts: 282
Joined: Jan 2013

I found that some of the german adjuvant therapies can be done in the neighbouring czech republic for 1/10th the cost. So there are other options.

annalexandria's picture
annalexandria
Posts: 2325
Joined: Oct 2011

I'd sell everything I had, including my body parts, to give him a chance.  I admire you, Tony, for everything you're trying to do for your son.  And if I was queen of the universe, I would make it so that everyone could try any treatment they wanted, without regard to cost. Cancer sucks, and the cost of treating it, whether here in the States or in Germany, sucks as well.

ETA this is to Tony, and the comment he made earlier in the thread.  Confusing...

z's picture
z
Posts: 1273
Joined: May 2009

Would the us hospital/drs be willing to wave the bill?  I know there are some situations where they will help with no charge to the family.  I hope your son will be able to have surgery if that will help him.  I wish you well. Lori

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